Two things

Folks -

A couple things:

First, I'm told that the article about Judi in the Boston Globe will appear tomorrow, Wednesday [sorry to those who scoured today's paper as I did!] Thre is already something on the Globe's web site written by Kay Lazar who wrote the article last year about Judi's struggle with her insurance company. That article can be found in the White Coat Notes column at http://www.boston.com/news/health/blog/2010/01/patients_rights_1.html.

Some of Judi's wonderful colleagues have, with remarkable speed, created the Virtual Memorial web site I had hoped to create. Consequently, I'm urging everyone to go to Judi's new site at http://judi-chamberlin.virtual-memorials.com/ to leave comments, thoughts and memories. I'll keep this blog active for a while, but the central place for everything "Judi" will now be the Virtual Memorials site.

I want once more to thank everyone who has added to the phenomenal outpouring of affection here on the blog. Judi was, and would be moved.

Piece about Judi on NPR's Morning Edition tomorrow

I just got off the phone with Joe Shapiro from NPR who is doing a piece about Judi tomorrow [Tuesday] morning .

I'll update this if I get any more information, but I wanted to get this out immediately. As it stands now, Joe thinks it will air on Morning Edition tomorrow at 6:25 a.m and again at 8:25 a.m.

Marty

Thank you for your heartfelt comments

Dear Friends and Followers,

I can't begin to tell you how much I appreciate all the wonderful comments that have been psoted over the last day or so.

I am keeping the blog up in order for people to continue to share their thoughts and memories of Judi. I also hope to be able to be in touch directly with those of you who I know were close to Judi.

As more than one of you have pointed out, fame and honors were not what motivated Judi to do the work she did, but I know that she would have been gratified to hear what you have to say about her. Thank you.

Marty

Dear followers of Judi’s blog,

With deep sadness we want to let you know that Judi died late last night [Saturday]. After an uncomfortable day – her breathing was unusually labored for much of the day – she finally relaxed for a while. Around 10:00 Marty, who had been sitting with her for some hours, tried to give her some medication and realized that she had passed away.

If you’re reading this you’ve obviously been keeping up with the blog and know the wonderful, sometimes heroic way in which, like much of her life, Judi faced the inevitability of her own death. We know that so many of you loved Judi and will miss her.

In keeping with her wishes and instructions, Judi’s body will be cremated in the next few days and we will decide later what will happen to her ashes.

Judi’s blog will be kept active for the time being so please feel free to post comments that you might like to share with the rest of us “followers.” Also, before she died Judi indicated that she didn’t want people sending flowers, and we want to honor that. If you want to mark Judi’s memory in some tangible way, it was her wish that contributions be made to either:

The National Coalition of Mental Health Consumer/Survivor Organizations
Checks can be made out to
NEC [National Empowerment Center]
Note on the check that it is “for NCMHCSO in honor of Judi Chamberlin. Checks can be mailed to:
National Empowerment Center
599 Canal Street
Lawrence, MA 01840
or
Visiting Nurse and Community Health
Checks can be made out to VNCH. Note on the check that it is for “Hospice in honor of Judi Chamberlin” and can be mailed to:
Visiting Nurse and Community Health
Donations
37 Broadway, 2nd Floor
Arlington, MA 02474
Or on line at: http://thevisitingnurses.com/Charitable_Giving.htm

Julie and Marty

A minor scare

When I first woke up this morning, I came sort of half-awake and my chest felt very cold. I reached for a blanket and wrapped it around my chest, which felt both cold and hollow--a hard to describe feeling, but one I associate with having pneumonia. I think I then fell back to sleep, woke again at eight and put on "The West Wing" (which we watch two episodes of every morning from eight to ten), but then I guess mostly slept through it, as I remember very little. Marty said that at one point he peeked in at me and I was definitely asleep.

I wanted to eat something so I could take my meds, but wasn't particularly hungry, so I had a few crackers with peanut butter. Marty had a doctor's appointment, but said he was going to call to break it because we didn't have PCA coverage (Lauren has been changing Nancie's hours, and he made the appointment based on the old schedule). I really wanted him to keep it, because he's been sick, so he called around and found that Patti was available to come until Nancie could get here, so that worked out well. Later Ann came, and then Judy stopped in for a little while, just for a visit, so it's been nice to have a parade of friendly faces.

In addition, I think the feeling that I had pneumonia was a product of a half-awake state. I'm no weaker than I was yesterday (weakness is a main symptom), nor do I have a fever. I am quite sleepy, but haven't been able to nap. Marty should be home soon, and he said he is bringing me all kinds of goodies from the Jewish deli and grocery store in Brookline, which is right near the hospital. I'm glad I have my appetite back! I've eaten soup and ice cream and cookies, and I'm eager to see what he's bringing me for dinner.

A calm and peaceful weekend

Saturday and Sunday went pretty well. My appetite is coming back and I've been strong enough to go back and forth from the living room to the bathroom (I've continued to sleep in the living room). The main difficulty right now is that Marty has a terrible head cold. He feels awful and is trying to rest as much as possible, and is also making every effort not to pass his cold on to me, which would be disastrous.

Yesterday afternoon we settled in to watch the Patriots play the Ravens, after watching the Jets beat Cincinnati on Saturday (with the Giants out of the picture, we've switched our allegiance to New York's other team). To our complete shock, Baltimore ran completely over the Pats, running back the opening kickoff for a touchdown and never letting down from that point. The final score was Baltimore 33, New England 14, so there will be no more Pats games, and I'm not sure if we will sustain any enthusiasm for the Jets. But it was nice to sit and watch the game together and enjoy each other's company. On Saturday, Marty was gone for most of the day helping Donna, who's having car trouble again and needed groceries, and when he came home he was exhausted. I keep reminding him that after a bad cold or flu the body has no reserves, and when you get tired you just have to stop right away.

Aside from feeling just slightly weaker, I'm feeling all right. My mood is good; once I start functioning on an intellectual level again, I feel like there's a reason to go on existing, but when I feel as awful as I did last week, I really long for the promised coma in which I will feel no pain. I don't see any point in living just to feel pain and suffering--that's where I draw my "quality of life" line, although I know different people will draw theirs at different points. In some religions, I know, pain and suffering have value and meaning in themselves (one of many reasons why I don't have much interest in religion). But now I still see things I can do both in support of hospice/end of life issues, as well as in the psychiatric survivor movement. And to me, work gives meaning to life.

Two very bad days

Wednesday and Thursday were nightmarish, each in its own way. All day on Wednesday I kept having very clear visual hallucinations, and had to keep doing reality checks. For example, Nancie was sitting on the couch, near my recliner, and then I "saw" her get up, walk across the room, and adjust the thermostat. Then I would open my eyes, see her on the couch, and ask her if she had just been at the thermostat, and she said no. Or another time I asked her if she had been covering her eyes with her arms--also no. I "saw" Marty standing next to me while he was in the next room--simple stuff like that. The hallucinations themselves weren't scary, but the fact that I kept having them was. It was probably a little too much morphine--I am very sensitive to painkillers (and mind-altering drugs in general). For example. Valium, which makes most people pleasantly drowsy, makes me cry uncontrollably. This is called a paradoxical effect, and I have frequently needed to persuade doctors to prescribe a different drug when they wanted to use Valium (for minor surgical procedures, for example). I also react very badly to Novocaine, and until I found a dentist who used gas preferred getting my fillings done without any anesthesia rather than go another round with Novocaine (which makes me go totally bananas--to use the technical term).

I called Lauren several times--she is so calming and helpful, even over the phone, and she told me not to take any more morphine, use some of the ABHR gel, and call her back in an hour or two. She consulted with the hospice doctor, who prescribed a small dose of Haldol, but that is a drug I don't want to take (although she explained that they prescribe it as a small fraction of what is used for psychosis). But the hallucinations lasted only that day. I've had visual hallucinations before, always related to prescribed drugs (except once when I was in a half-awake state, which my wonderful therapist assured me is a time when the brain is in an abnormal state). Probably the strangest hallucination I ever had was about thirty years ago when I was in the hospital after severely straining my back, and was in traction and on painkillers, so was completely immobilized and totally dependent on nurses. I particularly liked one particular (male) nurse, so it wasn't surprising when I "saw" him walk into the room and stand by the side of my bed, but then it got a little strange when he stood up on the bed, straddling me by putting one foot on each side of the bed frame, and than began pulling tiles off the ceiling! At that point, I finally realized that it wasn't happening!

Thursday the problem was totally different. I didn't take any morphine and the hallucinations stopped by themselves. But when I got up to go to the bathroom in the morning (having slept in the recliner), I sat on the toilet for about ten minutes, gasping and wondering how I was ever going back to the living room, and eventually deciding that I'd go to bed instead, since that's only a few steps. Even then, I was gasping and couldn't catch my breath, and just felt horrible in every way. I called Lauren, semi-hysterical, saying "hospice promises that you will not suffer, and I am suffering." Again, her wonderful, calming reassurance overcame my hysteria, and she instructed me on a schedule of taking various drugs and calling her to report on how I was feeling.

At some point, and we don't know when it happened, Marty discovered that my oxygen hose was disconnected! Obviously, without supplemental oxygen, I'm going to feel really badly, but even after he reconnected the tubing, and I did restorative breathing ("in through the nose, out through the mouth," as slowly as possible). Nancie is particularly good at giving me verbal cues when I start gasping. Having her here two hours Monday through Friday has worked out really well, as she is both excellent at the technical aspects of the job, like bathing me, but we have also developed a real rapport, so I just enjoy her company. She, like Lauren, is very good at calming me down. She also really enjoys my cats, and of course it makes me feel good when anyone loves my wonderful Oliver and Gilbert.

I didn't eat at all on Wednesday or Thursday. I stayed in bed all day on Thursday, feeling far too weak to make it back to the living room. I was thirsty (my drink of choice these days is ginger ale), but not at all hungry, and I was so exhausted that I fell asleep early in the evening. Marty asked me if he should wake me for "Jeopardy!" (which comes on at 7:30), and I told him to try. I was actually able to stay awake for the half hour (and even answer the questions coherently), but shortly after that I fell asleep for the night and slept until well after six--about ten hours of sleep! I woke up several times during the night--I had severe post-nasal drip and kept waking up to cough), and I was lying on my hip, which started to hurt. I hadn't taken Celebrex (or any of my meds) and decided that I would eat some crackers in the morning so I could take a dose (which needs to be taken with food). About noon, Nancie heated up some canned macaroni and bean soup, and during the afternoon Ann made some vegetable and barley soup from a package, and I ate quite a bit of that, which tasted so good. These days, soup seems to be my basic food.

In addition, Marty has come down with a really bad head cold, so he feels awful, plus he's concerned that he avoid contact with me as much as possible. He slept on the daybed in the office on Thursday night to protect me, and he's been using hand sanitizer any time he needs to touch something that I will touch. So far, so good, but it's really hard to see him so sick and still needing to take care of me.

Fortunately, when I woke up on Friday, I could feel right away that I was doing much better. I was able to get up and go to the bathroom and back without assistance, and once I did my monitoring (the machine goes on at 10:30), I was able to go back in the living room, where I am always much more comfortable. Lying in bed to sleep is fine, but sitting up is never really comfortable--I start out in a sitting position, propped up with pillows against my bedrest, but I am constantly sliding down and needing to be pulled up, whereas in the chair I am cradled in a comfortable position that supports my whole body.

After sleeping for ten hours the night before, I wasn't expecting to get much sleep last night, but I did get a few hours, and I feel well rested and very hungry. I'm hoping Marty gets up soon, but I want him to get all the sleep he needs--he was so exhausted last night, but I'm hoping sleep will be restorative.

Last weekend, there was a minor "tragedy" when I discovered my Itty Bitty Booklight was broken in a way that was not fixable, so I went onto the Web and searched for a replacement. The original (the "Itty Bitty" is actually a trademark) was surprisingly expensive, but I found a substitute which was only $15 including shipping, and it arrived yesterday. It's a beautiful bright purple, and much sturdier than the old one, which I got years ago as the "free gift" for joining a book club (if it's a gift, by definition it's free), so I certainly got my money's worth.

A scary moment

I decided to sleep in the recliner again last night. I was very drowsy and had been drifting in and out of sleep for an hour or two, so around ten Marty set me up with the stuff I need and shut out the lights, and said that he would be going to bed soon himself. I was drifting off comfortably when suddenly I heard a crash. I had no idea what it was, but I was scared and kept calling out Marty's name, getting even more scared when he didn't answer. I wasn't sure what to do, but I finally got up out of the sleeping bag and got my walker. He wasn't in the office, so I headed toward the bedroom, where I found him half asleep sitting up in bed, not sure of what had fallen. I was just relieved that he was okay, but it took a long while for me catch my breath, which was extremely unpleasant.

After that, it took several hours for me to calm down enough to get to sleep, although I finally was able to sleep soundly. Today has been a day when I've had lot of trouble breathing, so I have been drifting off quite easily all day, and I hope I will slip into an easy sleep tonight. I've talked with Lauren several times, who directed me to take various medications on a schedule, and report back to her. I continue to be quite short of breath--I guess it will be important to see how I feel in the morning.

I'm back to feeling that there's not much use to living like this. Maybe tomorrow I can try to put together something for the New York Times, to show myself, once again, that my brain still works.

The importance of sleep

Marty and I had a nice New Year's Eve--we drank some champagne, wore (briefly) some funny paper hats, and watched some old movies on TV (before switching shortly before midnight to the Times Square ball drop). So we were late getting ready for bed, and, as often happens, when I start too late I have trouble sleeping. My usual sleeping position is on my side, but rolled beyond my hip (a very comfortable position I was taught at a pain clinic when I was having severe hip pain and couldn't lie on it). As my breathing has become worse, it's been suggested many times that I sleep on my back with my head elevated, but I've never been able to sleep on my back, so I've found a compromise position, on my side, but with my head and shoulder elevated with pillows draped on my bed backrest. But that night I discovered I really needed to be on my back, so I tried to sleep that way but kept slipping down, and I decided that if I was going to sleep on my back I would need to do it on my recliner.

I tried that for the first time the next night, and although I was pretty comfortable, I couldn't get over the hump and into deep sleep, until about four A.M. But the next two nights have worked fine--I slept soundly and quite comfortably, although last night I found myself trying to turn over onto my side, which made the recliner move, waking me up! So I think I may try sleeping in bed again tonight. Both Marty and I feel like we're very far apart, although I can always call him if I need him.

Sleep is so necessary...as I become weaker, I find myself drifting off to sleep often during the day. Sometimes it's a funny kind of half-sleep where I'm aware of things going on around me but can't respond; other times it's really deep (like times when I don't hear the phone ring). It's so important for me to sleep as much as I can, as I need as much energy as possible. I think that sometimes when I'm having trouble with incontinence (as I did much of this weekend) or loss of appetite, it's because I'm in a half awake state without realizing it.

This morning I went back to bed after a bathroom trip (the bedroom is a lot closer to the bathroom than the living room is); but I needed to sit in the bathroom for maybe ten minutes before catching my breath and getting up even the energy to make that very small move. I stayed in bed for a few hours and took a little nap, but in the afternoon I moved back to the living room, where I am definitely more comfortable. Such is the minutiae which makes up my day!

The importance of sleep

Promoting wider dialogue on death and dying

There's been an interesting discussion on the "Comments" section of this blog under the heading "Responding to Comments by Anonymous" (December 24), which I would very much like to expand, not just to additional readers of this blog, but also beyond it. I'm thinking of several possibilities, including setting up a new blog, in which several of us would take the lead role, or finding another blog on this topic to which we could become contributors.

There's a very interesting set of letters in today's New York Times on this issue; I did note that, of the seven letters only one is not by a medical professional (it's by the parent of an infant who died--the parent had to switch hospitals in order to get wanted hospice care for a dying, suffering infant); none is by a hospice patient. This, of course, has always been my frustration in my work in the psychiatric survivor movement--that others have always assumed the right to speak "for" us. For hospice patients, the reasons are somewhat different, but the fact remains that the voice of the hospice patient is not being heard. I think I'm in an excellent position to be such a voice (although I hope not the only one), for several reasons: I came into hospice rather early in the dying process; the course of my illness continues to be atypical, leading to my prolonged longevity in the program; and my past career is as an educator/advocate.

Another of the Times letters is by the wonderful doctor, Lochlan Forrow, who is the palliative care specialist at Beth Israel Deaconess Medical Center in Boston (among his many roles), who is the doctor I met with in October, 2008 when I first asked to talk to someone in palliative care. His main point, that a doctor quoted in the original article, commits an unethical act when he promises people that they will not die if they come to his hospital, both because no one can prevent all deaths, of course, but also, and more importantly, because such a statement totally closes off any possible discussions of options and choices for severely ill people.

I'm planning to submit an op-ed article to the Times, first making the point that the hospice patient voice needs to be part of the discussion, and then raising the issues we have been discussing here, but I think the Times may well not want to publish much more on this question for now. So I'm asking all of you to think about the best way to proceed from here. I definitely want to continue this blog, focusing mainly on my own condition and experiences, but I do think there is a place for this wider discussion to take place.

Regaining strength

It's been good to realize that I'm a little bit stronger than yesterday, that I haven't permanently lost some capabilities. Most importantly, I didn't need Marty's help today getting up from the toilet, which is a great relief as it is hard for him to do. I'm still going to pursue getting a toilet surround, since undoubtedly I will need that support at some point.

Today has been a pretty good one, which I've spent mainly in the living room. Marty's plan was to take Donna home today, with Ann scheduled to stay until two-thirty, when Nancy was due, so it presented a problem when Nancy called shortly before her scheduled arrival to say she needed to take her daughter to the doctor. I called Marty, who was at Donna's house, and then called Judy, who fortunately was able to come for the afternoon.

She told me she would need to be gone for about forty-five minutes to pick up her daughter from somewhere and deliver her somewhere else, and I felt confident about staying alone for that period of time, and with the computer and the newspapers it went by pretty fast. Marty kept me posted on his progress--first he and Donna needed to get something to eat, and then get her some groceries, before he headed home.

Tomorrow is New Year's Eve--I asked Marty to buy some of the curly streamers that you throw and they uncurl (I just Googled them and discovered that they are called "serpentines"), and I'm sure we have another bottle of champagne--I'm just glad that I feel so much better than I did over the weekend, when I wouldn't have been in the mood to celebrate anything.

I suppose I should be celebrating getting through 2009, although I'm not so sure that's anything to celebrate. I guess it's good to look back on the good things that have happened this year, especially my Celebration of Life, and all the love and support I have been getting from so many people all over the world. Just yesterday I got a phone call from someone who said I probably didn't remember her, but she had met me some years ago and she wanted me to know what a positive influence I'd had on her life, as well as an e-mail from someone I met in Vancouver about ten years ago with a copy of an interview she'd done with me then and has just published in a consumer/survivor magazine (http:/wcmhn.org/bulletin_files/Bulletin-Winter-09a.pdf). It's things like this that continue to remind me of the good my work has done, and that I'm still able to do useful things even as I can no longer physically manage to do very much at all.

I have no idea what 2010 will bring--of course, no one does, but living with the daily knowledge of my own mortality makes me even more aware of the little things (like the yummy dish of spaghetti with garlicy olive oil and parmesan cheese that Marty just brought me).

Navigating the Medicare drug benefit

For months, I've had the December 31st sign-up deadline for the Medicare drug benefit (Part D) hanging over my head. It has deliberately been designed to be complicated; the logical way to do it would have been to make it a Medicare program, but in the Bush era this was considered to be the dreaded "socialized medicine," so it had to be written to the benefit of insurance companies, each of which created its own rules of which drugs to cover, how much to charge for premiums, and numerous other variables. The law also prevented the government from negotiating lower drug costs, which of course was a windfall to the drug companies. Because the process is so complicated, I just couldn't deal with it, and so I just let the time slip by until it became something I couldn't avoid. And if I, a reasonably intelligent, educated, and aware person, finds all this hard to navigate, I would imagine there are many others who find it totally overwhelming.

Fortunately, Nancy, the hospice social worker, referred me to a local non-profit agency that does nothing but Part D counseling. Their representative called me this morning, took my information, did the comparisons, and found the plan that she is sure offers the best combination of premiums and co-pays to meet my needs. My situation is relatively simple, because hospice pays for all my drugs except Celebrex; for people who need coverage for multiple drugs face far more complexity, as different programs cover different drugs (and, of course, no one can predict what drugs they may need in the coming year). Obviously, all this could have been avoided by making it a single payer program, like the original Medicare program, but the Bush administration was far more interested in funneling money to drug and insurance companies than to helping elders with what became an ever-growing expense. The Republican congress that passed the benefit did not provide any funding, which vastly increased the size of the deficit (and making hollow Republican opposition to the current health care reform legislation, which does provide payment mechanisms). In order to hold down costs, which could have been done by negotiating drug prices or placing limits on insurer profits (ideologically unacceptable), Congress created the hated "doughnut hole"; a process by which the individual, after accruing a set amount of benefits, has to pay full price until another threshhold is reached, at which point the benefit kicks in again.

After a few phone calls back and forth I was given a phone number and was able to enroll over the phone. So something that has been nagging at me for months is now taken care of. It just shouldn't be this hard!

Was it hell...or just the flu?

Saturday, Sunday, and Monday were three of the most horrendous days I've had in quite a long time. Maybe it's fortunate that I don't remember a whole lot of it. In fact, I lost a whole day--when I woke up yesterday morning, thinking it was Sunday, I asked Marty if it was "Will time"...our Sunday morning ritual of listening to Will Shortz, the puzzle master, on NPR, and he said "wrong day." "Isn't it Sunday?" I asked, and was amazed to find out that it was Monday!

I spent three days aching all over, feeling miserable and totally irrational. Marty says that when I get into one of these states I yell at him, which makes me feel bad, except that he doesn't seem to take it personally and understands that it's one of the ways feeling really awful makes me behave. Several phone conversations with Lauren were quite helpful for both of us, but at one point it was two A.M. and I kept insisting that he had to call Lauren, even though he knew she was just going to repeat what she'd already told him and which I was resisting (I think it was to take morphine and maybe some other drug); it's a tribute to Lauren's dedication that even in the middle of the night she was quite able to deal with the situation and tell me what to do (which was, of course, what Marty was already telling me).

Lauren's theory that I had the flu seems to be a good explanation of my symptoms. I didn't take my temperature, but I felt feverish, and the all over achiness is definitely flu-like. Although I've had an annual flu shot every year since the early '80's, I've come down with the flu a few times (the shot doesn't protect against every strain), and it is always hard for me to believe in the middle of it that it is a "minor" illness. I remember once, also in the '80's, thinking "the doctor says I have the flu, but he's wrong, because obviously I'm dying." Another time, back in the mid-70's, when I was living in a communal house in Vancouver, a 24 hour flu swept through the house, taking us one at a time. I was the last, and I remember lying on the bathroom floor, thinking there was no point in dragging myself out of there because I was just going to need to go back and throw up some more!

For the past three days I stopped eating completely, after finally getting my appetite back and having several dinners of turkey, stuffing, gravy, and veggies (from the prepared food counter at the supermarket), followed by a lovely Christmas Day dinner of roast leg of lamb. So until today, when I had some delicious mushroom and barley soup that Marty made at my request, I hadn't eaten at all since Friday. I had a constant craving for ginger ale, so I wasn't getting dehydrated, and Lauren always reminds me that I don't need to eat unless I feel hungry. I'm actually looking forward to having some more soup in a little while, but I have no interest in any other food right now.

In my semi-delirious state these past three days, I kept wondering if this was the beginning of the end, and found myself craving the peaceful state that could then slide easily into a coma, but it didn't happen. I just don't understand why I have to suffer so much, but at least I'm not in constant pain, which would be far worse. I have been getting awful headaches on an almost daily basis--the last one was last night in the middle of the night when I had to wake Marty because I needed ginger ale and tylenol. I felt bad about waking him, but he is just so good about it, and with a dose of morphine as well the headache was entirely gone in about half an hour. It is so frustrating that something as simple as getting a can of ginger ale out of the refrigerator is beyond my capabilities!

We did manage to have a nice Christmas day. Donna is still here (Marty will be taking her home tomorrow--the combination of last week's snowstorm and getting enough coverage for him to be able to be away for four hours or so has kept her here far longer than she had planned). Christmas is a big deal for Donna, so she was making all kinds of goodies which I was able to enjoy (this was before I got so sick), and we managed to be rather festive. Marty came home with the world's smallest Christmas tree (a tiny potted evergreen complete with lights), and we toasted one another with champagne. And on Christmas eve we did the "traditional Jewish Christmas"--at least the Chinese food part (we skipped the movie).

Although I feel so much better today, I seem to have become even weaker. This morning I got out of bed for the first time in three days, went to the bathroom, and discovered I needed Marty's assistance to rise from the toilet. Until now I've been able to use the edge of the sink to push myself up on one side, but now I need something on the other side as well. Tomorrow I will ask Lauren if hospice can supply a toilet surround, which is positioned around the toilet and provides something to push against, which will certainly be a lot easier on Marty. Every time I've asked hospice for a piece of medical equipment it's usually arrived the next day, so I'm sure this won't be a problem.

I'm hoping I can get back to my "normal" state, starting with a full night's sleep tonight. When I was feeling so sick, I wasn't reading, wasn't watching TV, I was just lying with my eyes closed, drifting in and out of sleep. I did start reading the paper again yesterday, and doing crossword puzzles, things I still get enjoyment from. And through it all, Marty and I are still able to laugh.

Responding to comments by "Anonymous"

Thank you for your very thoughtful comments. Although I've never been a teacher in a formal way, teaching in various formats has always been a big part of what I do, and it's something I love. Stimulating people to think, and helping them to articulate what they may not have had an opportunity to put into words, is extremely satisfying.

The subject of death and dying is hard to get people to talk about thoughtfully, because it is so emotionally fraught and so easy to manipulate, as was illustrated this summer by the "death panel" debacle. It is extremely difficult to raise questions about end of life care, because no one wants to think about the fact that, at some level, care will have to rationed. There is simply not enough money to provide every possible treatment for every person with every illness (even leaving aside the fact that many of these treatments are futile, cause pain and suffering, and only prolong the dying process). And we do, in fact, have rationing now, rationing by price, which is perhaps the least rational way of determining care.

Hospice is, I think, a way of trying to step outside the mainstream and help people to think about death and dying in a different way. Too many people think that to talk of dying is "giving up," that it means a lack of caring, and that anything less than providing every possible treatment constitutes neglect. High tech medical care can be a great thing, when it enables seriously ill people to regain meaningful life, but it can also be a trap, leaving people to die a lingering death in an intensive care unit. I, personally, can't imagine a worse way to die--in a room where the lights are always on, where there are the constant sounds of machines, where peace and comfort can be hard to find. This doesn't mean I think ICUs are not good things. They can save people's lives, and the people who work in them are dedicated to providing good care. But, like anything else, they can be misused. And, for the person who values a peaceful death over perhaps a few more days of ICU "life," hospice provides a meaningful alternative.

It can be extremely difficult to sort out when expensive and difficult treatments should be used. It can't be decided on just a single factor, like age, because some very old people can still benefit from them, while others, who may be chronologically younger, can't. These decisions need to be individualized, taking into account numerous factors, starting from the patient's own wishes, and including family and significant others, caregivers, and various kinds of experts. Cost, of course, is also a factor; in this country, by default, insurance companies have become the deciders of last resort, because if they won't pay for a treatment, most likely the person won't get it. To say it again, this is probably the least rational way of rationing care.

A hundred years ago, most people in this country probably died at home. Death was a much more common occurrence, and I think people saw it a part of life, far more than we do today. We have made remarkable progress in eliminating deaths from infectious diseases and other preventable causes, so now people die more commonly from chronic diseases of old age. Because more people die in hospitals, we have become insulated from the reality of death. I'm probably unusual in that I witnessed the actual deaths of both my mother and my father. My mother died in a hospital, a death in which she suffered horribly. My father, a hospice patient, died the peaceful death he always said he wanted. "I want to go to sleep and never wake up," he used to say, and in fact, that's exactly what happened. Having seen that reality makes it much easier for me to contemplate my own death.

I think there have been societies which have found ways to integrate the concept of death into the overall model of what makes a good life, and I understand that what follows are hypotheticals which may idealize and simplify to make the point. These two examples may not be accurate historically, but I am using them to try to illustrate a thought, so please bear with me.

What is important is not the particular way in which a society treats the elderly and ill, but whether it is part of a broad consensus, so that people know what to expect in the closing years of their lives. For example, traditional Chinese society venerated the elderly family member, who was seen as a source of wisdom, and was due the utmost respect, even if the individual was unable to contribute to the household. Unlike us, people did not live in nuclear units, but in multi-generational extended families, and caring for the elderly family member (or members) did not fall on a single individual. Therefore, people could expect that they would receive lifetime care, which, I believe, made them less fearful about old age and death. Those who took care of the elderly did so with the knowledge that they would receive the same kind of care when they became old. In China today (as in many other cultures), we are seeing the breakdown of this pattern and the problems of caring for the elderly emerging as a societal challenge.

A diametrically opposed model is traditional Eskimo society. Perhaps this is a myth, but again I am using it to try to make a point. This was a subsistence society, in which food was scarce, so there were few resources available for people who could not contribute economically, by hunting, gathering, or preparing food. If someone became too old or too ill to do so, the community could not sustain them, and the person would be put on an ice floe to drift out to sea and a certain death. In our context, this of course appears heartless and inhumane, and it surely would if it were imposed on someone who had never heard of the concept; to a person for whom it was an expectation, on the other hand, it would not seem shocking. It was not seen as abandonment, but as what people should expect at the end of life, and I believe was done with love and respect.

In our own society, we have not developed a broad social consensus on caring for the elderly and chronically ill. This is the point I was making in my letter to the Boston Globe; nursing homes have developed largely in the absence of such a consensus, as the default option rather than as an expression of social policy. Working in these institutions is not valued; these are low wage jobs with low pay and high turnover. There is minimal training, which can lead to abuse as underpaid and undertrained workers struggle to take care of too many people to whom they have no social ties. Again, this does not mean that there are no good or caring people working in nursing homes; it is a tribute that many nursing home workers do provide kind and loving care in such environments, with little social support or opportunities to have their work recognized and honored.

I would like to see the hospice concept expanded to provide care not just to the dying, but to others who now languish in institutions. I have written a lot in this blog about the connections I see between my long-time work in the psychiatric survivor movement, in which we have always promoted the concepts of empowerment and choice, and what I have experienced in hospice. I see these values carried into practice in hospice, and I believe they can be brought into many other settings. But this can't happen in the absence of forums to develop a broad societal consensus on dealing with difficult questions.

The current status of the health care debate, with terminology like "death panels" and "rationing" used as sloganeering to shut off discussion rather than promote it, gives me little reason to hope that such necessary discussion will happen, and, in its absence, we will continue to see the unfortunate results of policy making by default rather than by purposeful choice.

Feeling calmer

My improved mood has continued over the last few days, and my appetite is slowly coming back. At the same time, I am finding even the simple things I do, like moving between the living room and the bedroom, or going to the bathroom, leave me even more short of breath, and take longer to recover from. I guess moving back and forth between anger and acceptance is all part of the process.

On Monday, we stayed up late watching the Giants play Washington on Monday Night Football (which the Giants totally dominated), which got me into a bad sleeping pattern--actually, a lack of sleep pattern. I know that when I stay up too late I have trouble falling asleep, and I ended up getting only two or three hours sleep not only that night, but the next night as well. Fortunately, I broke the pattern last night, and I feel about ready for sleep now, so I'll get ready for bed as soon as I finish writing this (it's about ten o'clock now).

Today Lauren came for the visit she promised when we talked on the phone on Sunday. It was so great to see her, and we sat and talked for quite awhile, ranging from the changes in my condition over the past months, to deeper concepts like the role of hospice in our death-denying culture. She brought me a present (which I guess is going to each patient in the program)--a lovely soft little blanket embroidered "Warmest Wishes from the Hospice Team 2009.

Marty just suggested to me that I should give some (very last minute) thought to giving little gifts to my PCAs (which he would go out to buy tomorrow), but I really can't think of anything. I don't feel very Christmasy. Marty came home from running errands today with a tiny potted tree complete with tiny lights. Christmas is always a big deal to Donna, and she usually has a tree and stuff, but she's been here since the weekend because there was a big snowstorm a few days ago and Marty's been unable to take her home because her house has a narrow, steep driveway that apparently has not been completely dug out (she lives behind the main house so it's necessary to be able to get the car up the driveway for her to get home). The spot in my living room where I've always set up my tree is now the corner with my recliner, and there's really no other place for the recliner (or the tree) to go, and even if there was space, the practicalities of buying it and setting it up are just too much to think about.

The "traditional Jewish Christmas" is said to be Chinese food and a movie, so we may well end up ordering take out and watching a DVD!

What good nursing can do

When I first became a patient of this hospice program, one of the best things about it was my nurse, Lauren, whose twice weekly scheduled visits were a chance to talk about all kinds of things, way beyond the routine taking of vital signs. Last month, Lauren was out on sick leave and other nurses started coming instead. At first, no one even told me that she was sick, and I wondered why I no longer got to see her. Even when she got back from sick leave, she hasn't been making home visits, and I only occasionally got to talk to her on the phone.

On Sunday morning, I woke up in a really bad mood, feeling very hopeless and alone, partially manifested as generalized physical pain, and put in a call to hospice. On weekends and nights, it's picked up by an answering service, and is relayed to whichever hospice nurse is on call, and I was very pleased that when the phone rang a few minutes later, it was Lauren. I heard real concern in her voice, and she listened to me as I tried to articulate and explain the complicated feelings I was experiencing. I have been in so much physical and emotional pain, as I get weaker and weaker, but somehow my body just hangs on. Lauren explained to me that many people with my disease, by the time they reach the degree of diminished lung function that I have, the rest of their bodies are so deteriorated that they slip into a coma, and they don't suffer, but because my heart is so strong this hasn't happened to me. This follows my pattern of being atypical over so many years, so it's not surprising that it is continuing.

Lauren's own way to conceptualize this, with references to god, who determines when people die, doesn't work for me, and she acknowledges that it doesn't, just as I accept that it does for her. I don't know why I'm still alive--but here I am. Lauren is one of the few people in hospice who seems willing to hear my pain without responding with platitudes, which I don't find at all helpful (Marie, the chaplain, is another person who is open to these complexities). Our conversation came to no conclusions, but just gave me the opportunity to express my pain and confusion, knowing that Lauren could accept my feelings as real and valid.

Marty, of course, has been trying to help me so much, but when I talk about wanting to die, and death being better than this sort of half-aliveness, that's so hard for him to hear. We both wish that we had met much sooner when we could have had so many more good times, and that there's a deep irony in finding the person each of us wants to spend the rest of our life with, when the rest of my life is so finite. That's not usually what is meant--saying "I want to spend the rest of my life with you" usually means an unknown (but long) time!

Another thing I told Lauren was that I'd barely been eating, and she said that I shouldn't let anyone tell me that I should eat, but only eat when I felt hungry, which I told her was what I had been doing. The whole conversation somehow reassured me, and made a dramatic shift in my mood. I felt bad that I had waked Marty up at about seven because I was feeling so miserable, but after talking to Lauren I was much calmer, and was able to tell Marty how much I appreciated all his care and concern, even when I was saying to him--as I had over the past few days--that he should just leave me alone, and was pushing him away when of course that wasn't what I wanted at all. He is so amazing thoughtful and sweet. Just one example--when he and Donna were cleaning up on Friday night after the Hannukah party, he came out with two boxes and told us that he had gifts for us but was sorry that he hadn't gotten to wrap them. Mine was in a Junior's cheesecake box, and I said glibly that I was sure it wasn't a Junior's cheesecake, but in fact that's exactly what it was. He had gotten me one a few months ago (maybe for my birthday, but I can't exactly remember); to us New Yorkers, Junior's is the holy grail of cheesecake (www.juniorscheesecake.com)! Donna's present was a continuation of his tradition with her of an unusual ornament for her Christmas tree, in this case a lovely little penguin from a museum shop. So in the midst of his feeling so overwhelmed he was thinking of making each of us happy. His friendship with Donna is longstanding and one that I'm glad he has.

I have actually been eating a bit more the last few days--still not normal meals, but more than I have been eating, and I've been able to eat some cheesecake, although it's so rich that I want only tiny slices. Even when I feel hungry, I've been thinking carefully about what I want to eat, as I don't want to get back into having stomach aches and nausea. Marty asked me yesterday if I wanted a reheated latke, but I told him my stomach wasn't ready yet. But I may want one or two for dinner tonight (I asked him yesterday to save some).

I had told Lauren how much I missed seeing her, and she said that she was hoping to stop in, just to say hello, some time before Christmas, which will be great. To me, Lauren epitomizes what a hospice nurse should be--one who accepts the fact that each of her patients, at some unknown point in the reasonably near future, is going to die, and who interacts with each of her patients with that shared knowledge. Honesty is so important--and in our death-denying society, hospice is one of the few places where people should be able to talk about death, yet even in hospice I find some of the nurses use platitudes like "you'll feel better tomorrow," which I don't find helpful at all.

I'm really not scared of dying--what scares me is lingering for an extended time in this state where the simplest things become so complicated and so exhausting. My mind still works for "big" things, like the letter to the Globe, but for "little" things, like keeping track of bills and other paperwork, it doesn't work at all, and Marty is trying so hard to straighten it out. I keep losing and misplacing things, which makes me feel so frustrated and so helpless.

But at least I now feel less agitated and less desperate, and Marty says he sees the dramatic shift since my talk with Lauren. Objectively, nothing has changed, but since I feel so different, clearly something has.

Celebrating Hannukah

I was mixed up when I thought that our Hannukah party was going to be last night, but in fact it was tonight. Yesterday, when I still thought we were having the party then, it was getting later and later and no one was showing up, so I eventually realized I had gotten the day wrong. Marty and Donna spent a few hours yesterday making a practice bunch of latkes, since Marty had always used his mother's method of using a blender, but he had to adapt that to use my Cuisinart instead.

I've been very weak today and didn't want to get out of bed. I did go to the bathroom mid-morning, and needed Ann to help me get back to bed, so getting into the living room seemed too daunting a task. In addition to feeling weak, I also felt incredibly blue today, qualitatively different from the sadness I've been feeling all week.

Marty kept trying to persuade me to get out of bed, but I just wanted to be left alone, and read or dozed most of the day. But after the company arrived, I decided I did want to join in, and Marty helped me to get into my chair, from which I could hear and participate in the conversation, and now I do feel a big improvement in my mood. I still didn't feel up to eating latkes, but I did have some challah and some applesauce, and even though I'm still feeling that my stomach is delicate, the trend is definitely upward.

One positive thing that has happened is that I got a call from the Boston Globe yesterday that they were going to publish a letter I had sent them probably two weeks ago, and it was in today's paper. The topic was a tragic case--two elderly women (one was 98, and the other 100) shared a room in a nursing home, had some sort of disagreement, and one killed the other by putting a plastic bag over her head. It got me to thinking about how awful it is to share a room with a stranger (which happens not just in nursing homes, but also in halfway houses, community residences, and the like). To read the letter, go to www.boston.com, scroll down to "Editorials and Opinion," and click on "Letters to the Editor."

A few very strange days

I haven't written for a few days, and now that I am feeling somewhat back to baseline I'm going to see if I can describe what's been happening. For the last few days, until this morning, I have eaten hardly anything. I think it was on Monday that I accidentally took too much morphine and got into a really weirded out place, so I've been scared of taking any morphine since, until this morning, and I am very carefully monitoring my intake (with Marty's invaluable help). To make matters worse, I ran out of Celebrex, my arthritis drug, a situation that I knew for weeks was going to happen, but was unable to do anything about it because it just felt so overwhelming, and I was also unable to ask for help, which I finally did on (I think) Tuesday. Marty and Donna have done a lot of work figuring out what I need to do as I am now on Medicare and have to set up a Part D account to order more Celebrex (all of my other drugs are supplied by hospice). Before the morphine made me feel so bad, it first put me into a lovely, dreamlike state, and I had spent several hours just drifting pleasantly.

Of course, without Celebrex (or morphine) I started to ache all over, which contributed to my sense of everything being terrible. Not eating, hurting, and feeling overwhelmed all acted synergistically, putting me into a downward spiral. Now, with the morphine I took this morning, I'm not hurting, and having eaten, I have managed to escape the downward spiral. I have some nice things to look forward to, which also helps. Marty and I have been lighting Hannukah candles, and tonight he's invited some people over and will make latkes (from his mother's recipe). On Monday night, we sat on the couch in the light of four burning menorahs and had a lovely time talking and just enjoying each other's company, which we both agreed we just don't do enough of. Usually people have their Hannukah parties on the first night, but things have worked out so we are celebrating the last night instead.

When I start having trouble eating, I have to think very carefully about what I want to eat which will not upset my stomach. The other day I thought I could eat a pear, but it made me feel awful, which made me even more nervous about eating. This morning, I told Marty I thought I could eat some soup, and to my delighted surprise he had stopped at the kosher deli in Brookline and gotten their wonderful mushroom barley soup. I asked him to put it in a little custard cup as too much food can seem daunting, and I ate it really slowly, enjoying the delicious flavor. About two hours later I had another small portion, and a bit later a piece of whole wheat toast with just a little bit of peanut butter, which is also sitting well. I'm not sure if my stomach is ready for latkes, but I will definitely eat some of the accompanying apple sauce.

When I start feeling as bad as I have the past few days, and not eating (not going on strike against food, but just not being hungry), I start wondering if death is approaching. It doesn't scare me--what scares me is lingering indefinitely in this miserable state, too weak to do much of anything, but still, unfortunately, very much alive.

A little stronger, a little less tired

I've spent a quiet day in my chair, after a mostly sleepless night. I'm coughing less, so my stomach hurts less, and I think I'm basically gaining back a little energy, although it's hard to see improvement when any little exertion just knocks me out, and I have to catch my breath before I can do anything else. I need to remind myself that I have to sit down right away as soon as I start feeling tired, as I have absolutely no energy reserves. But if I remember to pace myself and break things down into tiny steps I can keep myself from getting into a panicky state of not being able to catch my breath, which is really terrifying.

I watched the Patriots game this afternoon and Marty and I will watch the Giants play Philadelphia tonight. I'm planning to snack on popcorn, which I've been eating a lot of recently. I'm eating a lot less than I have been--today I had a bowl of Cheerios and blueberries for breakfast, and a chicken salad sandwich in the afternoon, and a little while ago I had a lemon poppy seed muffin, which feels like enough food--I certainly am not hungry for anything resembling a regular dinner. I still get a lot of pleasure from eating.

I probably should try to nap a little bit if I am going to be able to stay awake for the game. I drifted off a few times during the Patriots game, but didn't get any really sound sleep.