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.