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.
Tuesday, January 5, 2010
Monday, January 4, 2010
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!
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!
Saturday, January 2, 2010
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.
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.
Wednesday, December 30, 2009
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).
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).
Tuesday, December 29, 2009
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!
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.
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.
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