Monday, November 30, 2009

Sleep at last

We got in bed last night at around eleven thirty. I told Marty I was feeling somewhat agitated, so he suggested that I use the haldol gel, and I rubbed a bit of it on my arm. That's really all I remember until waking this morning at twenty after eight--a deep, sound sleep, and I've dropped off for a couple of naps since then.

Not surprisingly, I feel much calmer today. Lack of sleep really affects moods, and makes everything more difficult. I'm still coughing a lot, although not as much as yesterday, which really tires me out, and has also given me the beginning of an umbilical hernia. Louise suggested I clutch a pillow firmly against my belly when I cough, to give the muscles some support.

We've been eating variants on our Thanksgiving dinner all weekend, and it continues to be just as yummy as it was on Thursday. Last night I was having a plate of all the goodies, sitting in the living room wearing my warm robe, and in the middle of dinner I suddenly got really hot. I needed to take off my robe and even then it took me awhile to cool off. I've also had a turkey and cranberry sauce sandwich for lunch twice, and may do the same today (It's about four o'clock but I'm just beginning to get hungry).

Marty is out taking Donna home--Ann was here until Nancie arrived, and Ann may come back if Marty is delayed getting home.

I'm definitely feeling better than yesterday and I attribute most of it to finally getting some sleep.

Sunday, November 29, 2009


The past few days I've been experiencing a real sense of loss, triggered by constant reminders of how weak I have become and how there are an increasing number of things I can't do anymore. The result has been a growing sense of frustration and irritability. I have moments when I just want to pick up something and throw it against the wall, although I haven't actually gotten to that point.

Really simple things, like brushing my teeth, have become a major production. I don't have the energy to stand at the sink, and I like to brush my teeth immediately after eating, so Marty (or one of my PCAs) has to set me up with my electric toothbrush (with the toothpaste already on), a towel, an emesis basin (the little curved thing that hospice got for me), and a glass of water. I brush my teeth numerous times a day, and it is so annoying that I need so much help.

Another thing that happens when I get into one of these moods is not being able to sleep at night. Although I have been dozing off during the daytime quite easily, when the time comes to go to sleep for the night I just tense up and can't get to that point of pleasantly drifting off. Having dealt with sleep problems for most of my life, one of the things I have actually enjoyed during the past year is that most nights I do sleep easily and soundly, probably better sleep than I've gotten for most of my adult life.

I don't want to take any kind of heavy duty sleeping meds--I've been using a small dose of amitriptyline at bedtime for the past few years, which most nights seems to do the trick. As a lifelong insomniac I have learned not to worry about not sleeping--when I get tired enough I will sleep, and if I'm not sleeping I can read or watch TV or play around on the computer, which I did last night. I came into the living room at about three (Marty had been having trouble sleeping last night too, but once he finally got to sleep I wanted to let him get some badly needed rest) and I think did drift off for an hour or so.

The long walk from the bedroom to the living room is about as much as I can manage these days, and standing for more than a minute or two without hanging onto something is also becoming more difficult. This morning I went to turn on the living room radio to listen to Will Shortz on NPR; I thought I just had to hit the on button but somehow it had gotten reset and I had to stand in front of it and figure out which buttons to hit, and just barely made it back to my chair (about three steps away). It took me a few minutes to catch my breath from this major exertion, increasing my sense of frustration and leaving me, once again, wanting to smash something.

My general principle is to keep my emotions close to the surface, so I suppose one day I really will start throwing things (it would probably be a good idea to have a plan for something that would make a satisfying crash without doing any real damage).

Saturday, November 28, 2009

One good day in a sea of awfulness

I've been feeling so bad all week that it was kind of amazing that Thanksgiving was so good. Friday and today I'm back to feeling weak and out of breath--it is just so discouraging. Last night I also had trouble sleeping, and was up a good part of the night watching TV. But it's at least better than Wednesday, the day I was so weak I had to make it from the bedroom to the living room in stages of a few steps at a time, with strategically placed chairs along the way.

I am just so sick of this. Every little thing makes me tired, and I have been dropping off to sleep several times during the day. The thing that scares me the most is lingering on in this stage indefinitely. In a few weeks it will be a year since I have been in hospice; at that time I said that I just wanted to live long enough to see spring, and here it is getting into another winter. There's just no point in living like this, and yet I just seem to go on and on. At least I'm not in pain--that would be far more awful--but I just continue to get weaker and weaker, able to do less and less.

Marty continues to be a source of strength and support, reminding me that he loves and cares about me. This would be so much harder without him in my life.

Thursday, November 26, 2009

Thankful on Thanksgiving

Often, when I wake up in the morning, even before trying to get out of bed, I can tell if I'm going to have a good day or a bad day, so after yesterday, which was so awful, it was great to wake up this morning and know that I was going to be much stronger. In fact, a little while ago, I just walked from the bedroom to my chair, without needing to stop, or to hold onto anyone, and not getting really short of breath--a dramatic change from yesterday.

I'm still hoping to get dressed, but even if I have to sit at the table in my robe it will still be really enjoyable. Thanksgiving dinner preparations are going on all around me--Marty, Donna, and Ann are all working hard--and Donna has added a number of additional items to my basic menu, so there is going to be lots and lots of food.

Some things got cooked yesterday and just need to be reheated, but I'm really kind of out of the loop as far as the details are concerned. I know Donna used my recipe for cranberry sauce, which she showed me the other day, and I think the stuffing got made yesterday too (we are cooking the turkey unstuffed). Yesterday poor Ann got stuck with the job of peeling all the tiny little onions that will be made into creamed onions, using a really easy recipe from "Microwave Gourmet" that I have made every Thanksgiving for years.

I got really teary and emotional this morning, which I think is just a release of tension after the awfulness of yesterday. I always try to keep my emotions close to the surface, so I just let the tears flow. I am so grateful for feeling better today, and I am looking forward to sitting at the table and being with people I care about, and who care about me, sharing a meal and all the good feelings that go along with it.

Wednesday, November 25, 2009

How low can it go?

I continue to get weaker. This morning I went to the bathroom and just barely made it back to the bedroom, where it took about five minutes before I could catch my breath. I wanted to move into the living room but just felt too weak. When Barbara, the physical therapist arrived, she suggested a few strategically placed chairs so I just needed to take a few steps before resting, and so I was able to make it, in stages, into the living room. I'm much more comfortable in the recliner, and Barbara's bodywork always makes me feel better.

Later Nancie arrived; I'd been hoping to feel strong enough for a shower but definitely didn't have the energy, so she gave me a sponge bath here in the living room, and used dry shampoo on my hair. My hope is to get dressed and sit at the table tomorrow and feel like a normal person!

Ann and Donna have been cooking a good part of the day, and Marty went out to get the turkey from Whole Foods, along with a pumpkin pie and an apple pie, and some champagne. It would be so nice if I have a better day tomorrow and can really enjoy Thanksgiving and all this yummy food. I really love turkey and stuffing and gravy and cranberry sauce and all the other stuff that will be on the table, including baked sweet potatoes, acorn squash, mashed potatoes, brussels sprouts (and I think Donna has added some other things that I don't even know about).

But a morning like today leaves me feeling very discouraged. I get weaker and weaker, everything gets more and more difficult, and I'm quite ready for it all to be over. Apparently, this sounds like "whining" to at least one reader; all I am trying to do here is to document how it feels to have a terminal illness and the effects not only on the patient, but on the family and caregivers. I appreciate those readers who came to my defence and who seem to understand the purpose of this blog.

Monday, November 23, 2009

Trying to get a good night's sleep

After being so groggy most of the day yesterday, I had no trouble falling asleep, and both Marty and I were soundly asleep at two A.M. when my Lifeline machine suddenly went off--"It's time to test your Lifeline." This machine is loud on purpose, so it can be heard no matter what room I'm in, so of course we both woke with a start, and after that neither one of us got much restful sleep. (Lifeline is a service that gives you a button to push if you should fall or have some other emergency when you're alone in the house, and they will send help.)

Marty likes to go to sleep with the TV on and the timer set so that it turns off after an hour, and I'm pretty used to that, but last night he was watching something eerie or disturbing (I can't remember exactly what), so I asked him to change the channel, and he gave me the remote so I could put on something that wouldn't bother me. I put on a show called "Platinum Weddings," which shows these really extravagant weddings, and which I enjoy in some weird way. He fell asleep, and I watched that on and off, drifting into sleep but never really soundly, thinking several times that it was morning but discovering that it was four A.M., then five, and then I must have finally gotten into a deep sleep because it was twenty after eight. Our morning pattern is to watch two episodes of "The West Wing," which start at eight, and we're almost always awake by then. I'm less groggy than I was yesterday, but I'm sure would feel even better if I'd slept soundly through the night.

This morning I called the Lifeline service, which is based at Mount Auburn Hospital, to complain, and got some "explanation" that really didn't explain much. The guy said that if it hadn't been tested in the last thirty days this could sometimes happen, and I tried to emphasize that it should never happen in the middle of the night. The upshot of it is that they are going to send me some stickers for my calendar to remind me to test it within each thirty day period, whereas I really think the onus should be on them. I am using Lifeline for peace of mind, but after this might want to reconsider if it's more trouble than it's worth.

Sunday, November 22, 2009

Never did make it out today

Maybe because I slept so poorly last night, I spent a lot of today in a semi-stupor, drifting in and out of sleep. I was trying to watch the Giants game (fortunately, they broke their four game losing streak), but even that was an effort. It was pretty clear that I just wasn't up to going out. At one point, I suggested that we go out for dinner, but I was still pretty non-functional, so that didn't happen either

I'm sleepy again now, so maybe I'll be able to sleep when I'm supposed to, at night and in bed.

After football, I was watching "60 Minutes" and they did a pretty good story on end of life care, talking about how difficult it is to raise these questions with patients, doctors, and families, and that therefore people end up getting treatments that don't benefit them and just prolongs the dying process, and meanwhile costs a lot of money. Rather than saying to myself that I should write to them, I immediately got out the computer and sent an e-mail supporting their main points and describing my situation. "60 Minutes" has run some pretty horrible mental health stories over the years, but that's no reason not to approach them on a story that they might be able to get right.

Possibly getting out this afternoon

It's still unseasonably mild, and Marty is trying to convince me to go out this afternoon, to a photography exhibit about Bethlehem. I'm coughing up a storm this morning, so I'm not sure how much energy I have, but it certainly would be nice to see something other than the inside of this house for a few hours.

If I stay home, I can watch the Giants game on TV at one, but if we go out Marty will set up the machine to tape it, which we can watch when we get back (trying to make sure that we don't hear the final score, which takes all the excitement out of it). But I think I will make an effort and see if we can actually get outside and be involved in something that takes my mind off being an invalid.

I had a lot of trouble sleeping last night (not surprising after getting more than ten hours the night before) and around six A.M. I moved myself into the living room, and have been reading and watching TV and playing around on the computer most of the morning. A little while ago Marty tried some dry shampoo on my hair (an aerosol can of some sort of powder that gets brushed through the hair), and he said it definitely looks better. If we are going out, I have to start thinking about getting dressed, as everything takes such a long time.

For awhile the sun was out, but now it's cloudy again.

Saturday, November 21, 2009


I get so frustrated when people tell me I'm being "brave." I certainly don't feel brave. I feel so useless most of the time, unable to do the simplest things without help. The only thing that still seems to work--at least sometimes--at my old level is my brain. But even there, I don't seem to have the patience, or the stamina, or whatever, to do any sustained work.

The tiredness, the fatigue, is so overwhelming. If I close my eyes, I can feel myself drifting off towards sleep. And sleep is a good thing. Last night, making up for a night of poor sleep the night before, I think I slept for more than ten hours. And it was good that Marty got a pretty good night's sleep, too. So the day got a late start; I didn't have breakfast till about ten, and I had a late lunch in mid-afternoon. Food continues to be pleasurable, anyway.

Meanwhile, I have to deal with important decisions, like whether to rent out the upstairs or turn the building into two condos. I get so worried about running out of money. I really didn't think I'd live this long, and although the general trend is definitely downward, it is really, really slow, and I'm so afraid I could linger on like this for awhile, just watching my money dwindle and getting weaker and weaker.

I hate this damn disease!

Friday, November 20, 2009

Hitting a plateau?

Today was not as good as yesterday, but definitely better than Wednesday. I've been able to get into my chair and have spent most of the day here, but I've been coughing a lot all day, and I've had a headache a lot of the day (although much milder than the one the other day). Louise was here this morning to check me out, and we had a meeting with Nancy, the social worker, reviewing the emotional roller coaster I've been on the last few weeks. It feels good to just let out my emotions and try to figure out what are the best steps for me to take from here.

Meanwhile, I've had some opportunities to use my brain--a MindFreedom International ( board teleconference, a phone interview for a Website on recovery and empowerment, and some e-mail correspondence with the hospice lobbying group. I'm hoping I feel strong and focused enough next week to write something for them. Recognizing that I still can do useful work certainly helps my overall mood, since in general I feel so discouraged.

The scariest thing right now is that I could end up plateauing at this level for an indefinite time period. To weak to wash or dress myself, needing help to go to the bathroom or brush my teeth, getting outside only on special occasions with lots of support and paraphernalia--this is not the life I want.

There are still nice things to look forward to--like Thanksgiving--but, in general, I don't see all that much to get excited about. I'm so tired, and I'm so tired of being tired.

Thursday, November 19, 2009

So many ups and downs

I haven't posted anything for awhile, but there's been a lot going on. Yesterday was an unbelievably horrible day when even the slightest exertion left me gasping for five minutes or more until I could catch my breath. I spoke several times on the phone with both Louise and Lauren, and when I had taken all the meds they suggested and still wasn't feeling any better, Lauren said I shouldn't even try to get out of bed.

This exhaustion actually started the day before, Tuesday, when Marty was out and first Judy and then Patti were here. Judy went searching under the bed and found the shield for the book light, which was all the way over under Marty's side (we figure the cats had pushed it there), and both she and Patti did quite a lot of straightening up and putting things away. When Patti had to leave, Marty wasn't back yet, so I told her to put a note on the front door for the guy from the pharmacy, saying to be patient and someone would come eventually. Marty got home just a short while after Patti left, but then he went back out to the car to unload groceries and it was at just that moment that the bell rang. It rang several times and Marty still wasn't back so I decided I had to answer it and walked the short distance to the front door (I think it's about the same distance as from my chair to the bathroom). As I was opening the door my knees started to tremble uncontrollably, so the first thing I said to the poor deliveryman was "I'm going to fall." "I won't let you fall," he said, and he put out his arms to hold me up, and just then Marty came in and the two of them helped me back to my chair, but it was very scary. Marty said that when he walked into the living room and saw my chair empty he got worried, and his first thought when he saw the guy holding me was that he was attacking me, but he quickly figured out what was going on. When I told Lauren about it yesterday she explained that my brain was sending oxygen to my lungs and there was none left over for the muscles.

Yesterday there was two other brief periods when I was left alone, first between Patti and Nancie and then between Nancie and Marty. Because I wasn't supposed to get out of bed, I peed in the diaper, which for some reason leaked so everything got wet--my nightgown, robe, the sheets, the bed pad, and even the duvet cover, so when Nancie arrived she moved the chair into the hallway right outside the bedroom so I could sit while she got all the wet stuff off the bed and into the washing machine, and then made the bed. I have only one mattress pad, which wasn't out of the dryer by the time she had to leave, so today Ann will have to remake the bed with the pad, and we definitely need to have a second one.

I was so exhausted that I kept drifting in and out of sleep all day, but I got a pretty good night's sleep last night and as soon as I woke up I could tell I was feeling stronger. I was able to go to the bathroom by myself without getting too exhausted, and a little while ago I walked into the living room and got settled in my chair, which feels like a major accomplishment.

I haven't been out for awhile--I think the last time was last Friday, when we went out to dinner at the Brazilian barbecue place in Cambridge, which we enjoyed. Fortunately, it wasn't till after we had finished eating that Marty spotted a little mouse running around between the two buffet tables. We asked to speak to the manager, who was very apologetic, and said that they are constantly trying to keep the place clean, but all kinds of things can get brought in by suppliers. He said they have an exterminator come regularly, and he really sounded sincere and concerned, and asked what he could do to make it right. I suggested that he take "something off the bill," and when it came he had charged us for just one dinner instead of two. We will definitely go back there at some point since I don't believe the place is unsanitary and we really do like the food. Of course if we see something out of line a second time we'd have to reconsider.

Marty wanted me to come with him on Sunday when he went to a photography show in Cambridge featuring pictures taken by Palestinian teenagers from the refugee camp in Bethlehem, but I wasn't feeling up to it. Right now I can't even imagine feeling up to going out, but I know things change from day to day. We've been having a string of unseasonably warm days, which I wish I could take advantage of.

Plans are moving along for Thanksgiving dinner. Marty and Donna went shopping for all the non-perishables yesterday, and I ordered a turkey from Whole Foods, and checked with their bakery department that they will have plenty of pies so they don't need to be ordered in advance. Eating is one of the few things I can still really enjoy, and I'm planning for lots of leftovers so that Marty won't have to do much more than reheating for a few days to produce delicious lunches and dinners. But meanwhile there's lots that needs to be done, and I feel so frustrated that I can't do any of it, just direct others.

Saturday, November 14, 2009

A killer headache

I slept rather fitfully last night, getting a good chunk of sleep in the early part of the night. Marty was up quite late (both of us occasionally have these nights when we're too keyed up to even try to sleep), so when I woke up after he had finally gotten to sleep I didn't want to disturb him, because I knew how much he needed his sleep. Somehow I managed to drop my itty bitty booklight off the bedside table and, feeling around in the dark, I found the main part (including the bulb, which amazingly didn't break), the batteries, the battery cover, but not the shield that goes over the bulb and directs the light. I was even able to get it put back together, and read for awhile without the shield, which created much more glare. (You can see what this looks like at Eventually I woke up at about a quarter to eight, with a splitting headache, and since I wanted to let Marty sleep as long as possible, came into the living room. I took some morphine, which didn't even put a dent into the pain, and the next hour or two was sheer hell. It was a combination of a sinus headache and pain across the whole front of my head. Eventually Marty got up, and gave me some tylenol and some ativan, and with some additional morphine I was finally able to get the pain under control. I then spent a couple of hours totally doped up, which was much better than being in pain, but unpleasantly non-functional (I was trying to do the Boston Globe crossword, which is pretty easy, but kept drifting off so that it took me well over an hour to finish it). Given the choice between pain and being so drugged, I'd definitely take the latter, but it wasn't fun.

It's now mid-afternoon and I think the worst of the drugged feeling is over, and my head doesn't hurt, but it looks like this is going to be a totally wasted day. I hope we can find the missing part of the booklight, but since both Marty and I have trouble getting down on the floor (and especially getting up again!), it may have to wait until the next time a PCA is here. I know that Marty has some interesting events today and tomorrow, but right now I can't even imagine feeling strong enough to want to go out.

Friday, November 13, 2009

Trying to go to a meeting

Reading my e-mail the other day, I discovered that a meeting of a board I sit on, Human Services Research Institute (, was meeting today in Cambridge. I had gotten an earlier notification, but had forgotten (I have a memory like a sieve these days because of all the drugs). I called the logistics person, who had already made a hotel reservation for Marty and me, and started figuring out with Marty the logistics of getting us there. He had to go to help Donna with some problems on Thursday morning, but he was sure he'd be back in time to load up the car and drive us to the hotel for the pre-meeting dinner.

Ann was here and helped me get packed and dressed, but then Marty called and said he was stuck in traffic and definitely would not get back in time. He suggested I call the hotel to ask if they had a wheelchair, which it turned out they did, so Ann drove me to the hotel and a very nice hotel person helped me into the wheelchair and brought me up to the room, where I rested until it was time to go down to the restaurant for dinner. I called the front desk and someone came immediately and brought me downstairs (it was really a pleasure to get such excellent, friendly service). There was some wine and cheese before dinner, and good conversation, with people expressing appreciation that I had come. Then we moved into the restaurant proper for dinner, and Marty arrived just as people were beginning to get their food. I had a delicious steak, served with wonderfully seasoned sauteed mushrooms, but was very tired and couldn't eat that much, although I did polish off the chocolate cake that was served for dessert.

The oxygen company had delivered a concentrator (when I arrived the guy at the front desk said that it had just been delivered and put in my room), so I had a good night's sleep, but woke up still feeling tired. The room had a wonderful roll-in shower which I really wanted to take advantage of, but just didn't have the energy. Marty helped me get dressed and we went down for the pre-meeting breakfast, which I just picked at, and only about an hour into the meeting I announced that I was too tired to continue. I called Marty, who had gotten an extended checkout till 3 P.M., so he took me back to the room and I promptly fell asleep for several hours. When I woke up Marty finished packing and we came home, and I've been resting ever since. I feel so discouraged that I didn't have the energy to do something that uses my intellect and takes my mind off being so sick. Right now I don't want to do anything except rest and sleep.

Tuesday, November 10, 2009

Tired, frustrated, and anxious

Maybe it's the letdown after the trip, but I feel so tired and with so little to look forward to. My medical condition has plateaued at a very low level, leaving me too tired to do much but apparently too healthy to die. And all the tension between Julie and me is sapping my emotional energy. As always, I'm trying to keep my emotions on the surface and let myself cry when I need to cry.

I'm turning my thoughts to Thanksgiving, which we will keep small--just Marty and me, plus Donna and possibly one or two other friends. Thanksgiving is my favorite holiday--with no religious significance, it's about community and mutual support, two things of great significance in my life. We've figured out a menu most of which can be prepared in advance, and which will leave lots of great leftovers. Planning a lovely meal with friends is a good way to keep my mind off all of this bad stuff. And I really do love turkey and gravy and cranberry sauce and all that good stuff.

A lot of people find it silly, but I really do like to use Thanksgiving as a time to reflect on and appreciate the things in my life I am thankful for. Even with all the things that are so bad in my life, dying of this awful disease, as well as the estrangement from my daughter, the amazing thing is that I still really do have things to be thankful for. Having Marty in my life and seeing daily evidence of his love and devotion is the biggest, and almost as big is the care I get from hospice, helping me to maximize the time that I have and make it as good as possible.

This morning I got an e-mail from a Website called, saying that they had selected my blog as a "Top Blog," which they will list on their site and giving me a banner about it to display on mine. I took a look at the site but can't figure out who sponsors it--it doesn't seem to be primarily commercial, but I would like to find out more about it. It does seem that it would get me a lot more readers.

Saturday, November 7, 2009

Some very tired days

Although I didn't feel abnormally tired in the early part of the week (when I was expecting to, after the trip), the last few days I've been feeling really exhausted. I seem to have lost a day, as I find it hard to believe it's Saturday already. I just haven't done much of anything.

There is a big change about to happen, as Julie told me the other day that she and Jim decided they need more space and are moving to a larger apartment nearby. She said that she would take care of advertising the apartment and doing the initial interviewing, although of course I would make the final decision. Arlington is considered a desirable place to live, so I feel confident that it won't take long to find a tenant. Oddly, I was thinking a few days ago that it must be difficult to have just one bathroom for five people, and then a few hours later she told me about moving!

I never had the energy to try taking a shower while we were away (there was some sort of fold-away built in seat in the tub in the hotel), but on Monday I was feeling strong enough, so Nancie gave me a wonderful shower. Then when she was here on Wednesday I told her I was feeling itchy all over (I had waked up several times during the night because of it), so she rubbed lotion all over my body, remarking on how dry my skin looked. And when she was here yesterday I told her I didn't feel strong enough for a shower, so instead she gave me a lovely sponge bath in bed, and with more lotion and a fresh nightgown, which made me feel great. (This is just one more example of the quality of life issues that are so prominent in hospice care.)

Marty went out to Bed Bath & Beyond the other day and bought some new fluffy pillows, and I tried last night to see if I could sleep better with my head raised a bit higher. I'm not sure if it worked or not, as I woke up several times and turned on my reading light, but each time I found that after a few minutes nothing I was reading was making sense, so I got back to sleep quite quickly, waking for good about eight. But I've been both tired and sleepy all day.

My vital signs monitor is acting oddly. Usually, the voice tells me first to put on the blood pressure cuff, and then the finger sensor, and then to push the start button, but for the last two days it has gone directly from the cuff to pressing the start button, leaving the finger sensor out entirely. I told the nurse who called me after the readings were transmitted about this problem, and she said she was leaving a note for Maureen, so I guess the machine will have to be recalibrated, either remotely or in person. Technology is great--when it works!

As I write, I'm watching the debate in the House on the health care reform bill. It is astonishing how many lies the Republicans are telling about the evils of "government run health care," totally ignoring the ways that insurance companies are the real bureaucrats between doctors and patients, denying care while making enormous profits. Even this bill, if it passes, is so watered down from what it should be that I wonder if it will make enough of a difference.

It would be really nice to go out somewhere this weekend--the weather is mild and the sun is out--but I feel too tired to even think about getting dressed. And with the change to standard time it now gets dark so early, something I always hate and which reminds me that winter is coming. Why isn't it time for me to just check out?

Wednesday, November 4, 2009

Hospice--patient centered care

My trip to Omaha never would have been possible without the support and cooperation of my hospice program, Visiting Nurse and Community Health of Arlington, Massachusetts, and the Omaha hospice program, Visiting Nurse Association of Omaha who provided seamless coverage and made me feel safe and secure. About a week before the trip, I notified Louise, who has been my regular nurse since Lauren has been out on sick leave, and the administrator of the Arlington hospice located the Omaha program and sent them my records. Before we left, I also called Omaha to give them information about our flights and where we would be staying, and when we arrived at the hotel I called to let them know the trip had gone well. The nurse on call, Scott, came to the hotel, although it was quite late in the evening, just to check me out (he also brought some distilled water which we needed for our "elephants"). He was so cheerful and friendly and encouraged us to call at any time if there were any problems.

When we needed to call, the next day, because I was feeling so awful, sick to my stomach and probably feverish, the nurse on call, Amy, came and stayed for several hours, first administering some medicine that she had brought with her at my request (a compazine suppository), and then, when that brought only partial relief, she called the doctor and went out to get some additional medicines. All together I think she was with us for several hours, and she was so supportive and positive while I was weepy and miserable.

The hospice movement attracts certain kinds of people, who find it rewarding to work with dying patients, although I suppose many people would not find it appealing work. But in all my experiences with hospice, both when my dad was a hospice patient, and now my own, I have found a group of people who are upbeat without any kind of false cheerfulness, but who instead can help to find a positive aspect in any situation.

When I first came into hospice, I was shown a diagram of patient-centered care, with the patient represented by a big circle in the middle, surrounded by smaller circles standing for family, nurses, social workers, etc., all of whom are there to help the patient achieve his or her goals. So when I said I wanted to go to Omaha, many people at both agencies had to do a lot of things to make it possible, without any sense that they were going out of their way or doing something "extra" or unnecessary--if it was something I wanted to do, hospice was there to make sure it happened.

So when I learned recently that Congress has proposed cuts to Medicare hospice funding, I found it shocking. According to the Alliance for Care at the End of Life, hospice programs are facing an 11.8% rate cut due to regulatory changes and health care reform, which could lead to programs not being open to new patients, or even having to close. Cutting hospice is certainly not cutting the "waste, fraud, and abuse" that we have been hearing so much about in the health care reform debate. In 2007, an independent study found that hospice saved Medicare $2 billion, so it makes no sense to cut these programs. (See

This is, of course, the same institutional bias that we have always complained about in the mental health and disability advocacy communities. Because of the big taboo against talking about dying, people end up dying expensive deaths in hospitals in which quality of life is not a major concern, and which Medicare and private insurance pay for without question, instead of dying at home (as most people say they want to do), with compassionate hospice care that puts their quality of life at the forefront.

Somehow, we need to build a coalition around this issue--cutting hospice is wrong morally, and wrong fiscally. There certainly is billions of dollars of waste, fraud, and abuse in the health care system, where some people are getting very rich, but it's certainly not in hospice programs, which run on a shoestring.

Tuesday, November 3, 2009

The rest of the trip...coming home

After I gave my talk I was exhausted, but also exhilarated. So many people came up to me, wanting me to sign their copies of my book, or the program, or to give me their cards or things they had written, or just to talk. Eventually we made it back to the hotel room and were able to rest and relax. I felt so totally different from the way I'd felt on Thursday, when I was so miserable and scared and wondering how we were ever going to get home.

We talked about going out somewhere for dinner (the hotel van was available to take us to an area with lots of shops and restaurants), but I was nervous about using up any excess energy before what was sure to be a tiring travel day, so we ended up eating in the hotel restaurant again, as we had the night before. It was nice when my good friend Pat Risser pulled up a chair and we got to have a nice long visit.

On Friday evening after dinner we went to see some of the talent show, which is always a mixed bag, but included some pretty talented people, especially one guy from West Virginia with a gorgeous voice. Gayle Bluebird did her "Henrietta" persona, which she does every year; this year, her act was that she was talking on the phone with Mark Davis, who was too sick to be there, so he couldn't do his specialty, in which he appears in full beauty pageant regalia as "Miss Altered States of the Arts"! It was very funny and was nice to have Mark there, at least in spirit. (I love the way in which the GLBT contingent at Alternatives have named themselves the very in-your-face Fruit and Nut Bar).

The talent show was supposed to include an "ice cream social," so Marty decided not to have meat for dinner so he could eat ice cream later (since he observes kosher requirements); what a disappointment when we found just some little cups of sherbet and frozen fudge bars. But when we stuck our heads in after Saturday dinner at the Conference Halloween dance, it was a nice surprise to find a hotel waitress cutting up a big cake and we each had a big slice, and then called it a night. (Marty told me he had had a conversation with the hotel restaurant about making a small cake for my birthday--which was on Friday--and that it had ended up with them saying it wasn't possible.)

When Bryce, the guy from Philadelphia who set up our tickets asked about scheduling, I told him we definitely didn't want to take any early flights, so we weren't scheduled to leave until four, which turned out to be a very good thing (in addition, the clocks had gotten set back an hour to standard time, giving us an extra hour). We started packing, and then waited for one of the hospice nurses, Kathy, to come to take the port out of my arm that Amy had left in place. Everybody we had dealings with from the Omaha hospice was just so nice and friendly and helpful that we decided we would send a card of appreciation, and I have some nice note cards (yes, actual mail rather than e-mail!).

Then we went for the hotel's Sunday brunch, as we didn't want to end up in the same situation as on the trip out, when we ended up not eating all day, which may well have contributed to me getting so sick. Marty and I each got an omelet--mine was mushrooms, onions, ham, and cheese--but when I started eating I got hit with one of those extreme fatigue episodes and had to struggle to eat about half of it, along with some delicious fresh fruit, juice, and tea. Fortunately, I was mostly packed, and we had time when we got back to the room for me to sleep for over an hour. Marty said he had a hard time waking me up (when I was falling asleep I couldn't imagine how I was ever going to manage the trip), but sleep was restorative and I felt much better.

The trip itself went smoothly. We were worried about the portable concentrator, which has a much shorter battery life than promised, but between the extra battery pack and keeping the concentrator plugged in before we boarded each plane, the oxygen lasted. On the first leg, we were seated in Row 3, so I said I could walk onto the plane once I got out of the scooter at the end of the jetway, but on the Cincinnati-Boston leg we were further back so they used the aisle chair. Because they were small planes there was no jetway when we got off, both in Cincinnati and in Boston, so we had to use a rather scary lift, but in both cases my scooter was waiting for me right on the ground and so it was easy to get into the terminal.

One of the things that has changed since my flying days is that airlines charge for checked bags. United exempted anything labeled "medical equipment," and charged $10 per bag for the others; Delta's charge was $25 and they did not exempt medical equipment--very annoying!

We had a ride arranged, which also worked out perfectly, but by the time we were in the house it was about midnight and we were too tired to think about much else but getting to bed, and unpacking only what we absolutely needed, like our elephants and my nebulizer. I'm really surprised that I'm no more tired than normal, after all these stresses and expenditures of energy.

It's good to be home!

Monday, November 2, 2009

Saturday's award ceremony

Lunch on Saturday was the whole reason for my trip. Marty and I were seated at the head table, along with Joseph and another staff member of the Mental Health Association of Southeastern Pennsylvania (his organization), and I was sitting next to a woman I didn't recognize, so she said she was there because of her husband (sitting on the her other side), who turned out to be Senator Nelson from Nebraska. When it was his turn to speak, he went on and on and on about all his accomplishments in mental health, most of which had only tangential connections to our issues, although I was glad he mentioned probably Nebraska's most prominent consumer/survivor activist, J. Rock Johnson, and it was clear from what he said that they had had many interactions. When he'd finally finished, the two of them couldn't get out of there fast enough, which I found rather rude!

I had said to Marty that I wasn't sure what I would say, but felt confident that it would come together, but first, when I was introduced, the whole room erupted in chants of "Judi!...Judi!...Judi!..." which went on and on, and everyone rushing forward with their camera phones so that I felt I was surrounded by the paparazzi! When I finally got to speak, I was close to tears. I talked about how important this movement has been in my life, transforming me from someone who saw herself as a helpless "mental patient" to someone who was part of an important movement for social change. I talked about the work we had done, and what we had accomplished, but also how much more that needed to be done, and how gratifying it was to see so many new people getting involved, bringing in their own ideas and new energy, but recognizing that were building on what had come before. And I talked about what my life has become now, and how I saw hospice as the model of what we wanted the mental health system to do--putting the person's needs in the center and helping to figure out how to make those ideas and dreams happen. I certainly never could have made this trip without all the support I got from hospice both here and in Omaha.

I'll write more about the trip home (which went quite smoothly), but right now I'm tired and ready for bed. Amazingly, I'm not extraordinarily tired, and when Nancie was here earlier I even felt strong enough for a shower.