Stanley Russell Borenstein, 1925-2006

All entries in this blog are by Nathaniel unless otherwise noted.

Wednesday, April 26, 2006 11:22 AM

Several people who were at the memorial service have been kind enough to tell me how much they liked my eulogy, so I've posted the notes I prepared for it (I didn't script it word-for-word) at:

Thursday, April 13, 2006 10:32 AM

From Seth

...Please send any thing you think should be in Dad's obituary, inclujding a scanned copy of the article on him in the AA news, to I need things like the dates of his military service, when his wilberforce-israel thing was, when he was discharged from navy, how many letters to editor he got published (was in the thousands), was there a library (which library) that displayed them all once?

Wednesday, April 12, 2006 6:43 PM

Stan's will be remembered at a graveside service on Monday morning, April 17, at 11 AM, at Arborcrest cemetery in Ann Arbor. I'll send out directions as the day approaches. The interval between death and burial is shockingly long for a Jewish family, but our only other options were A) to bury him before sundown today, Wednesday, after which Passover and Shabbat prohibit a burial before Sunday, or B) to bury him on Easter Sunday, which would essentially double the cost of the funeral and, as Eliot put it, "make Stan roll over in his grave before he was even in it." Monday seems the best choice to simultaneously respect the desire of distant relatives to be present, Jewish law regarding the holidays, and Stan's lifelong search for a bargain.

We are suggesting that, in lieu of flowers, memorial gifts be sent to Veterans for Peace, 216 S. Meramec Ave., St. Louis, MO 63105. This was perhaps the last new organization that Stan became enthused about, in reaction to the Bush war machine:

Tuesday, April 11, 2006 11:12 PM

Stan died peacefully in his sleep at 10:55 this evening. Trina, Lea, and I were at his bedside.

I'll send mail some time tomorrow with information regarding his memorial service. -- Nathaniel

Tuesday, April 11, 2006 1:30 PM

Stan is back in his room at Riverview Nursing Home. This means that if he wakes up he will see familiar pictures & things, but I don't really think he's likely to wake up enough to notice them. He is now on hospice care, which includes enough drugs to keep him from getting agitated and panicked. Without the drugs, he seems to wake enough to be really unhappy without being at all coherent, so we (Eliot, me, Trina, and our daughters) aren't really inclined to skimp on the drugs.

The hospice nurse, Darcy, who is very nice, doesn't think that he has more than a week left. But a precise prediction is very hard, especially for someone who has fought as hard as Stan.

Lea came in from Chicago last night, so all four of my kids are here and being a great source of comfort and support. Lea's trip was a bit grimmer than your average Amtrak trip. She was supposed to arrive at 11:30 last night, and called us from Jackson, just a half hour away, to say that her train was on time. However, between Jackson and Ann Arbor, someone killed himself by jumping in front of her train, and the train was therefore delayed almost 5 hours as the police and coroner investigated. She got to our house at around 5 AM.

Sorry that these messages have become fewer and farther between, but there's not really that much to say any more; it is definitely a deathbed vigil at this point. -- Nathaniel

Monday, April 10, 2006 11:09 AM

A lot has happened in the last 20 hours, and I apologize for not writing sooner. None of the news is good.

When I left Stan's room at about 5:30 yesterday, he was stable, resting, and occasionally communicative. When I returned with Eliot around 8:30, he had taken a dramatic turn for the worse; flash edema had filled his lungs with fluid, leaving him gurgling and gasping for air. Intensive lasix treatment reduced the edema to the point that, with help from a little bit of morphine, he was able to sleep. Eliot spent the night, and reports that he slept peacefully until around 6 AM, when he woke for a little while, and seemed to listen to what was being said without communicating anything back in return. He has been sleeping, apparently peacefully, ever since.

At this point, there is little left that the doctors can do without inflicting significantly more suffering for very little likely gain. We are not inclined to make that tradeoff.

Sunday, April 9, 2006 3:30 PM

It's Sunday afternoon, and Trina and I are in Stan's room, watching the league-leading Tigers playing the Rangers in Chicago. I'm having a remarkably easy time mustering enthusiasm for the game -- the Tigers have gotten off to an amazing start, having won their first five games, all on the road, so it's possible to imagine a real dream season for Detroit.

Stan is much better today, physically at least. The biggest change was that the earth moved, and his bowels emptied of what the doctor referred to as "literally tons" of waste. While I'm sure he meant literally in the sense that people now say "literally, not actually," I have no doubt that Stan was completely full of it. As I told him this morning, "you weren't dying, you were just full of shit." He clearly feels much better, having followed his bowel movement with a catheter removal, a good night's sleep, and a restored appetite for breakfast. Moreover, the rectal bleeding has stopped. So it appears that rumors of his demise were at least slightly exaggerated.

Mentally, however, his comeback is less impressive. If anything he is *less* coherent today than yesterday, at least since we've been here. (We showed up after lunch time, having slept late and then had breakfast with Shana and Doug.) We'll be observing him off and on for the rest of the day; Eliot is flying into Detroit at 8 this evening, so we will probably make a final visit for the day some time after that. Meanwhile, although he's mostly dozing, I figure to hang out at least until the baseball game is over, since it's a very painless way to spend time here.

Sunday, April 9, 2006 1:13 PM

The following is probably a little more disjointed than my usual messages; I composed it incrementally yesterday (Saturday) while in the hospital with Stan, so it's a bit more stream-of-consciousness than my usual messages. I'm not taking the time to edit it in detail because I'm planning to go back to the hospital soon.

Saturday: Miriam and I are sitting next to Stan's bed in University of Michigan Hospital, area 5B. As UM beds go, this isn't a bad one. He's on the outside of a semi-private room, which means that he has a view out the window, which is nice. But he's on the wrong side of the hospital for the lovely view of the river, campus, and hills. Instead, he can see a little bit of the Ann Arbor skyline, but mostly just the medical center buildings and (at least) the green courtyard in the center of the complex. It's still a nice enough view that he actually commented on it. His roommate, on the inner part of the room, appears to be in rather worse shape than he is, with lots of extremely labored breathing and moaning, which we do our best to ignore. I'm not sure if Stan has ever been on the 5th floor before. If this room is any indication, it's where they send the short-timers.

Anyway, today Stan is coming in and out of awareness. He definitely knows who he is, and who Miriam and I are, most of the time. He's mostly sleeping lightly, but waking pretty regularly to say something or the other. He is generally more coherent than yesterday, but sleeping most of the time.

To backfill a bit: Last night (Friday night) we (Shana/Miriam and I) were at the emergency room for about seven hours, at the end of which he was admitted to the hospital. I chose admission and treatment over sending him back to River View and hospice care because he clearly still wants to fight, and because there were treatment options available that seemed likely to extend his time without being too ghastly. However, this was actually much trickier than a treat/don't treat decision: because he has always said he wants every heroic measure, but has been declining every specific measure that doesn't appeal to him, I had to answer lots of very specific questions about possible treatments rather than just choosing hospice versus aggressive treatment.

The ER was its usual grim self. It was particularly crowded -- Friday night is a peak time, I guess -- and they originally wouldn't let any of us go in with him. After half an hour, they agreed to let one of us come back. All of the actual rooms or curtained areas were full, and the patients were lined up along the walls, not an unfamiliar situation there. They put him against a wall in a fairly tight corridor, which had to be kept clear for stretchers and carts. So we had an effective space of 2 1/2 feet by 12 feet, and I alternated sitting near his head or his feet. However, at one point when they were examining him, they excitedly drew curtains around us -- they have recently installed curtains that will give some privacy even to the patients who are lined up in the usual places on the walls. Our 2.5 x 12 ft space was now enclosed in a very claustrophobic curtain.

After a while, I decided that we could get away with having two people sit there, and I brought Miriam back in with me. In the two minutes that I was gone, another patient had been brought into his hallway, another curtain drawn, and his curtained space was now down to 6 feet long. From then on, there was no room for us to do anything more than stand near him and move out of the way whenever carts or stretchers needed to pass. It was lovely.

In the end, Miriam and I went home to bed a bit before 1 AM, after talking with the doctors from the team on the floor he was being admitted to. We both slept soundly and dreamlessly, and came in today (Saturday) to find him with a sitter -- someone there to keep him company. She seemed very nice and empathetic, and apparently was there because he was calling for help a lot overnight.

I had a long talk with the doctor, both with and without Stan present. The situation is complicated. The one thing they would be most inclined to do, in terms of treating him, is to give him a colonoscopy, because his rectal bleeding could have any of several causes, some of which could be treated. When we talk with him about this, and ask him if he's willing -- and bear in mind, Stan has never had a colonoscopy in his life because he's afraid of them -- the best he'll say is "I'm considering it." However, when they try to get him to drink the ucky colon cleansing stuff, he won't take more than a sip. So it seems the only way he would have a colonoscopy would be if they gave him the prep via a stomach tube, which I'm reluctant to authorize against his wishes.

Some of the moments have been somewhat amusing. At one point, for example, he woke up just enough to ask, "How is the press covering this shindig?" I told him that I thought they were mostly focused on the elections -- a totally random comment which popped into my ahead and, I think, made Miriam look at me as if my mind was suddenly going, too. But Stan seemed to find that a satisfactory answer.

Mostly, though, it has been quite sad. At one point he apparently told the nurse that he thinks we (Miriam and I) are hiding things from him. And he'd regularly mutter things like "Shit, there I go," and "hell, hell" -- apparently responses to his own symptoms, as best I can tell.

Over the course of two hours he went from relative coherence to sleep to panic to sleep to grogginess. At one point he opened his eyes and recognized Miriam; a few minutes later he told her that her face had changed. Worst so far was a period of difficulty breathing, less coherence, and raw panic. For several periods, Miriam and I (and later Trina or Shana) were each holding one of his hands, and every 20 or 30 seconds he would start yelling "help" or "Someone, help me" or "I'm dying" or something like that. We would calm him as best we could, but it kept coming back a few seconds later. At several points, we asked him what we could do for him, and he said, "I don't know" -- but one time he said "cheerios."

Meanwhile, Trina's plane back to town was delayed, and she was bumped onto another plane. We're expecting her back late this (Saturday) afternoon, at this point.

At one point, when he was calling for help, I asked if he was calling to God. He said "I'm not that desperate yet." Maybe ten minutes later, when he was calling for help, Miriam asked him who he was calling, and he said, "God."

The doctors, however, say he's not dying -- at least, not in the sense of dying today, as in a deathbed vigil. Those of you who were ever privileged to see Stan sick back when he was basically healthy will remember that even a stomach ache was enough to have him yelling "I'm dying," and it doesn't really sound all that different today. I keep reminding myself that he said he was dying even when he wasn't, so the fact that he's saying it now doesn't necessarily mean that he knows it is true. But I think he does know.

It's now about 4:30. Trina and Miriam should be here in a half hour or so. For the last half hour or so, Stan has been calling "Help me" roughly once ever 40 seconds or so, interspersed with occasionally moans. The nurse just tried to get him to drink some of the colonoscopy syrup. As usual, he took one sip, then refused any more. As she tried to explain why it might help, he called out "help me." I think it is just his default sentence at this point. But he says it very plaintively. If you ask him if anything hurts, however, he says no. For someone who doesn't hurt, though, he makes a heck of a lot of noise.

His new nurse thinks that his discomfort and agitation will probably increase until he moves his bowels, so she keeps trying to get him to drink more of the prep solution. He never takes more than a sip. Although I conjecture that you could trick him into taking another sip about every ten minutes, if you were so inclined, I also fear it might backfire and make him start refusing water. (Later, the afternoon nurse proved much better at cajoling him, and gradually managed to get a fair amount of the solution into him; between that an enema, I am hoping that he will have moved his bowels by the time we return on Sunday.)

He keeps asking to be moved onto his back, but he's on his back. He also keeps asking for help taking his pants (or underpants) off, but of course he's not wearing any. He's in a hospital gown. He has also repeatedly asked Miriam, when she was holding his hand, not to rip his skin off. She didn't, of course, but he probably asked just in the nick of time, knowing Miriam's propensity for ripping harmless old men to shreds. :-)

At about 5:00, when the nurse was in the room, he asked her, "am I doing enough?" "Doing enough what?" she asked. Stan replied, "to protect my family." That was it for me; I had to step out for a while to compose myself. I'm sure it won't be the last time I fall apart in this process, but it was the first.

It's now almost 7, and Trina and Miriam are here with us again. Stan is now being moved back into bed after about an hour in a wheelchair, which I think was supposed to help distract him and help him feel less panicked. It didn't work, but it may have tired him out a bit. Both moves were accompanied with the predictable horrible moans and groans. But all his vital signs are good, and there's no sign that the end is particularly near. Apparently it is not out of the question that this will go on for weeks or even months.

Although he calls "help" every 30 seconds or so, when we ask him what kind of help he wants, we get a different answer nearly every time. Among my favorites were "anything" and "you figure it out." After Trina arrived, he went through a cycle of asking her to raise his blanket, then lower it, then raise it, then lower it, etc. After a while, he asked her to "fix my blanket." Trina dutifully asked, "Do you want me to raise or lower it?" and her replied, "both." A little later he became obsessed with getting a camera, apparently because he wanted to give it to "the girls."

As evening set in, Shana and Doug (her boyfriend) joined us for a while, lending a bit more positive energy to an otherwise grim room. Eventually, I discussed things with the nurse, and decided that we would leave for the night at about 9, when they came in to give him an enema. They planned to have someone sitting up with him through the night, though. We went home and slept the sleep of the just for a good long time, after which Shana and Doug brought bagels and cream cheese for breakfast. Now I'm finishing up this message to give you all a status report, and I expect us to be heading back to the hospital shortly. Eliot is coming in to town this evening, which will certainly be a welcome breath of fresh air.

Thanks to all of you for your kind words and support. I will keep you informed in the excruciating level of unnecessary detail that you have by now come to expect from me. If you can't wait for my next message, feel free to call!

Friday, April 7, 2006 5:59 PM

I'll be leaving in a few minutes to meet Stan at the hospital. So, I suspect, will all of my local daughters, so you don't need to worry about me being left to stew all by myself.

Amazingly enough, there is no way to admit him directly to a hospital floor, even in this condition. Instead, we get to spend Friday night at the ER. I'll find a way to let you know when there's any more news.

Friday, April 7, 2006 5:12 PM

I just got off the phone with River View. Today Stan got another ultrasound, and the news was grim. He has developed a deep vein thrombosis (I'd explain the details if I knew them). In a separate development, blood is leaking from his rectum in dried small clots. The end may be near.

However, since we hadn't yet put him on hospice care, and since I didn't instruct them otherwise, he will be in the hospital (emergency room) soon (my guess is by 6 PM EDT). If he lives long enough to be discharged, however, I expect to discharge him to hospice care.

Friday, April 7, 2006 4:14 PM

This morning at 9-ish, Miriam and I met the hospice evaluation team (social worker and nurse) and discussed Stan's case.  They definitely consider him qualified for hospice, and they definitely think that the decision is, at this point, mine and not his.

They also told us what would differ in Stan's care if we put him in hospice care, given that he's already in a nursing home.  He would stay right where he is, with the following changes in his care:

-- There will be a DNR order.  With rare exceptions, there will be no more hospitalizations, physical therapy, lab work, or substantive efforts at recovery.

-- There will be occasional visits -- one to three a week, most likely -- from the hospice nurse, the hospice aid, the social worker, and (if we want) the chaplain.

-- There will also be massage therapy if we want it (not sure how often), and pet therapy if we want it (ditto).  I figured if Stan wanted pet therapy, we have plenty we could bring him, but that's not generally been his "thing" anyway.  But the massage might feel good.

-- There will be some -- it seems like they can't really predict how much -- "companionship" visiting, i.e. someone there just so he isn't alone.

I am definitely torn.  I have a hard time imagining him wanting a DNR under any circumstances, and there's still a little bit of him there.

Not much, though.  Miriam and I went up to visit him while we were there.   He was asleep when we first arrived.  A hearty "hello" and such banter barely roused him to grunt.  We sat down to see if he was going to wake up.   (We were waiting for the hospice folks at that point anyway).  

A little later, one of the staff came in and tried to wake him up and engage him.  The only way she was able to get more than a grunt or two was essentially by tickling and cooing at him as if he were a baby.  A tickle on the nose elicited a remarkably happy looking smile.  (I baby-sat for a friend's four month old girl last night, and her responses were eerily similar to -- though much more frequent and animated than -- Stan's.)   I don't know if I could possibly be strong enough to work in a nursing home; I am in awe of many of the workers at River View.

As it turned out, he was particularly groggy because he was on atavan.  Apparently they gave it to him around 4 AM, after he had several times awakened crying out for help.  So not too long after our arrival, he woke up a bit and we chatted.  He got several sentences out, and he ate at least two Oreo cookies.  The nurse asked him if he knew who I was, and he said he didn't.  She told him that I was his son, which seemed to disturb him only briefly.  Shortly afterwards, I left the room, and the nurse asked him if he knew who Miriam was.  Again, he didn't.  She told him that this was his granddaughter, and asked him if he remembered her name.  He squinted as if thinking, and managed to come up with:  "Trina?"

Before I left, I asked him if he wanted anything.  For the second or third straight time, he said "salami" so I think he means it, and I will try to bring him some.  Salami, of course, is about as bad as any food can possibly be for him (mostly because of the salt).  So he wants salami, ice cream, no catheter, and all heroic measures.  Consistent to the end.

The hospice nurse felt that it would make sense to simply give him an atavan at bedtime, since he has a history of nighttime panics.  That makes plenty of sense to me.  That's probably an example of some of the small things that would differ with hospice care -- the hospice nurse, unlike the nursing home staff, would have authority to do that.  

If you have any strong hospice opinions, and haven't weighed in yet, please speak now or be prepared to hold your peace.  Thanks.  -- Nathaniel

Wendesday, April 5, 2006 12:01 PM

Today I had a "care conference" with the staff at River View. This is a regular feature of Stan's stay there -- every couple of months, the family (today, just me) meets with the staff team leaders (nursing, activities, diet, etc., etc.) for a comprehensive discussion of the patient's situation. I was pretty sure before I even walked in that today's conference would be different, and it was.

Stan is failing rapidly, but it's still not possible to predict just how long he will last. However, the staff is recommending hospice care for him. I am inclined to agree, but I'm acutely aware that A) he will panic any time he hears the word "hospice" and B) although he gave me power of attorney -- and the staff tells me it is fully in force, i.e. they do not consider him really capable of understanding the decisions to be made -- he *always* said that he wanted "every heroic measure" taken, no matter what.

I don't want to imply that hospice workers are not heroes, but I am not inclined to consider hospice care a heroic measure. However, the terms of hospice care will prevent some kinds of resuscitation measures that are heroic. My preferences are probably pretty obvious to all who know me, but I would be interested in any thoughts the rest of you might have on the ethics of the situation. Although Stan gave the power of attorney to me, I want to listen to anything you might have to say.

I should also add that Stan has given me a couple of loopholes, recently, that are worth considering:

1. Stan has been quite clear about his desire not to be catheterized.

2. I learned today that Stan has basically begun to refuse all food except ice cream. (I'm a tad embarassed to mention that it took me almost a full minute to stop laughing when I heard that.)

Decision #1 clearly contradicted his earlier "all heroic measures" request, but I'm quite sure he means what he says on this score, at least. #2 is even more interesting -- he will surely die sooner if he eats nothing but ice cream, but is a balanced diet really a heroic measure? He would also cease getting physical therapy if he went into hospice, and he really *wants* physical therapy because he still thinks he's trying to get better. But the physical therapist doesn't really think there's much she can do for him any more, since he is making no progress on being able to support his weight or to balance himself. He's basically bed-or-chair-bound, but if you leave him untethered he will climb out and fall right over. And over. And over.

For my part, I have no problem with putting him on an ice-cream-and-no-catheter diet. But again, I am interested in anything the rest of you might have to say. Meanwhile, we will be getting a hopsice *evaluation* done within the next few days, so that they can tell us what they might be able to do for him. The staff clearly believe that the extra attention he would get from hospice is the best thing for him right now.

It's clear that much of the staff at River View has become quite attached to Stan. His gentle craziness has come to seem ever more appropriate as he aged, until all that is left is the pure personality -- simple, loving, idealistic, and not strong on details. I have little doubt that some of the staff members will have a harder time saying good by to him that some of the family members.

I had been anticipating this moment for a long time, and expected it any day now for six years or so. Nonetheless, it managed to shake me up. I left the office to go to my car. I walked to the elevator, because I always walk to the elevator to leave River View. Usually, however, I'm on the second floor, not the first. Someone else pushed the elevator button -- there are only two floors -- so I found myself on the second floor, expecting to be on the first floor. The layout of the hallways is such that I walked to the door outside, but found myself in the dining room. I walked back to the elevator, looked around twice and walked back to the dining room, still trying to find the door outside. When I finally realized I was on the second floor, I went back to the elevator, only to suddenly realize that I was on Stan's floor and had not yet visited him today. So I went to visit him.

I found him seated in the recliner, at about a 90 degree angel towards the TV, featuring the Montel show. His eyes kept wandering towards the set whenever a pretty face showed up. (I hypothesize that the male attraction toward female beauty is largely an autonomic response.) I sat down, and he asked me to tell him about myself. Unsure if he knew who I was, I talked about "what was new" and gave him as many cues as I could, and he definitely bounced back to reality several times during the conversation. He asked where Trina was -- Trina, the mother he never had -- and I said she was in New Mexico. He seemed to remember that, and when I reminded him that Trina's sister had given birth, he said "with a strange name, right?" (For those who don't know, my sister-in-law delivered my niece Zohara Miel Flores, a.k.a. Zomi, on Monday. I think that shows that he continues to form some new memories, but it's also possible he was thinking of Zomi's older sister, Mahina.)

So we talked for a while, and he gave me cookies. The nursing home has an apparently endless supply of Oreo cookies in little packets of four, which he loves and therefore (of course) hoards. These were obviously quite fresh, so I ate a couple, but he had no interest in them. However, he definitely seemed a bit better than yesterday; the swelling in his legs was much reduced, and he was a bit more alert.

At one point, he pointed to the portrait of him and my mother on the wall. "Do you remember Debbie?" he asked me. "Yes," I said, "I remember her." I didn't say more, but I think he suddenly realized she was my mother, and perhaps even that I was middle-aged when she died.

At another point, he said to me, "you know, we've got to decide where I should go." I looked at him, and asked, "are you unhappy here?" He said, "Sometimes the food is good, and sometimes it's terrible." I asked him if the quality of the food was the only thing he cared about, and he laughed. He agreed that they treated him well at River View. I asked him if there was somewhere he wanted to go, and he said, "I want to stay alive." I was completely tongue-tied at that point, which is a bit of a rarity for me. Fortunately, a very pretty girl flickered onto the television screen, and we were both distracted long enough for me to be pretty sure that he'd lost track of the conversation. I didn't bring it up again.

At another point, he asked me if I had any interest in taking home "that artwork over there". He pointed to a valentine he had received, which was on the wall. It was a photograph of him, in the dining room, looking dignified and serene, his head looming large against a background of the other residents at more of a distance. The photo was mounted on a heart shaped piece of what I, in my colorblindness, assume to be red construction paper, with the words "Be My Valentine!" on it. Stan is offering this to me, like a pre-schooler offering his parents the latest masterpiece that his teachers had helped him paste together. I took it home and put it on our refrigerator like any proud parent.

I've already missed one meeting at work yesterday afternoon and one this morning; I suspect I should start cancelling a few more.

Anyway, if there is anything that I've forgotten to tell you, or forgotten to ask about, please feel free to ask me. However, Lucy Fullenwinder, the angel of social work mercy who has been my primary point of contact with River View, has said that she would be happy to receive your questions by phone or email. Email is probably the surest way to catch her: Lucy Fullenwider She's on this mailing list (Hi, Lucy!) and should feel free to chime in and correct anything I've said in error. Calling on the phone can also work; you can call the nursing home at (734) 761-3800 and ask for Lucy.

And, of course, you should definitely feel free to call or email me. I have power of attorney but don't fancy making any decisions alone. My general sense is that we should put him on hospice care within the next few days, and do our best to avoid him having to think about it. Please feel free to express your views. I have long anticipated that there would be an ethical dilemma regarding his various expressed preferences, and it seems to have arrived.

Thought for the day: "He who loses wealth loses much; he who loses a friend loses more; but he who loses his courage loses all."

-- Miguel de Cervantes

Tuesday, April 4, 2006 11:21 PM

Today was a very rough day.

I met Stan at the Turner Center for an appointment with his primary care physician at 1:30. By the time I rolled him into the transport van to go back to the nursing home, it was about 5, and all I could think about was rushing home for a shower.

I arrived just as they were calling Stan in. They always start with a weighing, and this is where I got my first inkling that all was not well. He can no longer stand up. It took three people about five minutes to weigh him; he was unable to bear any weight on his legs at all for more than a second or two -- far weaker than he has been lately. However, his weight was 173, which is pretty close to his target weight, so I figured that at least the water retention was under control. As you'll see below, I was wrong about that. I also noticed that in order to stand him up, they had to undo a belt that held him into the chair; unbuckling it set off an alarm which we had to turn off. It became clear later in the visit that he really needed this. It also became clear when they stood him up that he was having a major episode of incontinence.

So, we went on in and the new resident, Dr. Welch, and the very nice new primary physician, Dr. Tyszkowski, spent a LOT of time with us, and they checked him out pretty thoroughly mentally and physically. It wasn't good. They have a mental status test that they have given him several times over the years. Five years ago he got 30 out of 30. Two years ago he was down to 28. Last December he was down to 21, and today he was at 19. What this means, basically, is that he failed 11 of the 30 tests they gave him. Examples of things he got wrong include:

  • the year (he guessed 2002 or 2003)
  • the month (March, not too far off)
  • the season ("June" -- a surprising answer)
  • counting backwards by 7 from 100 (he messed up everything after 93)
  • writing a sentence (he didn't even consistently go from left to right; the only word I could make out was "lousy.")
  • copying a drawing of two hexagrams (he produced a messy cross, basically)
  • remembering a few words for a few minutes
  • the name of the hospital ("University of Ann Arbor" isn't really that close)
  • on several questions he thought about the answer for a while, and then completely forgot the question. (He did this on questions that weren't part of the test, too.)
  • About halfway through the appointment, he said he needed to go to the bathroom, and tried to stand up. I stopped him and told him we'd take him there in the wheelchair -- he obviously had forgotten that he couldn't even stand up, and without my intervention, he would have fallen over immediately. That's clearly why he was belted in. I got two nurses to help me, and we struggled for a while to try to get him in a position to use a urinal, but it was too late. The nurses cleaned him up, and I took him back to the doctors. They spent about fifteen more minutes with us, and then Stan had to go again. We went through the same drill, but this time he was unable to go. The doctors continue to be concerned that if he can't fully empty his bladder, he's very prone to urinary infections, but once again he declined a catheter. He didn't say as much, but I get the impression that at this point he would really rather die than be catheterized again. I was not inclined to argue with him, nor was the doctor; it's clearly a quality of life decision that he should make for himself, and I *think* he understands the consequences, but it's very hard to be sure exactly what he understands.

    Anyway, the doctors conferred for quite a while, and Dr. Tyszkowski finally decided that he was on too many medications. Several of his medications are treating conditions that it's probably silly to be worrying about with him -- for example, his cholesterol level is unlikely to be what kills him, and less blood pressure medication is unlikely to raise his blood pressure in his current state. All in all, they took him off 6 of his medications:

  • Seroquil, which he had only been taking for a couple days and is contraindicated for Parkinson's patients
  • Lipitor
  • Zetia
  • Imdur
  • Hydralazine
  • Iron supplements
  • The hope is that perhaps some of his symptoms are side effects of some of these medications. They also increased his Cipro, Lasix, and Flomax. All in all, that was a LOT of changes to his medications. Obviously we'll have to follow the results closely, and the doctor has asked River View to check his vital signs daily.

    They also observed that his legs were VERY swollen, so he was clearly retaining too much water (hence the increased Lasix). Apparently, however, he's been losing an equal amount of weight in other parts of his body, so he's stayed near his target weight, thus masking the water retention. (River View has been weighing him daily, but their instructions were to worry if his weight changed, which it hasn't.) It's pretty clear where he's losing the weight; his shoulders are basically down to skin and bones.

    In fact, his legs were so engorged that they sent us down for an immediate ultrasound of his legs, to make sure there wasn't a blood clot. I never realized that an ultrasound could be painful, but when they had to press hard on his legs, he hollered quite mightily. Apparently pressing that hard really hurts when your leg resembles a taut water balloon. Anyway, after a half hour or so, they were convinced there wasn't a blood clot, so they sent us off for his final stop, a blood draw for further tests. I then called Care Transport, who took him home just before 5 PM. While we (just the two of us)were waiting near the entrance, he said the had to go to the bathroom and tried to stand up again; fortunately I had him re-belted in by this point. Not wanting to go through all that again, I'm afraid to say I simply distracted him, and he didn't say anything more about it until they came to pick him up. I spent the evening (dinner and a movie) with Miriam, which made me feel much better.

    It was pretty gruesome overall, but his spirits are basically quite cheery; he made lots of jokes, and in a series of questions about his mood he maintained his usual optimistic, life-is-good-and-I'm-never-depressed attitude I honestly have no idea how he manages to do that.

    Along the way, he made lots of random comments indicating a very tenuous grasp on reality. He asked me if I'm enjoying my new job (perhaps he thought I was Seth?) About 5 minutes after he asked me where Trina was and I told him New Mexico, he asked me if she was still in Greenbush. He also kept seeing or hearing things that weren't there -- music, voices, and a guy in a revolutionary war costume. He also told me that some marbles had fallen to the floor, and when I asked where they had come from, he said "inside my head" or something like that. It didn't occur to me at the time, but Miriam later pointed out that this might have been a "losing my marbles" joke. Certainly he was cracking jokes at every opportunity, as usual, but most of them were more recognizable as jokes.

    I don't expect him to last much longer -- but then I've been saying that for about six years, so in writing these words I feel like the boy who cried wolf. Nonetheless, he always enjoys getting phone calls: 734 769 2328. Sorry to be the voice of doom and gloom, but I call 'em as I see 'em. -- Nathaniel

    Monday, April 3, 2006 8:04 PM

    Stan continues to deteriorate.

    I've been out of town for the past two weeks, and Trina's been gone for one week and counting. We talked with him fairly regularly during that time. Today, within an hour of my getting home from the airport, however, he called us in a panic.

    Gettye took the inital call. I picked up the upstairs phone shortly thereafter, but gradually came to realize that neither of them could hear a word I said. (A trip to Radio Shack is in order tomorrow.)

    So, Stan and Gettye didn't even know I was on the line, and Stan clearly had no idea who Gettye was. She was telling him that I was coming to the phone, but he didn't understand -- he was too busy carefully spelling out my name for her: N-A-T-H-... By the time I got unmuted (by taking Gettye's phone), he was in such a panic that I couldn't make him understand who *I* was. But after a little while, a nurse took the phone away from him to talk to me. "I wanted to make sure there was someone on the other end of the line" she said. I told her who I was, and then she explained to Stan who I was, and then we finally started to talk.

    He didn't know where he was, and more important he was terribly afraid that *we* didn't know where he was. I assured him that he was in a very good place, and that we definitely knew where he was. We talked for a while, and I offered to come over, while (I must confess) also making it clear that I had just gotten in from Dallas a few minutes earlier. He calmed down, it seemed, and he said that coming in the morning would be OK, but he made it clear that he really wanted a visit tomorrow. (Later, when I checked my calendar, I realized that I'm meeting him at the Turner center tomorrow, for an appointment with his primary care physician. Probably a good thing, too.)

    So, his memory is getting pretty bad, and it's clearly pretty scary for him. He obviously didn't remember anything about River View at all, though he's been there for a full year this month.

    It would be very good if people called him tonight, I think. It might make him feel a bit better. Just call him and tell him you love him. Don't expect to be able to communicate a whole lot more than that, but try to make him laugh if you can. -- Nathaniel

    PS -- I keep suggesting that he watch a funny movie, and he always ignores my suggestion. Feel free to try your own magic wands. -- Nathaniel

    Friday, March 24, 2006 1:11 PM

    [From Trina]

    Yesterday, I went out and bought 4 pairs of chinos and 6 long-sleeved shirts.

    When I I went to install them in his closet, I found an almost impenetrable mess. After stuffing his large suitecase, the amount of stuff in the wardrobe is manageable. He has ~20 long-sleeve shirts, 4-5 Ts, and 10 or so pairs of long pants. His suitcase full of back-up clothes was bereft. Lucy is looking into special add-on sleeves for falling people.

    His shoes do not seem to be a problem, as he wears only his slippers.

    I spent a couple of hours trying to chat with Stan today, as I packed up three boxes of books, and his large suitcase. He hovered around the edges of reality. He asked me twice how long I thought he'd be in this place. I answered both times that I did not know, was there somewhere else he'd prefer to be. One time he lost track of the "conversation" and the other he said, No, he liked it here. He pointed out several objects over the course of my stay, none of which I was able to see. Especially the show where someone gets killed that seemed to be going on where the window was. When I couldn't see Seth asleep, Stan suspected that it must have been Eliot, then. I asked him shortly after I got there, in response to something *I* don't remember, if Seth had called him today. He said No. We had the same conversation a little while later. Then a little while after that, he told me that Seth had called. I asked if it was still Seth's week off, or whether he'd started his new job, but Stan didn't know, because he hadn't talked to him recently.

    I left the computer and desk, but removed the rafts of crinkled papers, and took home the folding chair. I told him I could use it at home, and he could just sit in the wheel chair at the computer. That made sense to him. He asked if I'd seen his letters to the editor. He still thinks he's using the computer.

    I left both book cases, but only the tall one is full of books. The short one has all the crap from his window sill, a couple books, and is still supporting the TV. Unless we have something else to put the TV on, I think it'll have to stay.

    He didn't look very well. Wan, weak, and vacant.

    Wish something amusing or uplifting happened. -- T

    Thursday, March 23, 2006 11:44 AM

    [From Trina]

    I just got off the phone with Lucy, who just got out of a conference on what to do about Stan's falling.

    His wheel chair has been equipped with a "seat belt" to remind him not to get up an walk, but he simply unclasps it, gets up, and falls down. NO amount of reminders and admonishments has improved his ability to stay put -- or perpendicular.

    The group came up with two recommendations. The first is easy: make sure he has more long pants and long sleeves, so that when he does fall, he is less likely to tear skin/bruise. If his suitcase doesn't yield enough extra clothes (he goes through them fast, and laundry has a two-day turn around), then I'll get him some. No big deal. However, the second is harder.

    The staff suspects that Stan is being distracted by things in his room. While doing task A, he notices a piece of paper he wants to look at, and reaches for it, thus resulting in a fall. Although his stuff isn't on the floor and doesn't take up that much room, a sparser space would give him fewer things to fall against. What this boils down to is a quality-of-life-issue. Everyone knows how important Stan's "papers" are.

    Monday, March 20, 2006 4:39 PM

    [From Trina]

    I went into Riverview and had a longish, informative, and helpful talk with Lucy.

    Xanax: It seems that, in spite of U of M's distress at Stan being on Xanax again, THEY are the ones that put him on it. During his last hospital stay. It is in the midst now of being changes back to Ativan. Which one is worse for Stan's confusion seems to be a matter of some controversy.

    The conclusion I drew from my chat with Lucy is that this intermittent confusion and incoherennce is now simply the norm. It is undoubtedly contributed to by a few of his meds, the now chronic urinary tract infection, the Parkinson's, etc., but I have come to believe that it is mainly due to continuing brain decay.

    When the doctor saw Stan at U of M on Wednesday, she insisted he should be catheterized every 3-4 hours, and that he should learn to do this himself. This is obviously out of the question. Catheterization over and over vs. leaving it in indefinitely is also a matter of controversy. Lucy and I discussed the relative pros and cons, and I feel that if he doesn't refuse the catheter, it should simply be left in. However, Stan refusing the catheter is a likely event.

    Lucy is going to double check on the meclazine (Antivert), as I suspect it is totally unnecessary, and she doubts it's helping a lot. He's not so much dizzy, and simply has no idea where his body is in relation to the space around him. I see no indication that the Antivert is preventing any falls. However, Lucy thought there might be a concern about the effects of taking him off, so she will double check.

    When I spoke to Stan on the phone yesterday, he was completely out of his mind. When we saw him at the doctor's office on Wednesday, he was partially out of his mind. I asked Lucy to ask the psychiatrist to test for competency. Unless he is having a very good day, I very much doubt that he will pass. If he doesn't, then the Durable Power of Attorney kicks in. If he does, then we'll wait awhile and try again.

    Meanwhile, *I* feel that the UTI should not be aggressively treated. The infection is causing him no symptoms he is aware of and no pain, but it is likely that it will shorten his life by some matter of hours. I cannot see dealing with the catheter as worth those hours. After talking to Lucy, I went up to visit Stan.

    Stan was lucid. Well, as lucid as ever. He had no recollection of the long phone conversation of yesterday in which he told me he'd sent out a whole bunch of letters to the editor about peace in the Middle East, and that there was a letter-to-the-editor contest going on, and that that was great because it had been a long time since he'd won any contests. Today, he asked me several times when Nathaniel was getting back, and one of the times seemed alarmed at the answer (two weeks, but I'll be here all this week).

    I told him that he had a UTI, and that someone would be by to put in a catheter. I told him that he has the right to refuse it. I told him that as far as the UTI went, I saw two options: he could treat it aggressively (ie, accept the catheter), or he could simply take the antibiotic and take his chances. I told him the antibiotic might kill off the infection, but that it hadn't before. I told him that if he didn't get rid of the infection, it would likely shorten his life. I also told him that the amount his life would be shortened was probably not a lot -- days, weeks, maybe. I told him he needed to think about how he wanted to live the time he had left. I suggested that lidocaine could be used on the catheter, but he was very little comforted by that. He spent some seconds cogitating, and then asked me to tell hiim "something good about the girls". I told him about my birthday dinner on Saturday, and described the chocolate lounge, but I was sure he wasn't able to listen. I told him Miriam was concerned that the restaurant was so comfy that people would not be able to resist having sex there. He OBVIOUSLY wasn't listening.

    After a couple of moments he said that he wanted his remaining days to be comfortable. He said he thought he had it better off than Debbie, because he isn't in any pain. I agreed that he did, and pointed out that by the time she died, there was nothing left to do about the cancer, and that she was only being treated for pain. He seemed somewhat satisfied by that. He asked me about The Blue Nile, and said he'd like to go there. I told him we'd take him on April 3. We'd better find out if Care Transport will do it. I guess he's been thinking about it, or the story of the chocolate lounge reminded him of it.

    It is my profession, psychiatric recommendation that I go in again on Wednesday, and either repeat our conversation, or try to take it a step further. I felt just the tiniest indication that he might be prepared to finally "grok" what is going on.

    Sunday, March 19, 2006 3:56 PM

    [From Trina]

    I checked voice mail when I got home from the airport and found two messages from Riverview. Your dad had a fall on Wednesday night, and complained of pain in his wrist and side. They send him to the hospital for xrays, but didn't call back to tell us the results. So, I called them, and there are no broken anythings. The nurse (the Asian one) offered to bring Stan to the phone, and I accepted. He was totally incoherent. I'm sure he knew who he was talking to, but answered every inquiry with a total non-sequiter, usually about letters to the editor and some sort of contest. I am assuming, uncharitably, that he is being given Vicoden for the residual discomfort from his fall. I will go in early tomorrow to talk to Lucy, follow up on your (N's) email, and generally raise Hell, I guess. -- T

    Saturday, March 18, 2006 3:32 PM Today, when Trina and I took my father to the doctor on Wednesday, and the doctors looked at his file, they found out that he was back on Xanax and Meclazan (antivert) again! As you may recall, this happened once before, and made him so loopy that the hospital wrote specific orders never to give him Xanax or antivert again. So, this time, the doctor sent him back to Riverview with those same orders again, and I really hope that this time they will be followed. We still don't know who prescribed these medications for him again, or why, but the fact that he is back on these drugs again may account for at least some some of his recent mental status problems.

    Wednesday, March 8, 2006 8:28 PM

    This evening, Stan is back and Riverview and happy to be there. We called him on the phone a little while ago, and he was able to answer and have a conversation. So the last few days have basically been a false alarm, except he's not quite as alert and with-it as he was a week ago. Go figure.

    Wednesday, March 8, 2006 3:21 PM

    Today, Stan is significantly better. We got a call this morning from the new doctor, who hadn't seen Stan before today, but said he seemed pretty lucid to him. We went in, and sure enough, he is much better today, though not quite back up to where he was five days ago. (His mind wanders more, but you can get his attention and have a reasonably rational brief conversation.) Meanwhile, all of the tests for any new problems have come back negative. The best guess anyone has is that some combination of dehydration and the vicodin caused the symptoms, and that the vicodin stayed in his system a long time because of his diminished kidney function. If that's true, he should continue to get better.

    Anyway, the bottom line is that he's better, but not all the way better. Still, shortly after we got home from the hospital, we got a phone call telling us that they were sending him back to Riverview today. He should be back to his room there by tonight some time. You can try calling him and see how lucid he is when you catch him! 734 769 2328.

    Tuesday, March 7, 2006 5:22 PM

    We are home now. Stan is resting peacefully in his hospital room. (Room 6141, but I don't recommend calling, he won't be very easy to talk to.) He has shown moments of borderline lucidity, but he is still mostly out of it and sleeping most of the time. We talked with his new doctor, who says they've tested for every obvious explanation and haven't found anything -- CT scan showed no sign of a major stroke, blood tests show no sign of infection or toxicity. So they're going to watch him for a day or so and see if they can figure anything out.

    Tuesday, March 7, 2006 3:15 PM

    Stan finally woke up for a while, and has been semi-coherent. It turned out he was hungry -- they don't feed you in the ER unless you ask for it, apparently. We finally ended up having Trina run out to a nearby restaurant for pancakes and orange juice. He ate these with great gusto, however -- no problem with his appetite! The time was passing very slowly, until we found the World Baseball Classic on TV. Since then we've been watching the Dominican Republic beat up on Venezuela, and I have been reflecting once again on how many times baseball has made my life far happier than it would otherwise have been. Stan has also been enjoying the game -- it's something he can drift into and out of, I guess. Meanwhile, Trina has a book to read, at least.

    Tuesday, March 7, 2006 12:50 PM

    I am writing this sitting by Stan's bedside in the U of M emergency room. He has now been in the emergency room nearly 24 hours, waiting for a bed to open up in the hospital. There is no indication of when that might be -- the ER is almost like a scene from M*A*S*H, with the corridors nearly full of people on gurneys. At least Stan is in one of the actual ER beds, so there's a curtain that gives us a tiny bit of separation from the rest of the ER.

    Stan has gotten significantly worse since yesterday. Apparently he has not been coherent during his time in the ER. Now he is mostly sleeping, sleeping, sleeping. We managed to rouse him enough to say hello. He opened his eyes and smiled, and I'm pretty sure he knew who I was. I asked how he was feeling, and he mumbled; I asked if anything hurt, and he said "my penis" -- sure enough, he's catheterized. But he was back asleep again before I could even respond.

    Meanwhile, the actual treatment he is getting is ZERO. There's not so much as an IV in his arm, and there are no monitors of any kind on him. (He does have oxygen and a catheter, however.) They have sent out a few blood tests, although I don't know which ones or what the results were. Trina started reading his chart, but the nurse, Tim, came in and got very angry that Trina was reading the chart, and took it away from her. I pointed out that I had Stan's durable power of attorney, and he said, "well that's you, not her." I said, "OK, so give me the chart." He looked uncertain, and I proceeded to tell him about the time, in this very hospital, when I had read my own chart and learned that I was pregnant. He said, "I understand what you're saying, but that was your own chart." I pointed to Stan, sleeping and out of his mind, and said, "do you think he's going to read his own chart?" Unfortunately, Tim couldn't see past his own fears and said that it was hospital policy, and took the chart away. (Trina said, "Now I bet they'll lose it.") Fortunately, however, Trina had already read the whole chart, and determined that they hadn't given Stan any treatment yet, and that their primary source of information about him, 22 hours after his arrival in the ER, was a printout of my "stanfam" email message of yesterday, helpfully supplied by Lucy from Riverview.

    Now we're sitting here, watching him sleep and waiting for a physician. Any physician. Apparently there has been a little mix up -- the physician who saw him didn't leave her name or number!!! So in 24 hours in the ER, as I understand it, he *has* been seen by a physician, but nobody knows which one. They are trying to find out. Trina and I are of course appalled, but given our experience, we're not suprised, either. It's amazing that Tim can defend this situation with a straight face but not let me read Stan's chart.

    Monday, March 6, 2006 3:32 PM

    I followed up with the nursing home, and they brought the doctor and director of nursing in to see Stan. The decision: they're sending him back to the hospital for admission and evaluation. More information as I get it. -- Nathaniel

    Monday, March 6, 2006 2:11 PM

    Today was a very tough day. I met Stan at the Turner center for a checkup with the psychiatrist. From the moment I saw him, I was quite alarmed. He was leaning way over to the left, but appeared totally unaware of it, and unable to straighten up when I asked him to.

    As usual, the first thing he wanted, upon arrival at the Turner Center, was a cup of hot chocolate. (It's free.) i made him a cup; although he usually makes it himself, he didn't look like he would be able to. He took a few sips and then went to put it down, but would have more or less dropped it in thin air if I hadn't taken it from him. A few minutes later, he reached out for the cup, but didn't get his hand all the way to the cup. He then lifted his (empty) hand to his lips, and began making drinking motions. After a few moments of trying to drink out of his empty hand, he said, "I can't seem to get any thing out of it." I put the cup in his hand, and he managed to drink a little, very shakily.

    Throughout the appointment, he kept displaying a very tenuous grip on reality. At one point, he started groping towards the floor, saying "I can't see where they went when they dropped." Apparently, he thought he had just dropped a handful of his business cards, although he'd never had any. At another point he reached out to me, with an empty hand, and saId, "here, do you want this?" I went through the motion of taking something from his hands, while asking "What is it?" Apparently it was a newspaper he had finished with, and he was perfectly satisfied that I had taken it out of his hands.

    He demonstrated ample symptoms of this kind during his psych appointment. He was much less aware of current reality than he usually is at these appointments -- when asked the date, he said it was January 6, rather than March 6, and when asked where he was, he replied "University of Michigan assisted living." He also made several small speeches to the doctors that trailed away into total incoherence and confusion. So they got a clear view, at least, of how confused he was.

    I explained to the psychiatrists (resident, med student, *and* attending physicians) that the confusion, the leaning, and the hallucinations were largely new, that he hadn't shown those symptoms just a couple of days ago. They spent a while conferring about what it might be. Poring through his records from the nursing home, they found that he'd been given vicodin over the past couple of days, for reasons unknown. That certainly might be what's making him loopy, but it also might be an infection or several other things. So they ordered a set of blood tests.

    At this point, Stan totally surprised me by flat-out refusing to have his blood drawn. He says he's had enough blood tests. I didn't feel that I should try to force him against his will, so I simply sent the blood draw order back with him to the nursing home, in the hope that they can figure out how to get him to comply.

    Finally, to complete the day, it took almost 45 minutes for the care transport folks to pick him up once the appointment was done. During that time we sat awkwardly, with him occasionally saying something totally nonsensical. At one point, he told me that I had dropped my green balls, and that they were rolling under the chairs. At another point, he asked me what I had just said about hot dogs. I hadn't said a word, and I told him so. "That makes sense," he said, "since you're a vegetarian."

    All in all, he is very confused and odd. I will talk with the folks at River View, and hopefully with the physician there, to see if anything can be done. More as I learn anything... -- Nathaniel

    Wednesday, February 15, 2006 4:15 PM

    Just a quick note: Today Stan went to the University of Michigan's Nuclear Medicine department, where he had an appointment for a thyroid scan. As is now the norm for his medical appointments, he was transported in a wheelchair van from Huron View to the appointment, and I simply met him at the appointed place and time.

    He arrived a few minutes before me, and seemed very lively and lucid. (Today is probably a good day to chat with him, if you're so inclined!) Upon scrutinizing his paperwork, I was amused to discover that the doctor for his procedure today is named "Camera 6." I knew that the automation of medicine was progressing rapidly, but I hadn't realized that Nikon was manufacturing cameras with M.D.'s!

    Fortunately, Lyndsay, the woman who operated Dr. 6, appeared to be an actual human being with a pleasant "bedside manner." I guess that's become a specialized (and perhaps endangered) skill in itself! -- Nathaniel

    Monday, February 13, 2006, 8:38 PM

    For the last 4 weeks, I've been traveling almost constantly. It was 4 separate trips, so I managed a quick visit to Stan between each, but it still feels like I've been neglecting him. Anyway, as of last night I'm home for at least two weeks (!!!), and I went to visit him this evening. I brought my usual sacrificial offering -- a pair of egg rolls, of which he only happily devoured one tonight, probably because I arrived just after dinnertime.

    He seemed livelier than he has in recent weeks, which was a pleasant surprise. But I visited him long enough (about 90 minutes) to realize that this isn't entirely a good thing. He is strong enough -- just barely -- to stand up and take a few steps, and he does this whenever he has a mind to do so, consistently forgetting just how weak he is. (Three or four steps is pretty much his limit, which usually leaves him collapsing in the middle of the room.) The staff now as things set up so that whenever he gets out of bed or his chair, an alarm goes off, so they can check on him. During my 90 minutes, he got up to start wandering at least a half dozen times, setting off but not noticing the alarm each time. But he can't (or won't) remember that he can't just get up and take a stroll.

    An even grimmer symptom of his renewed energy was his request that I "fix his computer." This is something that I've come to dread, because there's never really anything wrong with his computer. Usually, my "fixing" his computer consists of closing a lot of windows he's opened by accident, and restoring his email program to its "normal" display, as opposed to the bizarre condition he has managed to get it into. Today I did that, but then he was energetic enough to actually try to use it in my presence. I then watched him for long enough to really lose all hope that I can ever "fix" anything for him again.

    At this point, his Parkinson's is so bad that it can take him several minutes just to move the mouse to a desired point on the screen, during which time he'll forget what he's doing once or twice. By the time he finally gets the mouse to the right place, he has clicked on a half dozen other things along the way, most of which cause something to happen that he cannot begin to understand.

    Once I got him back into his email reader, he wanted me to watch him sending a letter to the editor, so that I could help fix the problems he was encountering. I said fine, so I watched while he squinted for several minutes at the various one-line summaries of a few dozen spam messages he had received. He kept looking them over until I asked him what he was trying to do -- and he said, "send a letter to the editor." I tried to talk him through clicking on the "New" button to send a new message, but he would have no part of it. I finally determined that what he was trying to do was find one of his old messages that he could try to forward somewhere else, with perhaps a few changes, as a new letter to the editor. So I guided him to his "Sent" folder as a good starting point, but it turns out that his "Sent" folder is now more or less 100% incomprehensible gibberish addressed to email addresses that are also clearly gibberish. He must find the computer very frustrating indeed at this point, but he still wants to try.

    Anyway, I really wanted to leave him with *something* that felt useful, so I did something that is counter to all the rules of email etiquette. I set up his email *signature* to be one of his letters, followed by a rather large gif image of the infamous Ann Arbor News article about him. This means that whenever he clicks the "New" button, he'll have a body filled in with one of his precious letters, and all he'll need to fill in will be the "To" and perhaps the Subject, and change a few things if he likes. I predict he will never again be able to do that much, and that he's sent his last message, but it seems very important to him that he continue to try.

    Finally, when I was leaving, after having just helped him back to bed, something *truly* strange happened. After I helped him sit down, he became concerned that part of his penis had fallen off. (I kid you not.) I told him there was nothing on the floor, no blood, and that in general I thought it was extremely unlikely. He asked me if I'd take a look (inside his diaper) anyway, but I declined, telling him that's what the staff was paid for and i wouldn't want to disappoint them. He laughed, and said goodbye quite cheerfully. As I was walking away, he called out, happily, "it's OK, I found it." What a relief, eh?

    Anyway, the good news is that we're all here, and still in one piece. For now. -- Nathaniel

    Wednesday, February 1, 2006, 1:43 PM

    I just got a call from Riverview with the latest on Stan.

    After dinner last night, Stan became "increasingly anxious" -- constantly calling for help, and in the words of the nurse who called, "seeming like he needed company." When they went to sit with him, he got confused and said that he needed to go home, that he didn't want to be here any more. Then, while they were trying to get him back in touch with reality, I guess, the police showed up -- he had called 911 and told the police that he was being kept against his will and his feet were tied up so he couldn't move them.

    Needless to say, the police didn't arrest anyone, especially when they saw that his feet weren't tied up and he admitted that they hadn't been tied up, he "just couldn't move them." After the police left they called the doctor, who prescribed a shot of atavan. But Stan quickly calmed down after that and said he didn't want the shot. He seems fine today in terms of understanding where he is, etc., but he still says he is feeling very anxious. I recommended that they consider oral atavan, which is probably easier to convince him to do. They're encouraging him to hang out near the main desk, where he has someone to talk to if he wants and seems calmer.

    And that's what I know right now. -- Nathaniel

    Sunday, January 8, 2006, 1:43 PM

    We visited Stan twice yesterday (the first time having been mistimed to coincide with his physical therapy). He's a wee bit better, I think. He had another fall yesterday, and they're trying very hard not to let him get out of bed -- even to get into a wheelchair -- without help. He's not very cooperative about this, as you can probably imagine, and his latest fall was when he decided to try to make it from the bed to the toilet without asking for help. It's very discouraging for him, of course. He has an amazingly positive attitude most of the time, although that may be simple force of habit at this point.

    His new room is a little bit closer to "homey" now, too. Nearly all of his pictures are up -- the staff had done a remarkably good job, actually, and we finished it -- and his phone is now *properly* set up (with a simple phone that he knows how to use) so he can take calls. His full cable and Internet won't be restored until Thursday, but meanwhile they've hooked him up with the facility-wide basic cable. It has CNN headline news, at least, so he's reasonably happy with that, and we brought him a whole bunch of video tapes too, not knowing he'd even have that much TV before Thursday.

    Overall, though, he remains forgetful and weak. He hasn't had his first shot of aranesp yet, so we're still hoping that he'll perk up more when he gets it.

    He seems fairly stable, enough at least that I am inclined to go ahead with my business trip Tuesday-Friday of this week (to glamorous Provo, Utah). Trina isn't going with me, so she'll be around if anything comes up.

    He'd love your calls, of course: 734 769 2328. Thanks.

    Friday, January 6, 2006, 3:52 PM

    Today, Stan had an appointment with his (wonderful) nephrologist, Dr. Cramer. This time, the folks at Care Transport handled their end of the process perfectly, so we simply met him at the doctor's office and said good bye when they came to transport him back to River View.

    The news about his kidneys is basically good: they still have their ups and downs, but basically his kidney function hasn't gotten any worse for years now; it's more or less as good as it has ever been since his surgery, nearly six years ago. The growth on his kidney, which they found last year and think is probably cancer, doesn't seem to be any bigger than it was nearly a year ago. His kidneys are not going to let him down, I suspect.

    Now, having said that, Dr. Cramer did change several of his medications. He's going off potassium for a while, though they'll monitor his blood levels (they were actually a bit on the high side). They're giving him sodium bicarbonate (baking soda) tablets, to reduce the acidity of his blood. And, most important, they're reinstating the weekly Aranesp injections. (A special shout-out to Judith Glasser for hitting *that* nail right on the head!) Dr. Cramer was surprised to hear they had been stopped. As best we can reconstruct, they were probably stopped because the doctor at the nursing home thought he was getting them for iron, and so discontinued it when his iron level was fine. But he was really given it for kidney-related reasons. If it works like it did the last time he was put on aranesp, he should become a bit more clear headed -- let's hope so, anyway.

    Finally, Dr. Cramer observantly asked why Stan had an IV left in his arm, ready for instant attachment. Trina and I hadn't noticed it, and Stan was completely unaware of it. Our best guess is that the hospital (yesterday) forgot to take it out. We left it in him until he got back to River View, in case they had it in him for a reason. But I just now talked with the nurse at River View and I think she will be removing it soon.

    His phone should work fine continuously, because we're using a wireless portable, but they expect to have the phone line moved to his new room (212) by tomorrow night. I'm still working on the cable/Internet service; Comcast customer service is so backed up they won't even let you hold, but ask you to call back later.

    I suspect that in my last few messages I may have been understating how badly he seems to be doing. He can't walk more than a few feet, even with the walker. He is losing all understanding of his own position in space, which leads to falls (he fell again in Dr. Cramer's office, while trying to get on the scale to be weighed) and accidents (you don't want to know, I promise). He's also more and more scattered and confused, and his speech less clear. While we were in the waiting room, he asked for a drink of water, so I got up and found him a cup and filled it with water. When I came back and sat down again with him and Trina, I offered him the water. "No thanks," he said, obviously completely unaware that he had just asked for it. A few minutes later he again said he'd like some water, and was startled when I instantly handed it to him. Trina and I aren't always sure how much he does and doesn't understand any more.

    Stan nowadays reminds me of a joke he used to tell, in which a doctor tells his patient that he has two pieces of bad news. The first, he says, is that the patient has Alzheimer's. The patient nods his head, absorbing this news, and then asks for the second piece of bad news. "I'm afraid," said the doctor, "that you have Parkinson's Disease." The patient nods philosophically and says, "well, at least I don't have Alzheimer's."

    Alas, the joke is less funny every time I think of it. -- Nathaniel

    Thursday, January 5, 2006, 10:32 PM

    Trina and I just got back from visiting Stan. (Actually, we stopped for dinner on the way home.)

    He is now settled back into the nursing home, but he's not doing well at all. Frankly, the change in just the last 24 hours is dramatic. He can't even walk from his bed to the bathroom now, which is about 10 feet. He's more and more just freezing up, which is frustrating and frightening for him. He's also disoriented and confused, and he knows it -- he commented on how confused he feels.

    While he was away at the hospital today, the nursing home -- as they had previously discussed with us -- moved him to a different room. They did this so that he would be closer to the nurse's station. They actually did a pretty good job of moving him -- tried to get things in the right place, even got some of the art up -- but Trina and I spent a while trying to make the new room more homey. We have to go back tomorrow with a hammer and some picture hangers and a few other things. He also has yet another medical appointment tomorrow morning, for which we'll meet him at the doctor's office.

    The move to the new room has a couple of other consequences. The nuisance is moving his phone and cable -- at the moment, they're still in his old room. However, I went out and got a wireless phone with a separate charging station, and I put the base station in his old room and the charger in the new, which means that he DOES have telephone access. I'll find out tomorrow morning when he'll get cable (and hence Internet) and when the phone service will be moved to his room. Meanwhile, though, because of the wireless he can still take calls at 734 769 2328.

    More as it develops.

    Thursday, January 5, 2006, 5:16 PM

    This afternoon, Trina and I went out to do several errands and then meet Stan at the emergency room, where he was when we left the house, having been told that he was being admitted. However, before our errands were done, I got a call from the ER physician.

    They did a CAT scan on his head, and compared it with one taken in the end of November, and confirmed that he has definitely had a small stroke since then, though not necessarily in the last day or so. They also found that he has a *new* heart murmur. However, they don't think *either* of these things explains why he has been having so much more trouble walking. They think that's the Parkinson's, and there's nothing they can do about it. However, they have put him on Plavix, a blood thinner, to try (I think) to prevent additional strokes.

    And, given that there wasn't much else they could do, they have sent him back to the nursing home. He should be en route as I type this. We finished our errands and went home, and are planning to visit him at River View tonight, once he's back there.

    I'm sure he'd love phone calls once he's settled in again -- 734 769 2328.

    Thursday, January 5, 2006, 2:49 PM

    Yesterday (Wednesday) we had two Stan appointments: In the morning, we had his quarterly "care conference" with the team from the nursing home, and then in the afternoon he had an appointment with his primary care doctor.

    Everyone is doing the best they can, but the reality is that he's fading steadily. That's really the gist of both appointments. But we got to go over his medications in detail with both the nursing home and the doctor on the same day, a rare treat. As a result, he's been taken off antivert, which we didn't even know that they had but him on (in October). I think they had hoped it would reduce his falls, but it doesn't seem to have done so.

    The tradeoff between the higher and lower doses of Sinemax is a difficult one. With too much Sinemet, he develops side effects (uncontrolled movements) but with too little, he can move less and less. And they've scheduled a new appointment with the urologist, because they are afraid that his various ailments (particularly the Parkinson's and the prostate enlargement) are co-conspiring against his bladder.

    He still talks about what he might do when he gets better. At the care conference, one of the team members made it pretty clear that he isn't going to, but his response was to grimace and, I'm sure, put it out of his mind to the maximum possible extent.

    Then, this morning (Thursday) we got a phone call at 7 AM from the nursing home. They were sending him to the hospital ER, with fears of pancreatitis, sepsis, and another stroke, but saying, oddly, that he had no acute symptoms or discomfort. Given that, I was planning to meet him at the hospital in a couple of hours. Before that could happen, however, I got another phone call, this time from the doctor in the ER. He wanted me to tell him why the nursing home had sent Stan to the hospital. I told him everything I knew -- i.e. the first part of this paragraph -- and suggested that he call the nursing home if he wanted to know why they had sent him. He then asked me a lot of questions about Stan's "baseline" and generally gave me the impression of being totally confused about why Stan was in the ER.

    I decided to give it a few more hours, and then called back again. The latest news is that they're going to admit him (though I don't know exactly why) and he's waiting for a bed. We'll be heading over to the hospital shortly, so I'll probably have more news in a few hours.

    Tuesday, January 3, 2006, 7:06 PM

    Picture a wind-up toy, slowly winding down.

    Today, Stan had an appointment at the Turner center, on the U of M medical campus. Two visits ago was probably the last time we will personally transport him from the nursing home to the doctor's office. He has his ups and downs, but it's no longer safe to rely on his ability to get into and and out of a car, even with our assistance. Moreover, he can't usually walk more than a few steps any more, so a wheelchair and a paratransit service have become necessities, pretty much.

    So, today, I drove to the Turner center to meet him there. When I found him, he was sitting near the hot chocolate machine, content both with the chocolate and with his ability to "put one over" on the paratransit folks. He had apparently felt good enough this morning to use his walker to casually stroll outside to the van and get into it, to the probable confusion of the driver. Thus instead of waiting for me in a wheelchair, he was waiting for me with only the walker, which I'm sure felt to him like a triumph of the will; I was, briefly, glad for him for this small victory over "the system."

    Only briefly, however. It turned out that he had pretty much exhausted his ability to do his own stunts for the day. To make a long story short, he ended up in a heap on the floor about halfway between the hot chocolate and the examining room. A wheelchair was found, and for the next three hours I got to lug him around in a wheelchair, but dragging a walker around with us.

    I usually tell people that he has his good days and his bad days, or perhaps his good hours and his bad hours. Today, though, a doctor's appointment was long enough for the doctor to see both his good minutes and his bad minutes. He really comes and goes.

    The appointment was inconsequential -- a followup to a followup, with another followup scheduled two months hence. Afterwards, I wheeled him to the hospital cafeteria for lunch. He wasn't hungry, but of course consented to a bowl of ice cream. ("Eat dessert first" should be his motto now, I think.) Then we called the transit van to take him home.

    I met him back at the nursing home, and installed our latest attempt to help him use the Internet -- a new Mac Mini. As many of you know, he has been on Windows for several years now. However, he's been less and less able to get anything to work, and I'm hoping that he may find the Mac easier -- both because he learned to use a Mac long before he learned to use Windows and, of course, because it's just plain easier to use. I'm not terribly optimistic, though. He has a lot of trouble manipulating the mouse at this point.

    His spirit remains remarkably good. Whatever else you say about him, he is the most determinedly optimistic person I have ever met. The doctor asked him a lot of questions about his mood, and he said that he felt pretty good, "considering the circumstances." The doctor looked up, clearly assuming that he meant his health and mortality, at which point Stan delivered a brief diatribe about the evils of the Bush administration and how it challenges even his ability to be optimistic.

    That, I thought, is Stan Borenstein in a nutshell. -- Nathaniel

    Friday, December 2, 11:15 AM

    [From Trina]

    Stan is back [home] at Riverview, and sounds pretty good.  He's very agitated, though, because he didn't like the meal they tried to serve him for lunch.  Or the alternative.  He also reports that he got very confused a week or so ago, because he woke up in a place he didn't recognize.  When he opened the drawers and things, everything of his was right where he would have put them, but he was sure it was a different room.  Now he believes that one of the nurses came in and cleaned up, moving just enough things around so that he didn't recognize his room.  He also believed, he said, that Riverview was building a new building, and he was going to be moved into it.  I said these things must be very upsetting, or frightening.  He said, "Oh, no.  Just very weird."  He also told me that he keeps hearing Debbie talking, but when he looks, it's always someone else.  I said that I'd be very surprised if it *wasn't* somebody else.  He doesn't seem upset about these things, but wanted to mention them.

    The hospital talked to Riverview and insisted that do more occupational and physical therapy with Stan.  To my mind, this is a good thing, mostly because it'll give him something to do several times a week.  I'm sure to their minds, however, it is a real nuissance, since it won't do him a whit of good, and takes their minimal resources away from someone else.

    Well, if you want to reach him, he is at the usual number.  Love, trina

    Tuesday, November 29, 11:04 AM

    [From Trina]

    I just got a call from Stan.  He told me the hospital was going to send him home, and he wanted to know if I thought he ought to go back to the "assisted living place".  I asked him what other choices he had.  He was unable to come up with one.  He liked the breakfast at the hospital even better than the ones at "the usual place".

    This email was just interrupted by a call from Dr. Burkhardt, the intern.  He says Stan MAY go home today, but it may be tomorrow instead.  We talked about Stan's recent history, which he had not been able to glean much of from Stan, and promised to call me again if there were any other informational gaps.

    All the news as it happens  -- Trina

    Tuesday, November 29, 10:19 AM

    [From Trina]

    I got a call last night that Stan had been taken to the Emergency Room due to falling and confusion.

    When I talked to him this morning, Stan sounded much better than he did yesterday when I took him to a device check.

    Yesterday, he was clearly edemic again, could not walk, and was largely incoherent.  I was not surprised when I got the call last night.

    Today, he is not wholy making sense, but speaks with more energy.  I have a call into his doctor, Burkhardt.  I also had a call into the ER doctor, but no one ever called me.  His nurse's name is Nicky. Stan is in room 1271, bed 1.  His phone number is 936-7127.  I'm sure he'd like a call -- it would be a short one.

    All I was able to get from Nicky is that he fell and they are looking to see if he fell "because of his heart".  All I got from Stan is that he is feeling much better than yesterday, and they are trying to get the water out of him.

    More if it transpires.  Love, Trina

    Sunday, October 20, 2005, 11:15 AM

    Since Stan was admitted to Riverview nursing home in April, he has mostly been doing quite well. The staff is caring and likes him, and he likes them and the food. We visit once or twice a week, and talk on the phone almost daily. I believe he has been hospitalized only three times since April. This is a big improvement over his dozen or so hospitalizations in the first three months of the year, and seems to confirm our impression that most -- but not all -- of those admissions were due to panic.

    This arrangement has worked out wonderfully for me and Trina, in that it has probably eliminated 3/4 of the things we used to do for him. It's worked out well for Stan too, mostly -- having someone nearby whenever he has a moment of panic is clearly something he appreciates a lot.

    Nonetheless, his condition continues to slowly deteriorate. While we're generally quite happy with the nursing home, one thing that they don't seem quite as good at is noticing when his meds need to be changed. For example, the cardiologists say he should be weighed every day, and action taken if his weight goes up more than 5 pounds. Well, they weigh him every day, assiduously, and write it down, but they don't necessarily notice what it means, which has allowed him to gain as much as 20 pounds before we noticed and intervened. Similar considerations apply to his worsening Parkinson's -- they always give him his meds, but they don't necessarily notice when it's time to up his meds.

    At the moment, it's time to up his meds. His Lasix was upped a few days ago, in response to our inquiries about weigh gain. However, in the last week or so, his Parkinson's seems much worse. He has begun (sometimes) to unconsciously bob his head up and down like a yoyo, or to lean it way over to one side with no apparent awareness that he's doing so. He has an appointment with the right specialist on Tuesday, but the nurse thinks he may be approaching the maximal safe dose of the Sinemet. So they may not be able to control his Parkinson's symptoms, even as well as they have, for much longer.

    That's about all the news. He's always happy to hear from you -- once again, his vital stats:

    Stanley Borenstein
    355 Huron View Blvd.
    Ann Arbor, MI 48103
    (734) 769-2328 (or PEG SOYA FAT)
    He's having more and more trouble using his computer, so I can't really recommend that you contact him by email at this point.

    Sorry that these updates have become so scarce -- mostly it is because the pace of news has slowed a lot. I'll try to write more often. -- Nathaniel

    PS on DRUGS: One thing that has happened, since he's been in the nursing home, is that we no longer have to prepare all his medications, a very time consuming process. The flip side, however, is that we're less aware of what he's taking at any given time. We (mostly Trina) recently did some research (after his most recent hospitalization) to see what had changed, and try to make sure that nothing had changed by accident, as we've seen that happen several times when he was hospitalized. It's really hard to be sure, but I think we have a handle on what he's taking now, for those of you who are pharmaceutically inclined:

    Since April, they appear to have taken him OFF the following daily meds: Aspirin, Spironolactone (Aldactone), Potassium, and ferrous sulfate.

    They've shuffled around his vitamins -- he may be getting a bit less balance, but he's getting a lot more B vitamins, though only half as much E. I don't think he's getting nearly enough Vitamin C, personally, but many folks think I'm a nut on that subject.

    They seem to have kept all of the following the SAME as what he was taking in April: Flomax, Protonix, Hydralazine, Amiodarone, Toprol, Imdur, Lipitor, Zetia, Remeron, and Celexa.

    Two that they've kept him on but have to adjust the doses regularly: Sinement and Furosimde (Lasix).

    Finally, they've added the following new meds: Levothyioxine, Meclizine, Tylenol, Trazodone, Alprozolam, Ducolax, and Heparin.

    Anyone who wants to go into his meds in more detail, feel free to contact me. -- Nathaniel

    Friday, June 17, 2005, 6:35 PM

    Well, it turns out that Trina's Tuesday report had one teensy weensy little fact wrong:

    > Stan is scheduled to go back to the Internist Friday.

    So, today I took him in for this alleged appointment, only to find that it had actually been scheduled for Thursday. Given the critical nature of the doctor's concerns on Tuesday, they managed to rearrange things to attend to him, but we waited over 3 hours in the process, and I missed yet another work-related appointment while they concluded, apparently, that none of his usual doctors were in the building.

    Finally, they found a (random) doctor who could spare the time to conclude that -- hooray! -- the new medication had precisely the desired effect, a dramatic loss of fluid and weight. I had already suspected as much based on three subtle clues:

    1. He was much more alert and spry.
    2. He had lost 20 pounds in 3 days.
    3. He spent the last 48 hours spouting like a fountain, night and day.
    But, of course, an M.D. was required to really put the pieces together.

    Anyway, the new orders are to stop giving him the new medication, Zaroxolyn, but to resume it if his weight goes over 200. His Lasix continues at 60 mg/day, with three days of triple potassium before returning to 20 meq/day. And they want us to follow up next week, and repeat all the lab work again in ten days, to check on his potassium levels.

    His mood is very good -- he is very happy to hear that he is losing weight and doesn't need to go into the hospital. In his mind, that means he is "getting better." His phone number is still (734) 769-2328, PEG-SOY-BEAT or PEGS-MY-BEAU. Don't count on his reading your email, however, as he's having more and more trouble with that. -- Nathaniel

    Tuesday, June 14, 2005, 1:45 PM

    [from Trina]

    Stan had two d'rs app'ts yesterday. The first was with the psychiatrist. Nathaniel will write if there was anything noteworthy there; but apparently Stan did tell the doctor that he was feeling better and better emotionally and that he hadn't had an anxiety attack for two months.

    Since I had discussed his anxiety attacks with a nurse at Riverview just a couple weeks prior, I was very surprised to hear that.

    The second appointment was chaufered by me. We saw his Internist. The Internist was very alarmed about his edema. He said he should have been treated (Lasix) MUCH more aggressively. He wrote a note to Riverview to keep his weight below 195 always, upped his Lasix temporarily, and added a booster medication. Stan is scheduled to go back to the Internist Friday. If Stan hasn't made enough progress by then, he goes back into the hospital. He also told the doctor that he was having bouts of anxiety.

    During this visit, the doctor used the phrase "heart failure" about a dozen times, so Stan is feeling very gloomy. A call to cheer him up a bit (well, to distract him) would be very nice. We added a second phone to his room, so he can talk comfortably from either his chair or his bed.

    Sunday, June 12, 2005, 3:30 PM

    [from Trina]

    I took Stan in on Friday for his Urology appt. Dr. Roberts recommended an Xray (which we did then), and an ultrasound (Aug.4 @ 1pm). He believes the kidney mass is NOT cancer at all, but a simple cyst. He expects the ultrasound to confirm that. The Xray was to monitor the status of the kidney stones. If they get big enough, he will send Stan in for shockwave treatment. It took us a minute or two to convince Stan that shockwave treatment was different than shock therapy.

    The increased (not by much) lasix has helped a little, but Stan is still -- to my mind -- alarmingly edemic. I told everyone at Riverview that would stand still long enough of my concerns. I MAY have convinced them to call the doctor on Friday. I guess I'll find out soon. To their minds, Stan is not alarmingly bloated. Afterall, medical care is right there if he does balloon up; but, still I don't like it. I also think it makes him more easily fatigued.

    Fatigue comes very rapidly now. Our trip to the Urologist required very little walking on his part, but even so he was too exhausted to do even that. I ended up pushing him in a wheelchair most of the time. By the time we got back to Riverview, He couldn't walk from the elevator to his room. I watched him get grayer and grayer as a nurse hunted up a wheelchair for him for the last 60 feet to his room.

    For the last several months that Ezra lived, just having a conversation would wear him out, so he planned his days very precisely to get all he wanted to do done. Stan, of course, doesn't plan, but if his every-two-hours trips to the bathroom require a nap afterwards, it's not surprising that he's not bored silly.

    Thursday, June 9, 2005, 9:00 PM

    [from Trina]

    Just to let you all know, Stan has a touch of pneumonia. He feels fine, but cannot be convinced that he's not contagious. The pneumonia was detected Monday, and an antibiotic was issued Tuesday, but the nurses noticed that it was contraindicated by some other of his meds. A new prescription was issued Tuesday, arrived yesterday, and again was discovered to be inappropriate. Today, his nurses are optimistic, he will finally start on a suitable treatment. Meanwhile, In the short time I was at Riverview yesterday, I heard him warn nurses five times that he was allergic to penicilin. He seems convinced that they're going to give him penicilin.

    I asked again about my edema/lasix concerns. It is my impression that he IS being well monitored (the night nurse goes into his room every 30 minutes and puts his feet back up on the bed), but that non-critical care has a turn around time. If Stan swells like a water balloon, it is soon discovered, but it could be 24 hours before he is seen by a doctor. It is then up to 24 hours before he is medicated. I suspect that is not harmful, but it is different than the immediate action that Nathaniel and I were able to take at home.

    Stan and I went out to dinner last night (Chinese!), and I filled out a couple dozen contest blanks for him. He is trying to win some hotdogs. He says he can keep them in Riverview's refrigerator and cook them in Riverview's microwave. I'll let Riverview worry about that when he wins the hotdogs. He initially asked me to take him to Meijer to deposit the blanks, but by the time he'd gotten back into the car after dinner, he was way too tired. I went in, set him up in his chair (which I had to remind him to recline), checked out the tape recorder Nathaniel and I had given him (he dropped it -- it's busted), and talked to the nurse. ( I think I'll check out a FisherPrice (or some such) recorder that may be robust. It will also have bigger, clearer buttons.)

    Wednesday, May 4, 2005, 12:10 PM

    Last night, we took Stan out to dinner. We didn't plan on it, actually -- hadn't even thought about it, actually -- but when I showed up at 4 to pick him up for a doctor's appointment, the first thing he told me was that he had already told the nursing home that he wouldn't be there for dinner. They looked to me for confirmation and I just nodded my head; it seemed like the thing to do, so I alerted Trina while parking the car.

    [And since you'll be wondering about that doctor's appointment: It was with Dr. Albin, the Parkinson's specialist. He told Stan that in terms of Parkinson's he is doing remarkably well, "given all your other illnesses." Dr Albin also told us that the meds seem to be working about as well as he thinks they can, but if the symptoms get worse we should call him back to make an appointment to raise the dosage. What this tells me is that his difficulty walking -- he can now barely manage *with* a walker -- is due to his heart disease, not Parkinson's.]

    Anyway, I think the reason I just nodded my head was that I immediately assumed that he was starved for company and attention, and I just couldn't shake my head no. Later, the truth came out: The menu for tonight at the nursing home featured tomato soup. Stan, of course, doesn't like things that have the word "tomato" in their names. Trina was quick to point out that a couple days ago he was raving about the tortilla soup he was eating, which was tomato based. Of course, I noted, the tomato was a lot more diluted in the tortilla soup, to which Stan chimed in "yes, by the tortillas."

    After dinner, I went back with him to his room to "fix his computer." This time, when I had asked him the symptoms, he said he couldn't get rid of the red underlining. Knowing that he had been dipping his toe in the web recently, I asked him if the problem was on the web or in email, and he told me he wasn't sure. So I was pretty much stumped until I got back to his apartment, where it became instantly clear: The newer version of Eudora that he is now using has automatic spelling correction, and it didn't like the word "Borenstein" so it underlined it and made it red. Stan didn't want his email going out that way. So I "fixed his computer" by assuring him that it wouldn't. (And I also added "Borenstein" to his dictionary, for what that's worth.)

    So anyway, on to the Subject line of this email... Trina and I have been talking (with each other and with some of you) about whether there was anything that we could do that would really make his remaining days more comfortable. We have zeroed in on this:

    If you've never seen one before, it's called a "lift recliner." It's basically a recliner, but with automatic controls that allow someone frail to get up out of it again. He's always loved recliners, but he hasn't really been able to use one in years.

    These bad boys usually go for $800 and up, plus $100-$150 shipping, but by prowling the net for a little while I made a startling discovery: Florida is the used lift recliner capital of the world! So today I ordered him one, for $397 (plus shipping), as a "housewarming gift." But I think Stan would appreciate it even more if it were a housewarming gift from "all of us" in some broad sense. So.... I was hoping that as many of you as possible could send me housewarming cards ASAP, to be given to Stan if possible at the same time as the recliner (probably next week some time). If you're in a position to chip in with a check to help with the cost, that would be great, but please send a card ASAP either way. Although he can receive mail directly, in this case please send the housewarming cards to:

    Stanley Borenstein
    c/o Nathaniel Borenstein
    916 Patricia Ave
    Ann Arbor, MI 48103
    Thanks. -- Nathaniel

    Monday, May 2, 2005, 11:40 PM

    It has been a quiet week for Stan, but although the last week has been only mildly eventful, I feel overdue to report. Stan has been home from the hospital (i.e. back in the nursing home) for a week now. He is doing reasonably well, but ever more frail. He really can't walk more than a few steps without a walker now. Only a few noteworthy events come to mind from the past week:

  • I don't remember the exact day, but later in the week I had a phone call with the psychiatrist who comes to Riverview weekly. He doesn't do therapy, but he does monitor meds. I think I persuaded him to increase Stan's dosage, but I haven't yet verified that he did that.

  • On Friday (?) evening, we took him out to dinner at a Mexican restaurant in Ypsi. In choosing that restaurant, I remembered that we could drive the car right up to the door, but I forgot that there were five steps up and five steps down, going in and going out. He managed it, but it looked like it took just about everything he had in him. (On the other hand, he seemed to have a great time; tortilla soup is a new favorite of his, I think.)

  • On Saturday morning, I awoke with the sudden realization that it was the last day of April, and Stan's old apartment was still full of his junk. I managed to wait patiently for an hour until Trina woke up to give her the bad news; we had both entirely forgotten about it, and were otherwise in severe danger of having a relaxing day. Anyway, with help from Gettye, we got his apartment unloaded. There were just a few things that we decided to bring to his new place -- we had already culled through it for that purpose, so the things left behind were mostly household items. So mostly we spent the day organizing and distributing a substantial amount of material to various charitable agencies around Ann Arbor.
  • By and large he is being cheerful and occasionally ambulatory, but I think he spends most of his day dozing and watching television. Mentally, he's still mostly there most of the time, although every now and then he says something remarkably detatched from current reality. His appetite is good -- last night I watched him devour a pint of matzoh ball soup. (Actually, soup seems to be his favorite thing much of the time -- hot & sour, tortilla, matzoh ball, it seems like a trend.

    Anyway, he's continuing to fade slowly and stubbornly. He'd love your soup, your visit, or your call: he's still at 734 769-2328, "PEGS-MY-BEAU". Or your cards, of course:

    Stanley Borenstein
    355 Huron View Blvd. #217
    Ann Arbor, MI 48103

    I think I'll try to report weekly if there aren't any crises to require more frequent reports.

    Monday, April 25, 2005, 10:20 PM

    [from Trina]

    I called Stan when I got back from classes, and he called me back when they told him when he'd be leaving. I was just leaving 1/2 hour later for the appointed hour, when I got a call from the hospital saying they were sending him back to Riverside in an ambulance. I wonder if this is standard? Anyhow, Stan called me back an hour later (by now just after 5pm) to ask me to bring him some Chinese food because the meal they made for him was terrible. It was Stroganoff and Quiche, he said. Fact is, taste has nothing to do with it. There is no way he'll eat anything named Stroganoff or Quiche.

    I brought him some food and hung out for about an hour. He's reasonably chipper. He's also still very puffy. He has a romantic interest in one of the nurses, but she told him she'd get fired for dating a patient. He wants us to rent her an apartment in our hypothetical rental property so he can date her without Riverside knowing. Right. The nurses there concur with Nathaniel's earlier assessment: his edema is simply going to be harder and harder to control. He came out of the hospital this time with more lasix, and a calcium supplement. The night nurse, who says Stan's always very sweet, says he buzzes her constantly at night. She is sure he is anxious and that most of his problems are panic attack precursors. I asked her to ask the doctor if upping his "anti-anxiety" medication might not be a bad idea. He is currently on very small doses.

    The nurses said he didn't like the food (not that he ever tries it), and that when he tells them what to make, he then claims he isn't hungry. Sounds kinda' passive/aggessive. Anyway, they asked me for pointers, and told them he wouldn't eat anything with the words cheese (except pizza), cream, or fruit in the title. That should help.

    One unfortunate bit of news -- he is not to leave the building unattended by a family member. The staff views him as unsafe out there on his own, and I am afraid I agree. Watching him get himself to the bathroom was a clincher. So, if he wants to attend Gray Panther, AATA, or any other meetings, we'll have to ferry him about.

    He says he wants to work on his peace plans, but so far hasn't touched the computer.

    Monday, April 25, 2005, 10:30 AM

    I've been derelict about updating people about Stan's condition, but the weekend has been insanely busy and there isn't really that much to say.

    They didn't end up sending Stan home on Friday, or even Saturday, as it has taken them longer than usual to get his fluid level down. The decision to keep him on Saturday was particularly frustrating, as it meant he missed the Passover Seder that night. I brought him some Passover foods, however, and he seems to be in pretty good spirits. I talked with the doctor on Saturday -- it's once again Dr. Langewisch (pronounced "languish") who is looking after him. He is a really nice and compassionate doctor, with both a sense of humor and a happy toleration for Stan's jokes. He says there's nothing new to worry about, but that this is the way congestive heart failure goes. It may get harder and harder to restore his fluid balance as time goes on, and that may well be what finally does him in, but at the moment he is coming along fine, just not as quickly as in the past. As of Saturday they were optimistic about sending him home today (Monday). However, I'll have to leave it to Trina to report whether or not that turns out to happen, as I am writing this on an airplane bound for Boston. I'll be returning home Wednesday night, and will resume my own reportorial duties at that point.

    Thursday, April 21, 2005, 4:20 PM

    From Eliot

    So I talked to Dad earlier this morning, and he sounded tired, but ok. Just now I called the nurses' station, and talked to Sarah, who just started her shift, and hasn't seen him yet. But the upshot is: he's being treated for a UTI, and getting diuretics for the congestive heart failure. Otherwise, he's stable, and they're thinking of sending him home tomorrow.

    And that's all I know... Eliot

    Thursday, April 21, 2005, 7:40 AM

    From Eliot

    So I talked to Dad at 9 PM last night, when he had finally been admitted to a room in the hospital. He was very tired and uncomfortable, since he had been catheterized. He said something about a possible (urinary tract?) infection, but was rather unclear about it.

    He's in Room 7449, Bed 1. His phone number is (734) 936-7449.

    Wednesday, April 20, 2005, 8:50 AM

    Last night I visited Stan, having been out of town for several days. I thought he seemed quite good mentally (at least compared to the last few months), but very weak physically. He had apparently been complaining mightily about the food, and I had brought him sweet and sour soup, but by the time I got there with it he wanted to save it for the next day. So I spent a while chatting and helping him with the computer.

    It's not clear when he'll drink the soup, however, because within the last five minutes I got a call from the nursing home: He's on the way to the hospital, and this time it sounds potentially quite serious. He's complaining of abdominal pain and "heavy legs." The nurse says his edema has shot way up and his legs are swollen. Moreover, his hemoglobin count has dropped (from 9.1 to 8.1, Ithink she said), which makes them think he may be bleeding internally somewhere.

    So, the bottom line is that he's on his way to the hospital right now. More information when I know about it. -- Nathaniel

    Wednesday, April 13, 2005, 12:30 AM

    What a long day! This morning we delivered the second half of his posessions, more or less. (Basically everything but the computer, which I'm planning to bring in tomorrow. It's a much better one.) We also met with the admissions person (Lucy) and began the medicaid application process. All seems well.

    At this point, his room is beginning to look like Stan's room; we have most of his books, photos, videos, and wall-art in place. We've moved nearly all of the stuff from American House that we're going to move. There are a few significant items that he won't need anymore: dining room table & chairs, one standing lamp, one dresser, silverware, microwave, toaster, electric can opener, sheets, towels, dishes, hospital bed, ancient PC, rickety standing lamp, some artwork, etc. He won't have any trouble finding local granddaughters who want a few of these items, but anyone who wants to put in a claim, please do so.

    His mood is... interesting. He is being incredibly polite and appreciative, and is obviously trying really hard to be cheerful and not think about the fact that he's just been moved "permanently" to a nursing home. I am not sure precisely what he is thinking, but Trina fears that he is thinking of himself as newly much more disabled, rather than as having just moved another tiny step down a long and ongoing set of stairs.

    The next few days would be a VERY good time to call him. Trina and I are both leaving town tomorrow (Wednesday) -- she in the morning to help her sister in Albuquerque move, I in the afternoon to earn my salary in California, both returning on Sunday. Although all Stan's physical needs will be attended to and his possessions newly settled in, I expect that he would very much appreciate any phone calls. Again, his new number is 734 769 2328, or "PEGS MY BEAU". It should be operational as of tonight.

    Trina and I both have a very good initial impression of Riverview. The staff seem caring and attentive -- two of them have asked us if we were Stan's family before we could introduce ourselves, and the facility, though not the Ritz, is clean and cheerful. But when all is said and done, it's a nursing home, and for most of the people there it is the Last Stop. Anyone would have to struggle to be cheerful in Stan's shoes.

    Anyway, it's late and we're both flying out, um, later today. Give him a call when you get the chance -- "PEGS MY BEAU"

    Cheerio. -- Nathaniel

    Monday, April 11, 2005, 10:30 AM

    His phone, cable, and Internet service will be moved to Riverview tomorrow. (The cable "installer" will come between 2 and 5, and requires a check for $123.14 when he shows up at the door. I put "installer" in quotes because I know for a fact that the *most* he has to do is fiddle around in the basement for a minute.)

    Unfortunately, his phone service will be on an Ann Arbor exchange instead of an Ypsilanti exchange, so his number has to change. The new number is:

    734 769 2328
    which may also be remembered as
    I also can't resist pointing out that if you go to and type in his new number, not only do you get a list of such mnemonics, you also get 4 advertisements from people selling soy wax!

    The phone service should be operational by tomorrow (Tuesday) evening. -- Nathaniel

    Sunday, April 10, 2005, 7:30 PM

    From Trina

    I went out Friday evening to see Gettye's show in Detroit. When I got home, I found voicemail from Discharge Social Worker Deb, saying they had arranged with Riverview to have him admitted there on Saturday. I was unhappy about that, as Nathaniel was still out of town, but figured I go over to American House and collect some stuff to make him comfortable in Riverview, and install said stuff in Riverview, before I went to the hospital to collect Stan.

    Yesterday morning, I called Stan to confirm that he was being discharged that day. He didn't know anything about it. So, I called his duty nurse, Lisa, and she told me he would NOT be released yesterday. I figured, with much relief, that when I wasn't home, Deb scheduled his discharge for today (Sunday) or Monday, as I had made VERY CLEAR was our STRONG preference. I went out and bought some pavers for the back yard, and when Nathaniel got home from NY, we went over to Stan's to start packing him up.

    This morning (Sunday), we called Riverview to see if we could set up his room and stuff before he got there. We were informed that he'd been admitted yesterday. Did any of you get a call? We sure didn't. Well, there WERE some messages on our voicemail (which we didn't think to check last night), but my cell didn't ring. Nor did Nathaniel's. I KNOW for a fact that the hospital had all of those numbers. I am very unhappy that they moved him without letting us know, especially after I had been assured he wouldn't be. So, Stan spent his first 24 hours in a completely empty room with no support from any family. I am also totally mystified why HE didn't call us! Good grief, he calls if he needs to pee! Thank goodness Riverview provides sheets.

    When we got there today, Stan was asleep. This is no different from any of the last 5-10 times that I've dropped in where ever he's been. When asked how it was going, he said the food was better than either American House or the hospital. Glory be. We brought in a carload of stuff from American House, and assembled a couple of bookcases for him.

    His room is about 14x14. I get the strong impression that he thinks its very small. However, if you don't count the kitchen, bathroom, and front closet, this room is simply not much smaller than his apartment at American House. The room comes equipped with a wardrobe (includes four drawers and a hang bar), an armchair, a hospital bed, a three-drawer bedtable, and a rolling table (like in a hospital room). We put in the aforementioned bookcases, and will also bring over a small computer desk. With all that, he will still have a fairly comfortable amount of living space. The door to the shared half bath is steel. This thrills Stan. He is already talking about which papers he will tack onto it with magnets. We transferred his magnets from American House directly onto it. He also has (although they're still at American House) two wall-mounted magnetic boards, so he may have to accumulate yet more magnets!

    He definitely seemed a bit glum when we were there, but not whiny or anything. I suspect that once his computer is there, etc., he'll feel much better. He's also a bit bothered by an ambulatory zombie type that keeps walking into his room. Maybe she'll offer him sex, and he won't mind any more.

    Stan begins his weekly group therapy "Peace of Mind" sessions Thursday, and Nathaniel and I think we will try to get him to take a cab. I suspect that will make him feel more mobil and independent. It is my impression that he can be just as independent there as he was at American House these last few months. It is also my strong impression that any of the residents who can handle the security systems on all the doors is free to come and go as they please.

    nsb heckles: While Trina came up with a wonderfully high-minded reason to have Stan take a cab, another potentially-relevant fact is that we will *both* be out of town that day -- I will be near San Jose, while she will be in Albuquerque.

    The staff we saw seemed very nice. When we first got there, one of us asked us right off if we were there to see Stan.

    Tomorrow, we will call and make arrangements for his communication services.

    Friday, April 8, 2005, 3:40 PM

    From Trina

    I just visited the two best choices (by all accounts) of institutions in the Ann Arbor Area, and I have made the executive decision for Riverview.

    Bortz (the other choice), is on the far end of Ypsilanti, in a former hospital building. In spite of all the wall paper and other touches, it still looks like a hospital. I think that if Stan's medical condition were much worse, it might be a preferable placement, but that is not the case. There were also only doubles and quadruples available.

    Riverview is was built as a nursing home back in the sixties, and seems less like a hospital. It is just over 1/2 the size of Bortz, and they have a private room available. It is also very conveniently located for us (near the intersection of Main and 14).

    I believe he will be in room 217. He will be provided a bed table/dresser, a wardrobe/dresser, an armchair, and a bed. There is plenty of space for a couple of bookcases, and a desk for his computer. Hookups are supplied for Cable and Phone, although the associated costs are his responsibility. Medicaid, etc., will allow him $60/month for this kind of stuff. He will share a half bath with four other people, and will be supervised twice a week for a bath or shower in the shower room. The bathtub is a state-of-the-art walk-in whirlpool. He is going to LOVE that. I met few people, but observed many, and they were all respectful and professional. The intake guy (Ben McDonald 761-3800) says that much of the nursing and aid staff have been there for many years (unusual in this line of work), which I take to mean that the employees are well treated and paid.

    Deb Stoll (sp?), the hospital discharge worker, confirms my impressions, and wants to do this today. I told her that Nathaniel -- the power of attorney guy -- won't be here until tomorrow night, and that Monday would work much better for us. That would also give us time to move his essentials into his room before he gets there, etc. Deb is contacting Ben, and hoping he will take Stan on the promise that Nathaniel will be in on Monday. This does not make me happy, but the hospital is in a bit of a bind. They are having trouble coming up with ANY medical reason to keep him. Although they won't dump him on the street, they also won't get paid for keeping him beyond today or tomorrow.

    At Riverview, Stan will be fed three times/day, have all his prescriptions filled and fed to him, have his laundry done, and of course, have his room cleaned. They will give him physical, occupational, and speech therapy as much as he wants, until it is determined that it will do him no further good. He will not be able to leave the building unescorted, however, he is free to come and go with us as much as he wants. There are many activities and outings provided nearly every day. They will be delighted to receive his suggestions.

    The Medicaid application will be part of the admission process, and all we have to do is provide the necessary statements from the bank, Social Security, etc. Riverview will send in the Medicaid application when the Medicare/Aetna run out, and Medicaid will reimburse them retroactively to the time the other benefits ended.

    The address is 355 Huron View Blvd., Ann Arbor, MI 48103, (734) 761-3800. He will probably have Room 217. I or course don't have his private phone number yet, but we may be able to transfer his current one to the new place.

    Any questions?

    Thursday, April 7, 2005, 1:30 PM

    From Eliot

    I just got off the phone with both of the nursing homes that Trina asked me to contact. They are:

    Evangelical Home-Saline
    440 West Russell Street
    Saline, Michigan 48176
    Telephone: 734-429-9401 or 734-662-5554
    Facsimile: 734-429-0183

    Riverview of Ann Arbor
    355 Huron View Blvd.
    Ann Arbor, MI
    (734) 761-3800

    Evangelical in Saline has only 28 beds for men out of a total of more than 200 (which made me feel like I had a big expiration date written on my forehead in testosterone). They don't anticipate any beds opening up in the next couple of months, but I had them send Nathaniel & Trina an application so they can get on the waiting list.

    Riverview, on the other hand, was rather simple. The admissions coordinator (Ben) told me that they have beds available right now. They take both Medicare and Medicaid. If Dad is there long-term, we can put him on Medicaid and he'll stay in the same bed he had on Aetna.

    The next step is to take a tour and fill out an application. At this point, it sounds like that's up to Trina, I'm afraid.


    Wednesday, April 6, 2005, 6:40 PM

    From Trina

    The discharge nurse/social worker who was hopeful the pacemaker trick would keep him at American House for a while longer, says he can't go back there. They are keeping him until a physical therapy evaluation can be done. She hopes that SOME valid reason will be found to place him in a step-down (nursing home) for 2-3 weeks to give us time to find something else. Deb Whateverhernameis largely concurs with Cathy Cox's assessment of the nursing home choice. She gave me two qualified recommendations, Riverview in Ann Arbor, and Saline Evangelical. She says to get on this right away, because beds fill fast. I have two different forms for Medicaid, and I will call the Medicaid office to find out which one we need to use.

    I came clean with Stan while I was there, and told him he wasn't going back to American House. We talked about his stuff, what his living arrangements might be like, and the nurses' advice about dropping in. Wheels did seem to be grinding slowly, and he seems to be gaining a sense of what is going on. The duty nurse I talked with (Susan) said UofM is concerned that he's not taking his medications properly. (That would certainly be an explanation as to why he gets stronger in the hospital and weaker upon leaving. Another explanation would be that he knows deep down that he should be better supervised, but doesn't want to admit it.) He seemed comfortable with the language "more supervision". He didn't put up any fight, but asked if he should continue to be "active". I assured him that maintaining a high (!) level of activity was probably more important than many of his medications, and that the new placement would certainly have at least as many oportunities.

    His phone number is 734 936-7425. Bed 1.

    Eliot, could you do your thing with Riverview and Evangelical, and see about finding him a bed? Discharge Planning Nurse/Social Worker Deb says that sometimes Medicaid will give coverage retroactively to pick up the bureaucratic lag time.

    Meanwhile, Stan is fine. -- Trina

    Tuesday, April 5, 2005, 1:40 PM

    From Trina

    I was awakened this morning by a call from Sandy at American House telling me Stan was on his way back to the ER. I then rescheduled his dentist appointment.

    I also talked with the visiting nurse who had seen him yesterday. She had many concerns. Topmost, is that she feels that American House is utterly unsuitable for him. He fell down Sunday night. When she (Cathy Cox, a repeat) got there yesterday am, he had several partial morning packets' pills in a pile, and she managed (with our list and chart) to make up yesterday morning's. However, she is skeptical that he is taking what he should when he should.* She said he seemed extremely confused (with certainly jives with my phone calls with him yesterday -- during which he never told me she had come. Or that he had fallen. She advised me in the strongest terms to refuse to take him home from the ER, and to insist that the hospital do whatever it must to get him into a stepdown (nursing home) instead of sending him home.

    I asked her for recommendations (after explaining the process we have been going through) of nursing homes, and she had none. She did give me one clear piece of advise, though, that I think is a very helpful one: She says there are NO "good" nursing homes. She says that the most important thing is proximity to us. She says our dropping in unexpectedly at random hours of the day and night will insure Stan better care from ANY facility that he would otherwise get at ANY without our constant vigilance.

    Cathy had been left with very little information about the Aranesp (shots). I told her I thought *she* was going to give the injections, and that she could start tomorrow (the meds came today). Do you know if PT is supposed to come 'round? Because Cathy thought they should, and no one seems to know anything.

    ANYHOW, I went to the ER. Stan looks the same as always, except that he hasn't bothered to do up his pants since he got there. He had called me from there to ask me to bring his wallet. When I asked him why he needed it, he said that he might need to take a bus home. Right. He had asked for a Social Worker and a Chaplain. The latter arrived right after I did, very concerned (he was ready to administer last rites, I think). When Stan started to explain his Peace Plan, and how the chaplain could help, I stepped out to look for the social worker. When the chaplain left, he explained to me that there was nothing he could help Stan with, but that Stan would be in his prayers.

    The social worker arrived and dodged the Peace Plan issue very well. I explained to her that I felt VERY STRONGLY that Stan should not go back to American House. I also explained that my opinion aside, this was all being taken care of by committee, and that I had no real decision making powers on my own. She agreed with me, and is going to check Stan's record to see if he's spent more than three consecutive days admitted to the hospital within the last 30.

    Towards the end of this conversation, the ER doctor came in. She concurs. She is transferring Stan to MedPath for observation (not an admittance). If we need her to, she is ready to admit him. The first batch of tests are all normal (his complaint upon calling 911 was chest and arm pain), and the doctor wants to do a second round of blood work after several hours. It is interesting to note, I think, that Stan did not ask (he says) to go to the hospital, American House insisted. My suspicion is that they don't feel up to giving Stan adequate care, no matter what they tell us.

    I am going to go about my day now, and drop by the hospital this evening to see if there have been any changes or new information.


    * Last night, I got a call from Stan confused. He said that the Monday PM packet only had one pill in it. He wondered if he should take a Tuesday one instead. He couldn't find Sunday's packet (to tell if he had taken Monday then instead). He said he had a couple of Tuesdays. Now, Nathaniel had just taken away all but the Sunday packets, and Seth/Donald had delivered only Monday-Thursday packets. I asked him if he had already taken Monday's, missing one pill. He couldn't remember. I decided then that I would call Spectrum today and have them administer his AM and PM pills. I figure Stan can handle his own NOON, because that packet has only four identical pills (carbidopa), and an overage or underage is totally unharmful.

    Tuesday, March 29, 2005, 10:30 PM

    Stan is home from the hospital, happily back in American House. He is *definitely* significantly more energetic than 2 days ago. Having his heart beating at least 60 times/minute seems to agree with him. He was walking around relatively briskly, defiantly independently, and he made a point of holding open the door for *me*. Of course, the prognosis remains the same: nobody will be terribly surprised if he dies tomorrow or if he lives another two years or more in a very slow decline. But everyone involved advises us to start filling out nursing home applications and visiting the homes themselves.

    Meanwhile, Shana -- the only other human in the house, with Trina out of down -- seems to have come down with a bad flu. I'm trying to be as helpful to her as I can despite the demands of Stan and work, but the truth is that... I'm getting sick too, I'm afraid. In any event, I'm really looking forward to having Seth & family visit and help me sort through some of the nursing home issues. I am getting a bit frayed around the edges, and I'm *sure* that more of my hair is white now than just two weeks ago. But if Stan can survive this, so can I.

    Back to the positive side, Stan's urinary tract is functioning much better. In addition to turning on his pacemaker, they changed two medications during this stay -- they reduced his hydralazine, and they added "Flo-Max" to help relax his flow.

    Good night for now...

    Tuesday, March 29, 2005, 1 PM

    Today, we have actual news, for once! Naturally the hospital chose this moment of relatively good news to begin talking with us about nursing homes. After some discussions, it looks like he will be coming home from American House, probably today, but we will begin looking more intensely for another facility. There's one, Willow Creek (in Belleville, about 21 miles from our home) that Discharge Deb recommends very highly. So we've bought a little more time with the pacemaker, but we have to get serious about planning the next stage of his care. I will be calling Willow Creek this afternoon.

    More as I hear it. -- Nathaniel

    Sunday, March 27, 2005, 11 AM

    This morning, Stan says they are talking about putting him in a nursing home, due to the multiple falls and ER trips. He's not enthusiastic, and no decision has been reached yet. My guess is that since it's Sunday, they'll just keep him until the social workers show up in force tomorrow. However, that could be slightly problematic; I have an important meeting that will probably occupy me from about 10 to 2 tomorrow, and Trina has to catch a plane out of Detroit at 2:10, but I'm sure between us we'll manage to talk to the social workers as needed.

    That's really all I know, but you can call him if you like. His number in the hospital this time is (734) 936 7441. More as I hear it.

    Saturday, March 26, 2005, 11 PM

    He's back in the hospital again. Very similar symptoms, probably nothing new, but they're admitting him again at least for the night. More when I hear anything.

    Thursday, March 24, 2005, 7 PM

    So, I just finished spending most of the last two hours updating Stan's medications. For those of you who don't know, he now takes 35 pills daily. He can't possibly keep track of them all, so Trina and I prepare them for him periodically in three envelopes per day -- 22 pills in the AM, 4 at noon, and 9 in the evening. Today I had to take the packets that we had made up before his hospital stays, remove one pill and add three more to the AM packet, and add two more to the PM packet. We had 10 days worth of packets already made up. Usually Trina handles this particular chore, and my appreciation for that effort was renewed this evening.

    Anyway, I had just finished, and was sitting down at my computer to start my day's work, more or less -- yes, it's 7 PM, but today I also had to bring him home from the hospital, read his discharge paperwork, fill his prescriptions, etc. -- when he called and told me, among other things, that since his bowels are now moving so splendidly he really doesn't want to take a laxative regularly. Since I just added a laxative to both the AM and PM packets, I'm NOT amused, and I still haven't decided whether to remove them myself or let him remove them if he really doesn't want them. Either way, I still have to make one more trip over to his place tonight so that he has pills for tomorrow.

    I'm hoping tomorrow will be a bit better; my backlog is piling up at work. Cross your fingers.

    New thought for the day: "Patience is a minor form of despair, disguised as a virtue." -- Ambrose Bierce

    Thursday, March 24, 2005, 5 PM

    Stan is home again. They've reduced one of his medications back to what it was four days ago. And they've instructed him to start using the walker instead of the cane. Otherwise, there is absolutely no news from this stay in the hospital.

    After I dropped him at home, while I was still driving home myself, he called me on my cell phone very excitedly. "I have great news!" he began, excitedly. Then he began telling me how wonderfully his bowels had just moved. It's amazing how much one can find to say about something like that!

    On a more serious note, he really seems to be much weaker than he was just a week or two ago. I talked with Sandi, the top gun at American House. (She's really great -- a deeply caring and empathetic woman.) Sandi assured me that she would call me if she starts to think he needs more care than he can get at American House. I'm guessing it won't be too long now.

    Thursday, March 24, 2005, 1 PM

    I just talked with Stan in the hospital. He is in room 7C-7140, and you can reach him directly at (734) 936 7140. However, you probably needn't bother; it sounds like they're sending him home again in a few hours. I don't think there's anything new, but the physical therapist is encouraging him to start using the walker instead of the cane. We'll see -- he has been very stubborn about that in the past.

    Thought for the day: "A stereotyped but unconscious despair is concealed even under what are called the games and amusements of mankind... But it is a characteristic of wisdom not to do desperate things." -- Henry David Thoreau

    Wednesday, March 23, 2005, 3 PM

    Like a bad penny, Stan is back in the hospital. I figure he was out of it for a little less than five hours.

    This afternoon, Stan felt good enough to go along on the American House outing to Wal-Mart. While in Wal-Mart, he vomited (couldn't have happened in a better place, if you ask me). Then, when they came home and he was walking in from the van/bus, he got dizzy and fell down, at which point 911 was called once again.

    Oh, and when they asked him what hospital he wanted to go to, he told them that he just got out of St. Joseph's, and he usually goes there, but this time he wanted to go to U of M. Of course, he usually goes to U of M, and has only gone to St. Joe's when he has told them, in the ambulance, that he usually goes to St. Joseph's. I really don't understand why he so confused about the hospital names.

    More as I hear anything.

    Wednesday, March 23, 2005, 2 PM

    Stan called me early this morning, telling me that they were discharging him today. I got to the hospital around 9:30, and found him in good spirits, a tad week, and very happy to have his catheter out. But it took us about half an hour to get him out, as they had a fair amount of stuff to go over with me in excruciating detail. The only important things were a few changes to his medications -- he's slightly anemic, so they've put him on an iron supplement and a weekly shot of aranesp. They've also added a new drug, Protonix, which is for indigestion, which he's been complaining of. They also increased his Imdur and decreased his Hydralazine, which they only put him on the week before.

    Nothing has really changed in his prognosis. They did an MRI on his kidney and they say that the lump/mass on his kidney isn't growing.

    When I drove him home, and was helping him out of the car, he accidentally hit the lock button, so I was stranded for almost an hour at his place until Trina was able to come and unlock it for me. As if I wasn't spending enough time on this stuff already.... At any rate, he's home now, 734 477 6883.

    Tuesday, March 22, 2005, 11 AM

    Stan is in University Hospital, Room 7B-7425, and can be reached by the phone in his room at 734 936 7425. He sounds fine on the phone, his only complaint is that he was catheterized, which he rather didn't care for. He says that they are talking about sending him home tomorrow. That's pretty much all I know at this point.

    Monday, March 21, 2005, 10 PM

    The doctor just called. He's basically ok; they're admitting him overnight to Cardiology, to see if there's anything else they can do for him. They think he may be experiencing more discomfort from the heart failure, but he hasn't had a heart attack, and there's not any indication yet that he actually has any new problems.

    I may know more tomorrow; I will write more then.

    Monday, March 21, 2005, 6 PM

    I just got a call from American House; Stan is on his way to UM Hospital again, this time with chest pains. That's all I know at this point; more news will follow when I get it...

    Thursday, March 17, 2005, 7 PM

    I visited Stan at American House today. He's definitely weaker, but not giving up. He's extremely easily winded, but still walking around and more determined than ever, as far as I can tell. So, as in the past, I don't know what to tell you. At this point, I wouldn't be surprised if I'm still sending out these messages at this time next year, but i wouldn't be surprised if he was gone in a few days, either.

    Trina and I have now definitely decided that we will be having Passover in Ann Arbor this year. The seder will be Saturday night, April 23rd, at 5 PM. (Click here if you have any further questions.) Although I would feel like the boy who cried wolf, at this point, if I told you that you should rush to see Stan this weekend, I would nonetheless suggest that this might be a good year to come visit Michigan for Passover if you can.

    Wednesday March 16 2005, 4:15 PM

    Stan is home from the hospital, apparently none the worse for wear. They added another medication, hydralazine, which he's been on a couple times in the past -- it is used for both high blood pressure and heart failure. Nothing else has changed. He is back in his apartment at American House.

    Hospitals suck. He turned out to have been kept in the emergency room all night, waiting for a bed to open up. They finally sent him up to a room just a few minutes before they decided to discharge him. The annoyed nurse was therefore required to ask him all his intake questions and his discharge questions in a single sitting. I'll be interested to see if they charge him for a day in the hospital.

    Wednesday, March 16, 2005, 10:15 AM

    Last night Stan was admitted to the hospital, for a flareup of the congestive heart failure. Earlier in the day I had been concerned because he was having much more trouble walking than the yesterday; his knees were buckling as he tried to walk. I thought it might be a worsening of the Parkinson's, but it turns out to be the CHF.

    We haven't seen him yet, having seen him in earlier in the day and already taken him home again, but we will go and visit today. However, this morning it turns out there's a catch: When we went to bed last night, he was in the ER in the process of being admitted. This morning he is... still in the ER in process of being admitted. Apparently they're out of beds, so he's still in the ER for now. More when I know it.

    Tuesday, March 1, 2005

    Yesterday, I took Stan to visit a social worker, Kathy Supiano, for a one hour appointment. I didn't remember seeing her, but apparently she met with him once, about four years ago. Amazingly, she seems to remember him well. She is both extremely competent and deeply empathetic, a real gem.

    She had an hour long discussion with Stan -- punctuated by my input, mostly just as needed to make sure she got the facts right -- during which she walked him through the issues facing him with amazing clarity and compassion. The result was fascinating: He probably spent a full ten minutes talking about his attitude towards dying, which has got to be some kind of record for him.

    Not that he really said much, of course. It seemed clear to me that she wants him to start recasting his life goals from things like "making peace in the middle east" to "spreading ideas and inspiring people to work for peace in the middle east" -- a clever ploy, of course, because he believes he's already done that. It didn't "work" in the sense that he didn't say he was ready to die happy, but he may actually have had a momentary glimmering of what that might mean.

    She also effortlessly talked him into attending a weekly "Peace of Mind" therapy group for seniors. He surprised me by asking, "is that the Buddhist-like thingie?" Apparently he sometimes does remember what you say to him!

    She also, at least momentarily, scared the heck out of him on the subject of falling down. She has some appalling statistics, the circumlocutions of which I recognized as manipulative, but he certainly didn't. She said that after you hit 80, a major fall (breaking a hip or other major consequence) has a 70% 18-month mortality rate. (I didn't mention it, but breathing probably has a 10% mortality rate at that age. According to an online quiz I just did, he would only have a 3 year life expectancy today even if he *hadn't* had all his problems of the last 5 or 6 years.)

    Anyway, she walked him through a discussion of nursing home options, and got him to say how much he'd prefer to avoid ending up in one, and then she hammered back again with the dangers of falling down. It was very effectively done. I noticed he was holding the cane more determinedly and effectively when we left, though I'll be surprised if it lasts.

    He looks great nowadays -- like he's got another decade in him. I increasingly doubt that I will actually outlive him.

    Friday, February 11, 2005

    Dr. Cramer (the nephrologist) just called with Stan's latest test results. His creatinine is down to 3.5, a tad better. However, his Sodium & Potassium are a tad high. Accordingly, Dr. Cramer has reduced his Lasix to 1 1/2 tabs/day and his potassium to 1 tab/day

    Stan is delighted -- he regards this as clear evidence that he is getting better -- any reduction in medicine is good, right? I don't have the heart to try yet again to explain the delicate balance between his heart and his kidneys that makes us constantly have to readjust these medications. If he wanted to understand and remember this, he would by now.

    Wednesday, February 9, 2005

    Stan is doing wonderfully this week. He has had two medical appointments this week, which is the reason I'm actually getting around to writing an update when he's feeling so well!

    Basically, he has been getting steadily better since he last left the hospital, almost two weeks ago. He is now alert, and walking well and quickly -- there's essentially no sign at all of the deterioration we've been mentioning for the last month or so!

    On Monday, he met with his primary care doctor, Dr. Yeturu, who pronounced him to be doing as well as could be hoped for, given his various ailments. Dr. Yeturu also took him off one medication, hydralazine, which is a blood pressure medication he was given when he had the incident with the defibrillator, at which time he had rather high blood pressure. Since that went away after a few days and didn't come back, he is now back to only his previous blood pressure medication. Most of the discussion with Dr. Yeturu centered around his irregularity, and he came away with a recommendation to get more fiber in his diet. Duh!

    Today (Wednesday), he met with Dr. Cramer, his nephrologist (kidney specialist). Again, he got as close to a clear bill of health as he's likely to get. In particular, his kidney function, which was estimated at 20% five years ago, and was down to 10% last month, is now estimated at around 25%. However, his creatinine levels are higher (3.6) than they have been, so they're going to be watching him closely -- they want another blood test in just two weeks. (I know that the web is no substitute for a doctor's opinion, but when I feed his information into the online kidney function evaluator at I get a calculation that his kidney function is about 17.5%. So I guess your mileage may vary!)

    Also, the possibly-cancerous growth on his kidney is growing, but quite slowly -- approximately 1 cm in nearly a year. They're not too alarmed, given the slow growth, but they're referring him to a urologist for a second opinion.

    Anyway, the bottom line is that, once again, he seems to be in astonishingly good shape, all things considered. He seems a tad worried about the growth on his kidney, but what that tells me is that he was more alert this time than the other times he's been told about it -- I had to remind him that he learned about this almost a year ago, and the only news is that it is very slowly growing.

    We also got the geren light from Dr. Cramer to make regular changes to his Lasix intake based on his weight fluctuations. He's currently weighing in at 184 (almost 20 pounds down from his high this fall), and they want him to stay right there -- if he loses more weight, it might mean he's getting dehydrated and needs less Lasix, while if he gains, he may be retaining water and needs more Lasix.

    And that's the news from Camp Stanley! He's doing well and is very alert and always loves to hear from people -- 734 477 6883.

    January 26, 2005, 11:41 PM

    [From trina]

    I got to the hospital at 6, and found Stan dressed, with his coat on 
    (he said he was cold), lying on the bed just as I described before.  
    When I said, "Let's go," he told me he had indigestion.  I asked what 
    he meant, and he said he had indigestion.  I asked when it had started, 
    and he said he didn't know.  He was still lying diagonally, half 
    on/half off, the bed, with his head about 2/3 of the way towards the 
    top.  I was concerned that if I took him home, he would just call 911 
    again tonight or tomorrow morning.
    So, I found his nurse and told her that he was complaining of 
    indigestion.  She hurried in and asked him to talk to her about his 
    discomfort.  She told him that she had been attending to him all day, 
    and this was the first he'd mentioned it.  She prodded him physically 
    and verbally for five minutes, and was unable to get a coherent answer 
    of any sort from him.  I'm unconvinced that he made eye contact with 
    her, the aide, or me the entire time.  He asked me if he should come 
    home or stay.  I told him I was not one of the medical professionals 
    there.  The nurse tried again to make any sense of what he was saying, 
    and finally asked him if he thought it was safe for him to go home.
    Stan asked what they could do for him if he stayed.  She told him he'd 
    been discharged by the doctors, that they could find nothing wrong with 
    him.  He asked me if wonton soup would help.  I asked him if he was 
    going to panic in a few hours and call 911 again.  He finally 
    reluctantly said he would go home.
    Then, he gave every impression of having a very difficult time getting 
    up.  It took two people to help him.  Now, previously in the day, he 
    had very little trouble.  In fact, the nurses had the bed alarm armed 
    so that he wouldn't get up without their knowledge.
    There are many other oddities, but no need to regale you with them.  So 
    far, I am glad to say, I have received no call that he is on an 
    ambulance.  Talk to you all soon.

    January 26, 2005, 1:38 PM

    [From trina]

    As I was hitting Send, the phone rang.  They are discharging Stan 
    today.  As soon as I can (it'll be a little while), I will go pick him 
    up and take him home.
    You know, I was just there two hours ago.  I wish they'd told me then!!!

    January 26, 2005, 1:36 PM

    [From trina]

    Okay, boys:
    I happened to be visiting Stan when the physical therapist came in and 
    did a basic safety evaluation.  Afterwards, I had a long chat with her 
    about baselines and apparent deterioration.
    She feels independent living is no longer an option.  For the nonce, 
    she sees Spectrum coming in to give him showers to be an absolute 
    minimum of adequate supervision.  She cannot predict the rate of 
    Parkinson-induced dementia (it varies not only with the individual, but 
    with the individual's reaction/tolerance to the carbidopa), but says it 
    will definitely get worse and soon.
    She asked if finances were an issue for him, I said they were.  I told 
    her that the Spectrum services were already being paid by his sons.  
    She asked if he was going to be moving in with any of us, and I said 
    that was not an option.  She strongly suggested you all get together, 
    and figure out what's next.  Spectrum can be more supervisory, but that 
    is, of course, out of pocket.  She says that Medicare will cover 30 
    days in a nursing home for physical therapy/rehab, but that there is 
    very little point.  Parkinson dementia leaves the patient absolutely 
    unable to remember how they're taught to do something safely.  That is 
    why this whole thing with Elizabeth has come up.  (Uh, if I haven't 
    included Elizabeth in Chicago in this whole thread, simply ignore that 
    last statement!)
    The reason Stan sits on the bed in a random place and then just flops 
    over, without regard to where his head or feet are, or where the 
    inclined part of the bed hits him, is the Parkinsons.  NO amount of 
    training will be effective.  The only way he will sidle over to an 
    appropriate place to sit, and then adjust himself so that his head is 
    "on the pillow" is for someone to talk him through it.  Each and every 
    time.  That is simply the nature of the disease.  Now, the bed is a 
    small and inconsequential example (since it has rails and he can't fall 
    off of it), but it illustrates the nature of the problem.
    Medically, Stan could probably be released tomorrow.  The physical 
    therapist wanted to make sure he was being discharged to a situation 
    where he'll be safe enough.  I *think* she thinks American House with 
    Spectrum is acceptable right now, but it won't be for long.

    January 25, 2005, 10:39 PM

    [From trina]

    Stan's phone number is 734 936-6444.  I just got off the phone with his 
    doctor, whose name I didn't catch.
    They decided to keep him because he seemed unusually weak.  This doctor 
    reviewed Stan's medications with me (a nice change!).  They are also 
    concerned about his kidney function, and they want to get a handle on 
    that.  I guess that'll take the place of his appointment tomorrow with 
    the kidney specialist.
    Stan seems calm and content.  He had a very nice sleep in the ER.  The 
    doctor immediately recognized his level of confusion and incompetence, 
    and was anxious to talk to me.  I expressed concerned that his 
    Parkinson dementia may have progressed a leap, and he opined that was a 
    possibility.  Perhaps some sort of evaluation can be made while he's in 
    there.  I'll advocate for that when I go in to see him tomorrow 
    morning, at 9:30 (after my Wednesday class).

    January 25, 2005, 7:25 PM

    [From trina]

    Stan is, as I type, being taken to floor 6C, room 443.  I don't have a 
    phone number yet.  I also don't know what they found, because the 
    Emergency room nurse wouldn't tell me.  I will try the floor nurse once 
    he's settled in, and if I can't find out that way, I will go back in to 
    the hospital.
    I'm not there now, because, frankly, I don't wanna' be. Actually, 
    though, I let Shana and Miriam borrow the only care that is free of the 
    snow plow mound, so I have a tolerable excuse.  If I can't find 
    anything out over the phone, though, I'll dig out a car.
    The information I did get, however, during the several hours I was in 
    the emergency room this afternoon, was that he appeared to be fine.  
    His sphincter is working fine.  He probably slept through soiling 
    himself last night because of the Xanax.  The doctor at UoM did not 
    seem to approve of St.J's giving a geriatric Xanax at all.  He 
    suspected that Stan picked up a bit of a bug, and that between the 
    GoLytly and the antibiotic (not to mention the fiddling with his 
    dosages) have messed up his internal flora.  Makes some sense.  When I 
    was there, they were going to check his fluids for all sorts of stuff, 
    let him rest for several hours to see if the diarhea continued (Stan 
    couldn't even work up a good stool sample since he'd arrived), and then 
    discharge him.
    The doctor was insistent that Stan's living arrangement be revisited.  
    He wants Stan to undergo a reevaluation of his capacities.
    We all know that there is some dementia there -- his inability to 
    properly use his left leg and hand, his leaning, his inability to find 
    the chair seat, etc., all of which are mental, not physical.  From what 
    I read, and from what I learned today from the doctors at Michael Reese 
    in Chicago re: Elizabeth, this is standard for Parkinson patients.  It 
    will get worse.  Parkinson patients suffer increasing dementia as the 
    disease progresses, and are able to do less and less for themselves.  I 
    don't know if Stan's sudden panic/hysteria/anxiety is part of that 
    pattern or not, but if it isn't, perhaps it is due to a realization 
    that he is becoming unmistakably feebler.
    I do appreciate all your kind words, but he is almost as much mine as 
    yours!  Love, Trina

    January 25, 2005 7:02:51 PM

    [From trina]

    ...Stan is setting such a dreadful example for any one who may get old or
    take care of anyone old.  I always liked those "Old Age Is Not For Sissies" 
    posters.  Stan is definitely a sissy...

    January 25, 2005, 10:41 AM

    [From trina]

    I got a call this a.m. from American House.  Stan is having diarhea.  
    Spectrum was cleaning him up.
    Just now, as I was typing this, I got a call from Spectrum.  They are 
    calling 911.  Stan's diarhea is just coming and coming, and they are 
    afraid of dehydration, as well as not being able to stem the flow.  I 
    insisted, however, that they make him go to U of M.  I'll await the 
    call that he is on the way, and then I'll go meet him there.

    January 25, 2005, 1:10 AM

    [From trina]

    I just got back from taking Stan home -- he was not admitted.  Like 
    last time, nothing additional was physically wrong (not counting the 
    possible infection in his lung).
    I pointed out to him that when I chatted with him at 4, he felt fine; 
    and when Tiara saw and chatted with him at 4:30, he felt fine; but by 
    5, he was in an ambulance.  Tiara told me that  before they called the 
    ambulance, he was doubled up in the lobby groaning and groaning.  Stan 
    told me that, too.  I asked him what was wrong, had he suddenly been in 
    pain?  Nope.  He doesn't know what was wrong, but he doesn't think he 
    was in any discomfort at all.  He was just "scared".  After a bit of 
    asking around at American House, and probing Stan's psyche with 
    questions (not, unfortunately, with a cattle prod), I have concluded 
    that his only new problem is extreme, overwhelming anxiety.  Every 
    single symptom he has displayed is easily attributable to anxiety and 
    Apparently, the medical staff at the emergency room agree.  They gave 
    him 2.5 mg of Xanax, and sent him home.  I have his prescription for 10 
    days worth, which I will fill tomorrow, and perhaps this can be 
    addressed at his nephrologist appointment on Wednesday.
    He says he is afraid of dying ... and he promised God, or whoever, that 
    he would solve the middle-East problem.  I told him that very few 
    people WANT to die, but most people have a level of fear that they can 
    live with.  I asked him if he thought the level of fear he was 
    experiencing was reasonable or out of control.  He copped to the 
    latter.  He even told the doctor that what he thought he needed was a 
    psychologist.  I'll call one of his doctor's tomorrow and see if we can 
    set something up.  He has a psychiatrist who sees him a couple times a 
    year, but he always tells her he feels fine.
    When I got there (he'd been there about 3 hours), he was terribly 
    thirsty.  He thought it might be because he'd done so much yelling at 
    people.  By the staff's tender mercies through tightly gritted teeth, I 
    don't doubt it.  I also don't know why they inserted a catheter, but if 
    it had been me at that point, I wouldn't have stopped there.
    I missed the insertion, but I was there for the extraction.  It lasted 
    at least 30 seconds, 5 of which went like this:
    Stan:  Oooooooh, ooooow, aaaaaaaargh.  Shit! Shit! Shit!
    Nurse:  Stanley, I haven't even touched you yet.
    Stan:  Yeah, but I know how much this is going to hurt!
    Stan  was terribly agitated when I got there, but within 10 minutes had 
    calmed down considerably.  This was also true when I visited him in the 
    hospital a few days ago.  I really think he's in some sort of anxiety 
    spiral, and I hope the Xanax stops it.
    Good night, all.  -- Trina

    January 24, 2005, 1:36 PM

    [From trina]

    Stan called several times yesterday, complaining of stomach discomfort. 
    I pointed out to him that there was nothing wrong with his stomach as 
    far as the hospital could tell, so there was very little point in going 
    back there unless he was experiencing something significantly 
    This morning, he soiled himself in bed.  So, he called.  Shana (I was 
    not home) suggested he remove his soiled clothes and clean himself up, 
    and call the staff if he needed any assistance.  He was very pleased 
    with this advice, and did so.  Then, he went to the exercise class.  
    After class, the activities director left the premises and then 
    returned, when she found Stan still sitting in the activities room.  He 
    told her that he'd soiled himself.  She helped him back up into his 
    room, and told him his laundry would get done today, rather than 
    Stan called me, told me about 1/2 of the above, and asked me to call 
    Am. House.  I talked to Tiara (the Activities Director) there, and then 
    Spectrum.  Spectrum (Cathy, manager) is going to help Stan take a 
    shower today.  They will also discuss with him what services he feels 
    he needs from them.  I told them that at least for now, a shower every 
    day or two would be good.  Stan is afraid to take a shower alone.  I am 
    supposed to go by at some point and fill out some paper work, but any 
    time this week will be fine.
    Tiara says that Spectrum has actually been "servicing" him frequently 
    the last couple of weeks.  I did not know this.  It was they who 
    attended him when he threw up.  He made a special call to them at some 
    point to come burp him.  They have helped him a couple times just to 
    get to and from his room.  I did not know this, either.
    Furthermore, Stan complained today that he was exhausted.  He slept 
    through breakfast, he says, for the first time (I DO know that this is 
    not the first time!), and could barely make it through the 1-hr, 
    sitting-in-a-chair exercise class.
    Tiara says that she's concerned because he seems rather listless, and 
    isn't bubbling with ideas and suggestions all the time, which prior to 
    a couple weeks ago, he was.  I was struck in the hospital by the fact 
    that he didn't read or watch TV, but just lay there staring at the 
    static-y TV screen.
    Since the Parkinson has set in (the last two years), he has had good 
    months and bad months.  Months where he was bubbly and 
    "self-sufficient" and months where he was totally infantalized.  I 
    cannot say whether this is a kind of month or not.

    January 20, 2005

    [from Trina]

    I got to the hospital about noon.  After Stan told the nurse he'd 
    submit to an enema, the "Arab doctor" decided that since he was able to 
    pass gas, an enema and intubation wasn't necessary.  So, they brought 
    him a gallon of GoLytly.  That'll teach 'im.
    1/2 Through the bottle (which he did not like, but didn't mind too 
    much), he had a bowel movement, but not enough.  Another cup brought on 
    another bowel movement.  I left during his second cup after that.  They 
    are, of course, waiting until all comes out clear before they tell him 
    he can stop drinking the stuff.
    It is my very strong impression (warning:  this is my IMPRESSION) that 
    no one would have thought of laxatives or enemas if Stan wasn't 
    complaining constantly and vociferously about his gut.  It is my 
    IMPRESSION that he hadn't moved his bowels since he was in the 
    hospital, but that it hadn't been that long.  IN FACT, when I was 
    "burping" him in his apartment, he asked me to look at his stool in the 
    toilet and tell him if there was blood in it.  So, he couldn't have 
    been as blocked up as the staff at St. Joe's was led to believe.
    Interesting tidbit:  St. Joe's has a brochure on every patients table 
    when they arrive about pain management and how to describe your level 
    of discomfort.  You know, the 1-10 emoticons....  Anyway, Stan 
    discovered the pamphlet this morning, and determined that the pain he 
    was moaning about was about a 2.  He instantly felt much better.
    Stan is obviously rather ashamed of his outburst (I guess there was a 
    public one) against Arab doctors.  He was sure to tell everyone that I 
    saw there that he didn't really feel that way, and apologized.  By the 
    way, I didn't meet today's resident, but I think she's actually Indian.
    He feels like he's really been through hell.  His phone number is 734 
    I have had no word on an expected release date.  At this point, I don't 
    even know what that'll depend on.

    January 19, 2005 20:16

    [from Trina]

    I just finally talked to Dr. Walker, Stan's resident.
    They are going to increase his Sinemet to before-hospital levels.
    They are adding the Zetia.  I was mistaken in my previous recollection 
    that this was a heart medication.  It is for cholesterol.
    They are adding the Celexa.
    They are holding off on the Lasix, because his kidneys aren't behaving.
    I can't remember the name of the kidney shots, but it is for anemia and 
    his hemoglobin, etc., is just fine.  Dr. Walker was able to figure out 
    which medication I was talking about from my explanation ... but I've 
    forgotten the name again.
    This evening, Stan is weak and confused.  This is easily attributed to 
    the paucity of Sinement.  Dr. Walker also says that any sort of 
    infection in old people can cause this sort of confusion.  Stan does 
    indeed have an infection in his lungs.  The lack of Celexa is almost 
    certainly responsible for his panic.
    Stan is feeling just fine, according to him, though.  He ate a full 
    dinner this evening.  It is possible that he will be discharged 

    January 19, 2005 1:05

    [from Trina]

     12:30 am - Stan admitted to St. Joseph's, room 2022.  I'll drop by 
     after class tomorrow lunchtime.
     10:30 pm - Blood tests taken, results not yet in.
     9:30  pm - still in emergency, so far nothing to report.
     8:30  pm - Still in Emergency, nothing to report yet.
     7:30 pm  - I call St. Joe's and he's just gotten there.
     7:00 pm  - Stan calls 911, tells paramedics that he feel much better, 
     but wants to be taken to hospital.  His feet kinda' tingle.  EMS 
     recommends UofM, where he doctors are, but he asks to go to St. J. 
     because he was just there.
     6:30 pm  - I leave Stan feeling "fine", and about to take a nap.
     5:30 pm  - I wait around a while longer to make sure the juice and 
     cracker stays put.
     5:10 pm  - Hospital call him back.  I chat with June, who says he 
     should definitely  not miss his followup appointment, and that she 
     will call back again (probably in the morning) after she has had a 
     chance to talk to Dr. Steel.
     5:00 pm  - I show up at Stan's, relieve the American House staff 
     member who is watching him.  Stan want's me to burp him.  He told me 
     the staff member had given him a cracker, and I give him some juice.  
     He tells me that he feels much better now that I'm there.  It turns 
     out he threw up once, about 3 pm or so, as far as I can deduce.  He 
     walks around a bit.  Tells me that he feels fine, except he needs to 
     burp.  Stan asks me every 5 minutes or so if I think he should call 
     the hospital back (I say no).  He tells me to go home.
     4:35 pm -  Stan calls St. Joseph's and demands to talk to his doctor.
     4:30 pm  - I get a call from Stan saying he feels awful, and wants me 
     to come.
     4:20 pm  - I call Stan, who tells me he has been throwing up and feels 
     not so good.  I tell him I'll call him every 30 minutes or so to see 
     how he's doing.  He seems very happy with that.
     4:15 pm  - I get a call from American House that Stan is not feeling 
     well and wants them to call me.

    January 19, 2005 12:06

    [from Trina]

    I visited Stan in the hospital today about 9 am.  The doctor wasn't 
    available (in fact, I am still waiting for him to call me), but I 
    talked with the nurse (Vicky) and looked over his chart.
    He is being given an antibiotic because pneumonia is suspected.
    He is having panic attacks right and left.  He freaked when they shut 
    to door to his room.  Turns out (as I was afraid!) that during his last 
    stay, he was not on any Celexa or Remeron.  This stay, he IS on 
    Remeron, but no Celexa.  I chatted with the nurse about this, and I 
    suspect it will be remedied.
    He creatin and potassium levels are way up.  This is probably due to 
    kidney failure.  The tests that we are waiting for the results of now 
    concern that.  His nurse rechecked all his meds while I was there, and 
    held off on the potassium supplement.  I thought this was a good sign 
    that Vicky is paying attention.
    He is also not on the Zetia there.  Vicky suspects this is another 
    oversight, and will mention it to the doctors, as well.
    Although Vicky says kidney malfunction can cause nausea, I personally 
    suspect it was due to the sudden addition of several of his medication 
    back into his diet.  I don't know for sure what they weren't giving him 
    in the hospital earlier this week, but it appears to be at least two 
    antidepressants (causing his behavior yesterday, no doubt).  Both can 
    cause nausea.  Also, I noted that he is on the cardidopa there, but I 
    didn't check on how much.  When Nathaniel brought him home on Monday, 
    and when I saw him on Tuesday, he was very shaky.  Today, too.  I'm 
    guessing they have him on a much lower dose of the cardidopa than he is 
    accustomed to.  If that is also the case, then suddenly upping the 
    dosage of that 2-4 times could also cause definite nausea.  He has no 
    nausea today, and is complaining because he is being restricted to 
    clear liquids.  At least he likes Jello.
    He complained that there was no book cart there, so there wasn't 
    anything to read.  I told him I'd bring him a paper and some magazines, 
    or books from his apartment, but he refused them.  He outright told me 
    he'd rather complain to the staff about the lack of reading material 
    than actually read anything.

    January 18, 2005

    Stan is home from the hospital and seems to be doing well. I hope so, as I'm on my way out of town, leaving Trina holding the bag.

    January 13, 2005

    Stan did very well for four months after my last entry. However, recently there seem to have been more problems of one kind or another.

    Last night at about 4:45 we got a call from St. Joseph's hospital, where Stan had been taken by the paramedics. Apparently his implanted defibrillator went off *15* times last night -- 10 of them after the paramedics arrived. The shocks were triggered by v-tac (ventricular tachcardia). He's completely stable now, and seems just fine when you talk to him, but he's of course nervous/scared about what it means. Unfortunately, they don't really know what it means yet, however. He was in good enough condition that they would have just admitted him to a regular hospital bed, but those were all full (with 24 people waiting!), while there was an opening on the cardiac care unit. So that's where he is, cardiac care unit, even though he's probably not quite as sick as that makes it sound.

    August 12, 2004

    Three months. It has been three months during which I felt no need to blog here. I would have bet a large sum of money that Stan didn't have 3 more months to live, and now he's gone 3 months without needing any medical care. Yesterday he had a day full of checkups -- well, actually, a day full of sitting around waiting for checkups, which ultimately caused me to embarassingly disappear from a telephone meeting -- and the [new primary care] doctor more or less shook his head in wonder at how well Stan is doing, given all his ailments.

    I place the origins of this turnaround back in March, when he was diagnosed with Parkinson's. Once they had him properly medicated, not only did his new symptoms (shaking, leaning, falling) recede, but his alertness and activity level improved dramatically as well; this in turn seems to have initiated a virtuous cycle of more exercise, better diet, and more alertness. It's as if he's gone back two years, a minor miracle, and further proof that if anyone can live forever, it is Stan.

    I feel almost guilty for how little attention I have paid him these last few months, but he just hasn't needed it, for which I and my employer are both grateful.

    My only recent Stan-related ethical dilemma: I am willing to bet that he has completely forgotten that he has kidney cancer. But it's not what's likely to kill him (see below), and it's not being treated, so am I under any obligation to remind him? I think not, but other opinions are welcome.

    Today's aphorisms are both Israeli, in tribute to the twisted lingering idealism of my father's youth:

    "Those who do not know how to weep with their whole heart don't know how to laugh either." -- Golda Meir

    "Today's troubles make us forget yesterday's." -- Ahad Ha'am

    May 14, 2004

    Stan is stable, and doing better on a day to day basis. Keeping his fluid balance right is crucial, as he is balanced precariously between heaert failure and kidney failure. But as long as that's under control, he has seemed much better for the last week or two.

    However, on top of everything else, he has been diagnosed with kidney cancer. He was first told on May 5, but by that evening, Trina summarized the situation this way via email:

    Stan was totally upbeat this evening. He had me read aloud the two speeches he drew up for tomorrow (both are simply letters to the editor). In the second, he announces that he just heard that on top of his heart condition, bypasses, aneurism, yadayada, he has cancer, and so won't be around much longer. This makes it imperative that every one within the sound of his voice work even harder than before to make his dream of a Disney-style theme park in the West Bank come true in the little time he has left. I told him I thought it was maudlin. I'm such a sentimentalist. He was rather smug, actually.
    Living at American House seems to agree with him. Aside from dragging him to an endless series of doctor appointments, he doesn't dominate our lives *quite* as much as he did in April. (Of course, Trina might disagree -- after all, April was her month out of town, but I'm travelling for big chunks of May.)

    Anyway, back to the cancer: Given that he already has multiple organs that are failing, there's simply no way they can aggressively treat the cancer. But it's a slow enough growing cancer that it might not be the thing that kills him. Essentially, he's at a stage where a diagnosis of untreatable kidney cancer doesn't much change his rather unenviable position atop the mortality tables.

    On the positive side (I think), the doctor said he is not eligible for hospice care, because there's no medical assurance that he has less than 6 months to live. Of course, nobody would be particularly surprised if he died tonight, either.

    I am a bit better rested than in my previous note, but I am still weary, overworked, and overcaffeinated.

    Thought for the day: " You cannot do a kindness too soon, for you never know how soon it will be too late." -- Ralph Waldo Emerson

    April 30, 2004

    A busy 19 days have passed. He's been hospitalized twice more, but is now in assisted living and doing rather better again. Unfortunately, I had to cancel two trips, which is wonderfully guilt-balancing, as it allows me to feel guilty both for spending too much and too little time with him.

    Trina was gone for most of April, so she missed nearly all the fun, but my daughters & their friends helped with the heavy lifting. I suspect that I spent an average of three hours each day in April just dealing with medical stuff for him (taking him to doctors when he was out of the hospital, and trying to find doctors to talk to me when he was in).

    He is feeble and slow, but he hasn't given up. He is supposed to always use a walker, because it would be very easy for him to fall, but he is clearly not persuaded to use it while inside the building he lives in. We all fear that he is one fall away from being bedridden, which would *not* make him more pleasant to deal with.

    He calls me often. Today, for example, he has already called three times, even though he knows (sort of) that I'm coming over after 4. Nowadays his primary reason for calling me is a computer problem, as he continues to dedicate his life to writing the perfect letter to the editor. At 47, an executive at IBM, I am primary tech support for someone whose problems are that his hands shake, his eyes are weakening, and he never really understood how it worked in the first place. Now there's a job I wouldn't mind outsourcing to India!

    My mood is good-humoredly dark. Last night Trina and I went to see a (mediocre) live production of the Threepenny Opera and I found it almost cloyingly optimistic and life-affirming. But at least I was able to have a good laugh when I realized how pathetic that sounded.

    New contact information:

    Stanley Borenstein
    American House
    3470 Carpenter Rd. Apt. #236
    Ypsilanti, MI 48197

    Phone: (734) 477-6883 or PEG-IS-ROUTE

    Email: s r b at g u p p y l a k e .com
    (NOTE that the old DOES NOT WORK. He uses it to sign up for free offers on the net, you wouldn't *believe* how much spam it gets.)

    Thought for the day: "Leap, and the net will appear." -- Julie Cameron

    April 11, 2004

    The last couple of weeks have been a real roller coaster. At Heartland Nursing Home he started doing well enough that they were saying he'd be able to go home to his apartment in a couple of weeks. Then they changed their minds and said his condition on a bad day is such that it's not safe for him to be unattended, even though he still has much better days, so they recommended assisted living. Then he had another incident of cardiac arhythmia that got him back into the hospital. Then he went back to the nursing home again, where he is now.

    The doctors describe him as suffering simultaneous failure of three organs, the heart, kidney, and brain. I find it hard to imagine how he can last much longer, but then the last couple days he was very strong again, and I've heard that people in his condition can last another year or two. Or, of course, he could die tonight. The doctors have no idea.

    If you want to call him, the number has changed -- call (734) 975-2621 and ask for Stan. On a good day, he's pretty much the same as he has been for years.

    Thought for the day: "I think that we may safely trust a good deal more than we do. We may waive just so much care of ourselves as we honestly bestow elsewhere. Nature is as well adapted to our weakness as to our strength." -- Henry David Thoreau

    March 22, 2004

    Four years after his heart surgery and stroke, Stan is still fighting. I've decided to start keeping this daily blog to make it easier for those of you at a distance to keep up to date on the latest.

    As of now, Stan has rallied back again and is at Heartland Nursing Home in Ann Arbor -- (734) 975-2718 if you want to call.

    I visited Stan at Heartland today. He is considerably stronger. I'm guessing he's probably about as strong as he was when he was in Washington. I walked a hundred yards or so with him, inside the nursing home. He looks better, too.

    The next steps are very unclear. All I know so far, really, is that they're scheduling an initial Discharge Planning meeting with us for Thursday, April 1, at 11 AM. But the early word is that he'll need assisted living. I may know more tomorrow.

    On the lighter side, when I first showed up at Heartland on Friday, Stan had two bits of news for me: 1) They'll be treating him for Parkinson's because of his hands shaking, and 2) They gave him the first manual razor he's had in years, in case he wants to try shaving himself.

    Some additional inspirational thoughts for the day:

    "Heroism consists in hanging on one minute longer." -- Norwegian proverb

    "Having done what men could, they suffered as men must." -- Thucydides