Saturday, October 31, 2009

The trip went well, but then disaster struck

After all the worries about all the things that could go wrong, things went about as well as they could on Wednesday. Ann came first thing in the morning to help with last minute packing and organizing, and Tim arrived on schedule to load everything up, including the scooter. As we started driving to the airport and he was asking what route to use, I suddenly remembered what the cab drivers call "the back way," which keeps you off the highways which can get jammed, and I was able to remember all the twists and turns. When we pulled up at the United terminal we easily found a porter for all our stuff, while Marty set up the scooter and we rolled up to the counter. It's been so long since I've been on a plane that I'd forgotten all about reserving seats, so we ended up pretty far back, but when we got to the gate the agent there was able to move us a few rows further up. As promised, I was able to drive the scooter right to the airplane door, and it was then hand lifted down to baggage, while I was put into an aisle chair and rolled to my seat.

The woman sitting in the window seat was also going to Nebraska (to Lincoln), and when I asked Marty if we could tell from the airport diagram where the commuter flights left from, she said they were usually in another terminal that looked to be a very long way from where we were coming in, so I worried about that for awhile. But once we were off the plane (again, the routine with the aisle chair, and, as promised, my scooter waiting for me just outside the airplane door), the agent told us that our flight was just at the other end of the terminal we were in. I was worried about Marty having to walk that far, but there was one of those carts that transport people with disabilities right there, so Marty got on that and I rode my scooter to the gate. It turned out that our flight was going to be late, because the crew was coming in on another flight, so there was time for a bathroom break. We should have gotten something to eat, but for some reason didn't, and eventually the crew arrived and we were able to board. The flight attendant asked to see the doctor's letter for my oxygen, which we hadn't needed until then. By that time, we were on the auxiliary battery pack, as this portable concentrator just does not have the battery life we were told it would.

Our arrival went smoothly once again, with my scooter ready for me, and our baggage already on the carousel by the time we got to baggage claim. The hotel van was waiting, and although it was quite full they were able to find room for us and all our stuff, with me in the scooter using the lift. At the hotel, a bellman took all our stuff from the van to our room. By this time we were both exhausted, and quite hungry, although I knew that I was only going to be able to pick at my food, because I was so tired. I also called our contact person at the Omaha hospice, because the large concentrator had not been delivered, so they put in a call to the oxygen company, and the technician arrived with the machine at just about the same time as Scott, the hospice nurse, who checked me out. I was amazed that I was feeling as good as I did, just very tired, and once we had eaten we went to sleep fairly quickly.

Unfortunately, I woke up on Thursday morning feeling awful, sick to my stomach, and with a stuffy nose that made it hard to breathe through my nose (and when I breathe through my mouth I'm not getting oxygen through the nasal cannula). I was feeling worse and worse. Marty urged me to take my pills but I said I was just going to throw them up. He tried the haldol cream, but it had no effect, and I was getting somewhat hysterical (and I'm sure very difficult). Marty called hospice, and a wonderful nurse, Amy, came. She called the hospice doctor, who prescribed some meds, so she went out to get them, and when she came back she gave me a couple of injections. Pinkypine so rarely has to do his job of getting held and squeezed whenever I get a needle, since I get one so rarely these days, but good bear that he is, he did quite well.

It took awhile, but eventually the meds kicked in. I was a bit alarmed that one of them was haldol, but I imagine it's a much lower dose than when it's used as a psych drug. Amy also put some sort of port into my arm so that Marty could give me additional drugs, which he did even though the thought of it makes him feel queasy. It didn't involve a needle, but a plastic connector that went into the port, but he still didn't like it, although he certainly rose to the occasion. Amy had said the meds would make me sleepy, and even though I'd slept a good part of the day, I woke up Friday morning feeling much better, and once again able to breathe through my nose. I was also hungry, so Marty went downstairs to the buffet breakfast and got there just as they were closing up. He brought some fruit and danish (and some bacon that my stomach didn't feel ready for), and I ate and drank and took all my pills, and eventually got dressed and we went to lunch.

I had missed the Thursday evening event where I was given the first annual Judi Chamberlin Joy of Advocacy Award, but saw Joseph Rogers at lunch, where he told me he had the actual award, which was a huge jar filled with chocolate! He said he would get it for me, but I told him we had so much stuff to transport that I would much prefer that he ship it to me. I was able to eat a reasonable amount of lunch, and was feeling pretty good. On Thursday, in my semi-delirium, I kept saying what a mistake the trip had been, and wondering how we were going to get home, but now I feel much more positive. I called hospice to report that I was feeling better, and got another very nice nurse who was familiar with my case and was glad to hear the good news.

It's now Saturday and we actually made it down to breakfast, and we're now resting until lunch where I'm being honored. It is so good to be here and to be seeing so many people that I thought I might never see again, as well as meeting people who are telling me how much my work has meant to them. This morning's speaker was Andy Imparato of the American Association of People with disabilities (, who talked about the importance of cross-disability work and pointing to a lot of recent successes in Washington, which was good to hear. He and I got a brief chance to talk afterwards, and we're going to talk more in the next few weeks.

Through all of this, Marty has been an absolute rock, calm and steady when I needed him, and doing a lot of unpleasant tasks without complaint. Having him in my life continues to be wonderful.

Tuesday, October 27, 2009

Getting ready to leave

After accomplishing almost nothing yesterday, I feel much more energetic today, so I have been working today at getting packed and organized. I suddenly remembered yesterday evening that each airline needs a signed form from the doctor regarding my oxygen (which we both knew about last week, but then forgot), so today Marty took the forms to Dr. Meyer's office, and I called the airlines regarding the other problems, which I hope are now not going to be problems.

We have arranged a ride to the airport on this end, but I forgot about needing a ride at the other end, so I've put in a call and sent e-mail about that. I had asked the guy from the Mental Health Association of Southeastern Pennsylvania, which is organizing this year's conference, to make sure we didn't have to be on any really early flights, so we are not leaving Boston until 1 P.M., and our flight home leaves at 4 P.M. This morning we both slept until after nine--amazingly late--so I think tomorrow we will need to get up with the alarm, as there is some stuff that can't be packed till the morning (like my nebulizer, and both of our "elephants" (which is what we call our bi-pap machines, because of the hose that looks like an elephant's trunk).

I've talked with someone at the Omaha hospice, and they sound very enthusiastic about my coming there. So now I just have to hope that everything goes smoothly with the flights, my scooter, making the connection, and all the details of flying. Fortunately, I'm feeling very strong today, and hope that things will be as good or better tomorrow. Unfortunately, Marty isn't feeling well--last night when we were getting ready to go to bed he started feeling very weak and out of it, and even after a night's sleep he is still not feeling great. It's a little scary for me (and I'm sure for him, too), but I hope he'll be feeling up to traveling tomorrow.

Another amazing thing that happened is that I got an e-mail from someone who works for an organization in Washington that lobbies for hospice and palliative care issues, who came across my blog and wants me to help them lobby against proposed cuts in Medicare hospice programs. It's the exact same issue as in mental health--cut community programs that save money and improve quality of life, even though it will end up costing more down the line. I e-mailed her right back and also left a phone message, and am looking forward to finding out more.

I got a call this afternoon from Lauren Spiro, who is the staff person for our organization with the mouthful of a name--the National Coalition of Mental Health Consumer/Survivor Organizations (, reminding me that I will be receiving the first "Judi Chamberlin Joy in Advocacy" award at their meeting on Thursday evening. She was so excited that I will be there and was hoping I could receive it in person, and I told her I would if I had the energy, which I can never predict in advance. It's being held at a nearby hotel but she said there is a walkway connecting the two, so it won't be a problem with my scooter, as long as I'm not too tired.

There's still a lot I need to do, so I'd better end here.

Monday, October 26, 2009

Early Monday morning

I took a long nap yesterday afternoon, so I guess it's not surprising that I woke up a little before five and couldn't get back to sleep. I came out to the living room so as to let Marty sleep peacefully for as long as possible. I feel good again today, although I'm still getting these exhausting bouts of coughing.

We really have to spend some time today getting ready for the trip and seeing how we're going to organize the enormous amounts of paraphernalia that has to come along with us. I need to check with hospice to make sure everything has been arranged from their end, and I want to call the airline to make sure that there won't be a problem with Marty's ticket (which has an extra "F" in his last name), or that I am carrying a controlled substance (liquid morphine, in a prescription bottle with my name on it). And we have to reserve a station wagon taxi, as I'm sure all our stuff won't fit in a regular taxi.

Sally called from Berkeley yesterday after reading that I was coming to Alternatives--she was really excited that we're going to see each other again. We had an interesting talk about the unhelpful things people say that they seem to think are comforting. When she tells people that she knows her cancer will come back eventually they say things like, "No, it won't," and "You're going to be fine," which is totally discounting her knowledge and her ability to live as fully as she can despite it. Similarly, I hear that I should live for a long time when that's really not what I want at this point--I want to do as many good things as I can, but always with the knowledge that the life force will run out at some point. I think I'm about as at peace with that knowledge as anyone can be, and it feels bad to hear it being totally discounted by someone who seems to think it's being helpful. It's that old elephant in the room again--death, who no one ever wants to acknowledge. But it's there, acknowledged or not, and only gains in power through being taboo.

The Giants were on TV last night, blew a lead and then could have won if Manning pulled one of his last minute touchdown drives, but it didn't work last night and it's not something a team should count on if it wants to be a winning team. Nonetheless, they still lead the division.

It's a little after six and I might just fall asleep again.

Sunday, October 25, 2009

I can't explain it...

I woke up a little while ago and even before opening my eyes, could tell that I was feeling much better. It is so frustrating that I have these awful days, especially yesterday when we had such nice plans for the day. But I guess I should be grateful that it was just the one day.

A comment a reader posted on the last entry (to which I wrote a short comment as well), makes me think about all the ways I have benefited by being in hospice care all this time. The biggest thing is that, rather than cycling between the hospital and home, I am at home surrounded by support, and far more comfortable than I could ever be in the hospital (which is definitely not set up for the comfort of sick people!). The reason why, I think, people are surprised that hospice patients can get outside, and even travel, is because most hospice patients enter in the very final stages of dying. I think there are a lot of reasons for this, mostly centered around the idea of death as the last taboo. No one wants to mention death when talking with, or about, a very sick person--it is the proverbial elephant in the room. And most people's image of hospice is "that place you go to die," when in fact it is so much more than that. So a lot of people are subjected to a lot of unnecessary and expensive treatment that can't help, and can often make the person feel worse, because any mention of "dying" or "hospice" is seen as "giving up." Yet a hundred years ago most people did die at home, with their families around them--this was the norm. Modern medicine has achieved a lot of great things, but it has also medicalized natural processes, like childbirth and dying. Now most people die in hospitals, although studies show a majority of people want to die at home. But because of the taboo, and everyone being careful not to talk about the things that so much need to be talked about, people die alone and isolated and surrounded by machines that beep and buzz--not exactly a peaceful way to die.

My dad always said that he wanted to die by "just going to sleep and not waking up," and hospice made that possible for him. I want the same thing for myself. When I first entered hospice my wish was to live till spring, and now spring and summer are past and I'm still here. I'm ready to die in my mind, but my body just isn't going along.

Saturday, October 24, 2009


We had a nice plan for today, attending a showing of a movie that's a part of the disability film series being put on by the Cambridge Commission on Disabilities, a classic of the disability rights movement--"When Billy Broke His Head and Other Tales of Wonder." But I had a rough night, waking up coughing and gasping for breath several times during the night, and then waking in the morning very weak and short of breath. I dozed on and off into the late morning, then managed to drink some tea but didn't feel like eating. I finally had a chicken salad sandwich in the late afternoon, after asking Marty to make it several hours earlier but then feeling queasy when I thought about eating it.

As happens so often, now that it's evening I'm feeling better and stronger. It's important for me to maintain my energy so we can leave on Wednesday for Omaha. Everything appears to be set; the tickets have been bought by the organizers, and we've spoken with the airlines about disability accommodations. I am able to take my portable oxygen concentrator on board, and they have promised that I can ride my scooter to the door of the plane, and that it will be last loaded and first off, so I will be able to get on it when we deplane. That's how it's supposed to work, anyway--we will see how it goes in practice. In each case, we have to take a commuter plane on the leg that involves Omaha, which probably will require my climbing a few steps into the plane, which I can do if they preboard us and give us enough time so I can do it slowly.

I am really looking forward to this trip. It will be good to be away from the various tensions here, plus I will have a chance to see a number of people that I haven't seen in ages. Our room is in the conference hotel, so I can take part in as much of it as I have the strength for, and then relax in our room where I'll be able to meet with people informally. I asked the hotel for a handicapped accessible room--the best of these have roll in showers, although the more usual arrangement is just extra grab bars, which isn't too helpful for me. I can't take a shower unless I can be sitting down, as I get too tired otherwise.

I'll need to check on Monday to see if hospice has made the necessary arrangements for me to be covered by another hospice program while I am there. Last time (the trip to the Catskills which we never actually took) Lauren arranged everything, but she has been out sick all this week and I hope Louise has been able to get the information she needs to set things up. When Joan, the social worker, was here on Friday she said that she is quite pleased that I am going on this trip, which she thinks will be very good for my morale. I quite agree--I'm so sick of sitting here and staring at the TV, and I don't have the mental energy to read anything more than the newspapers, and my New Yorker and Vanity Fair. I may take a book with me on the trip to see if I can read something light.

I hope I can get some restful sleep tonight.

Thursday, October 22, 2009

Consumer-controlled personal assistance services (PAS)

There is no doubt in my mind but that one of the great achievements of the disability rights movement is the development and funding of a PAS program that enables people with disabilities to hire, train, and (if necessary) fire a PCA, but it is, nonetheless, a very difficult thing to do.

A PCA becomes much more than "just" an employee. He or she becomes intimately involved in the life of the person with a disability. When the prevailing model of "helping" people with disabilities was the medical model, the person with the disability was viewed as the "patient," and the "service system" decided what services that person needed, and then provided them, often in ways that the disabled person found unsatisfactory or worse. So when Ed Roberts and others developed the consumer-controlled PAS model, it was an enormous step forward. The person with the disability was able to shed the role of "patient" and instead was able to participate in the larger community, with PAS providing many of the services necessary to make that possible. The person with the disability, instead of being seen as somehow deficient, instead became the expert on what services were needed and how they should be provided.

In the teaching I've done over the years about this model, I often use the example of getting a shower vs. taking a shower. In the medical model, the shower is scheduled according to the needs of the provider or the institution. The person with a disability is objectified, and the shower is carried out in ways that may be personally humiliating (like getting naked in front of someone who has power over you). The water may not be at the temperature the person would like. The undressing, washing, redressing, and so forth is being "done to."

In contrast, the PAS user decides when he or she wants to shower. The PCA is instructed on personal preferences (water temperature, type of soap, how many towels to use, etc.). Individual needs direct the ways the service is carried out. In both cases, the end result is a clean person, but the method of achieving it is quite different.

So, although I've often lectured and written about how the person with the disability "hires, trains, and (if necessary) fires the PCA," in actual practice it is not at all that simple. The relationship between the PCA and the service user is complex and quite personal, and the decision to fire a PCA will almost certainly lead to emotional pain all around.

The hospice model has many similarities to the disability rights model, in that the dying person is seen as the center of a complex web of services provided by various people (nurse, social worker, chaplain, home health aide, etc.), but always with care and attention to what the dying person wants. When I became too weak to shower by myself I specifically chose not to have that service performed by a PCA, but instead by a home health aide who works for hospice, because it felt more comfortable emotionally. My home health aide, Nancie, is someone I feel very comfortable with, but, at the same time,. when she is showering me there is a certain impersonality that helps me to cope with my sense of loss and inability to care for myself. That's my choice; another person might make a different one. In either case, hospice is there to support me and ensure that I am getting my needs met.

Monday, October 19, 2009

Tired, bored, frustrated

Yesterday I didn't have the energy to get out of bed. I watched football all day--first the Giants losing their first game of the season, to New Orleans, and then the Patriots blowing out Tennessee--I think the final score of that one was 51-0. When the Pats game came on I was surprised to see snow on the field and asked Marty if it was snowing here--he said it wasn't but about fifteen minutes later the snow started here--first of the season. There wasn't much here but there was quite a bit there.

Today at least I had a little more energy. I have been in the living room most of the day. Tim came for his regular Monday morning visit, then Ann arrived and the three of us talked for awhile about psychiatric rehabilitation and the changes that people are capable of making when they have the right supports, as compared with low expectation programs that infantalize people so that they never become independent.

Nancie arrived about two and I told her I was feeling strong enough to take a shower, which always helps my mood. It feels so good to be clean all over! I didn't sleep much last night because I have been feeling so distraught, but I'm tired now and hoping I will be able to sleep tonight.

It looks like we will be going to Omaha for the Alternatives conference--the guy who's been working on it in Philadelphia called me with flight information, and I should be getting details by tomorrow. I'll need to talk to Lauren about getting hospice coverage for while I'm there, as well as oxygen--I will give her a call tomorrow. I hope Medicare is flexible and will allow me to travel.

It will be good to have a chance to see a lot of people I haven't seen in awhile, and this should make up for not being able to go last year when it was in Buffalo and we were going to drive there. So that's all something to look forward to. There isn't much that's good these days.

Saturday, October 17, 2009

Slow, boring days

Here it is Saturday again, and I am just watching time creep slowly by, with little to distinguish one day from the next. Yesterday Marty suggested that we go out for dinner, just to get out of the house, and I suggested the Tibetan restaurant we went to a few months ago with a group of Marty's friends, which I hadn't expected to like but was quite surprised by, and we had another delicious meal. As always, it was good to get out.

On Friday, we had a meeting with Nancy, the new social worker, and a lot of simmering hostility between Marty and Julie came out into the open. Although this is very painful for me, I think that it's better to get these things out to the point where they can be talked about, and I am hopeful that we will get things to a better point. It's very hard for me to see the people that I care about not getting along, but I know that they both care about me and are trying to do the right thing as they see it. Nancy met with me alone, briefly, and then went upstairs to talk with Julie alone, and we're all going to meet again next week.

I continue to think things would be better if I died soon--I'm just hanging around being unproductive and unhappy and spending money, and I am going to hate it when the weather gets cold and it gets dark earlier and earlier. When I first went into hospice I said that my hope was to live till spring--I certainly had no idea it would be this long. There just doesn't seem to be any point to it.

Wednesday, October 14, 2009

A night with little sleep

After being asleep for just a few hours, I woke up around three and couldn't get back to sleep. So I just read my New Yorker and surfed the Web for awhile. At one point Marty woke up and asked why I was awake, which always seems like a silly question ("I'm awake because I can't sleep"). I urged him to get back to sleep and eventually he did. As often happens, I'm actually less drowsy today than I was yesterday after a good night's sleep.

Nancie was here for a couple of hours and Marty asked her if she could cook the potato casserole, which she did, so I know what I'll be eating for the next few days. Ann is here with me now--Marty is out running errands, and then will be back here briefly before going out to a meeting.

After yesterday's attack of the blues, my mood is much better today. I don't know what brings on these mood changes, but I'm just trying to ride them out as best I can. It's so hard to deal with being so weak and so unable to do even the simplest things for myself. I want to get out as much as possible--I hate just sitting here and watching TV to pass the time. I don't know why I'm stronger than I was a few weeks ago, and I'm not even sure it's a good thing. When I thought I was going to die soon, I felt such a sense of peace. But instead of getting weaker, I got stronger. I wish I knew how long this was going to go on, but as Lauren has told me so often, no one knows that.

Tuesday, October 13, 2009

More tired today than yesterday

I'm much more short of breath today, as I discovered when I got up to go to the bathroom and had a hard time getting back to bed. I sat on a corner of the bed while Marty rubbed my back gently and eventually helped me back into bed, where I finally caught my breath. Now I'm in the living room, and again it took awhile for me to breathe comfortably. So I'm just planning to stay put and try to be as comfortable as I can.

Marty is out meeting with Marie, and Ann is here with me. He's also going to go grocery shopping, and he is going to cook the potato, ham, and cheese recipe that I enjoy so much. It makes a big trayful that I can eat for the better part of a week (with some green beans, it even makes a balanced meal). The last couple of times I made it with Ann helping me, but that was months ago and I'm much weaker now, so I was delighted when Marty said he would cook it (he can't even eat it, because, although he's far from strictly kosher, he doesn't eat ham, or dishes that mix meat and milk).

I had a good night's sleep last night, sleeping very soundly and I don't think waking up at all during the night. Adding the ten extra milligrams of amitriptyline really seems to have done the trick.

Monday, October 12, 2009

The new social worker

On Friday, Joan, who has been filling in as the hospice social worker, came with Nancy, who will be the new social worker, and both of them spent some time talking with me, Marty, and Julie, and it was a real clearing of the air. I think I'm going to feel good about working with Nancy (although we jokingly told her that she would have to change her name so as not to get mixed up with the Nancie who is the home health aide--still another name to get things confused).

Nancy also had the papers for me to sign for Medicare so they will pay for my hospice care, effective October 1st. Now I have to figure out which company to sign up for to get the drug benefit, as I still have to pay for my Celebrex, the only one of my medicines not provided by hospice (since it is not related to my primary condition). This means finding out how much I would have to pay for the drug without insurance, and then comparing it with what the various companies would charge. I think this is all doable on the Web, but it's very annoying that it has been set up this way (which was done by Bush to the great financial benefit of drug companies).

Nancy will be coming back on Friday for another session with the three of us, which I hope will lead to clearing up any misunderstandings or tension that might arise. I do much better when things are calm and relaxed.

A busy, active weekend

Saturday didn't start out too well. I was sitting in the living room pretty early in the morning, when suddenly, in an instant, I went from feeling no pain at all to possibly the most intense headache I have ever had--the whole front of my head felt like it was about to explode. Over the next three hours, I took tylenol, morphine, ativan, and the haldol gel, but only gradually did it subside, and until then I was pretty miserable. That, plus the iffy weather, kind of ruled out the trip to Topsfield, and we decided we would go on Sunday instead. I had wanted to reserve Sunday for watching the Giants (the first time they've been on TV in several weeks), but decided we could tape the game and as long as I didn't know the outcome I could watch it when we got back.

So instead we made a shorter excursion, to Lexington (which is the next town to the north) to the National Heritage Museum (, which I'd been to several times but Marty had never been. It's a lovely museum that always has interesting exhibits, and this time they had several about clocks, as well as one on the history of Masons in the U.S. (the museum was started by Masons), and we spent several pleasant hours going through it. We decided it would be good to keep an eye on when the exhibits change as it certainly would be worth going again, especially since it it nearby and free.

We had hoped to get out of the house on Sunday by nine thirty, but it was closer to ten thirty when we left, with all our various paraphernalia. When Marty filled the portable oxygen machine from the big tank it froze up (which happens sometimes--I think it's certain weather conditions) and no oxygen was coming out, but I was sure that it would unfreeze during the ride, and I would be fine since I would just be sitting and not exerting, and in fact that's just what happened, as it finally started giving that reassuring "puff" to let me know that it was working. Meanwhile, once we got off the highway on the one lane road to the fairgrounds, we got stuck in an enormous traffic jam that just crept along and we weren't sure we were going to be able to park once we did get there. Marty and I started singing old camp songs to pass the time, which had us all in hysterical laughter, especially when we started "arguing" over the lyrics to songs we barely remembered and hadn't sung in thirty or forty years!

When we finally got to the entrance to the parking lot there were cops just waving people to continue on (presumably to another lot), but when we showed our handicapped placard they waved us into the lot and we found a space quite near the gate. Because Donna was in a wheelchair and I was in my scooter, we got in free, and Marty "complained" because they didn't accord his cane the same privileges and he had to pay the admission fee.

There was lots to see and Marty and Donna (who had attended many previous fairs there) had a good idea of what they wanted to see first, and I was quite content with whatever we did. There was, of course, loads of junk food, but when we ate I got something relatively healthful (a turkey dinner with stuffing, gravy, potatoes, green beans, and cranberry sauce). I had brought along a bottle of my iced green tea since there seldom are any unsweetened beverages. I was feeling good and didn't get tired, as I expected.

The main attraction was the famous circus family, the Flying Wallendas. We asked about wheelchair seating and were told just to go in and park in the front of the first row of bleacher seats. We were afraid we were blocking people's view but were told it was no problem, as everybody would be looking up. There were some big wind gusts and it was announced that wind was the main enemy of jugglers and tightrope walkers, but they managed to do all of their main tricks, although the jugglers did drop a few things. They not only walked the tightrope, but also rode bicycles on it, in one case with several people balanced on top of them.

There was also a petting zoo with lots of baby animals, an enormous sand sculpture, the largest pumpkin (in it's own little glassed-in enclosure), a flower show, and lots of other stuff, ending with a ride on a carousel. I had talked about riding the ferris wheel as well, but decided not to. By that time, my oxygen machine had stopped puffing, and we decided it was time to get back to the car (where we had the portable concentrator), but we did stop to get some apple crisp with ice cream for dessert.

The ride home went quickly (without the traffic jam), and I was surprised at how good I felt once we were home. Marty got me settled in the living room with the tape rewound, while he went to take Donna home, and I got to watch the Giants absolutely blow away the Oakland Raiders 44 to 7. The game was so lopsided that the network shifted away to another game in the third quarter, so I didn't get to enjoy the whole thing, but I was really happy as the Giants are now five games into the season with five wins. This is definitely the way to start a season!

Marty got back a little after ten and we watched TV for awhile and then went to bed. We both were quite pleased with how good I was feeling, not weak at all, or extraordinarily tired, but just pleasantly worn out from a long, enjoyable day.

Thursday, October 8, 2009


There are no answers to these questions. Why does it take so long to die? Why am I growing weaker so slowly? Why is every little thing such a struggle? Why can't I just go to sleep and not wake up?

People get upset when they hear me talking this way. I'm supposed to keep feeling "optimistic" and not give in to "depression," but I don't think these labels apply. To me, an "optimistic" outcome is one that will get me out of this limbo, and I am not depressed but am quite realistically evaluating my situation. I'm bored, and can distract myself only to a limited degree by reading or watching TV. I still enjoy visiting with people more than just about anything else. I had an e-mail from Dorothy that Laura won't be able to come tomorrow but Dorothy will be coming, and Laura will visit another time. Tim was here for a few hours today, which was enjoyable.

I didn't get a good night's sleep last night because Marty had a restless night and spent most of the night in the study. But each time I woke up I was able to get back to sleep after reading for five minutes or so. I've dozed a little bit during the day but am hoping for a solid night's sleep tonight, as the increased dose of amitriptyline usually does the trick.

Marty is going to get Donna tomorrow and on Saturday, weather permitting (and my having sufficient energy) we'll be going to the Topsfield Fair ( which I hope will be fun. I don't mind getting tired from doing something interesting--in fact, I welcome it.

Wednesday, October 7, 2009

Weak and discouraged

It is so frustrating to feel myself getting weaker and weaker. There's so little I can do by myself and when I try I realize quickly that it is beyond my abilities, and it takes longer and longer to catch my breath. I now brush my teeth in bed, using one of those little curved basins, as standing up at the sink without holding on just wears me out. I really don't see the point in going on this way, and I wish things would just be over with.

But, at the same time, there are still things to look forward to. I got an e-mail the other day from Joseph and Susan Rogers, who are organizing this year's Alternatives conference ( in Omaha, saying that I am receiving an award at the October 29th luncheon, and wanting to know if I could attend in person, or else send a video or a letter. I asked them to look into the logistics of the airline transporting me, my scooter, my oxygen, and Marty as my PCA, and to let us know what could be arranged. It would be great to be able to go, especially since we had planned to go to last year's conference, in Buffalo, which we would have driven to (making an overnight stop halfway), but then I got too weak to stand up and ended up in the hospital on IV antibiotics. That was my last hospitalization, which ended up with the referral to hospice. But I had told so many people that I would be seeing them at Alternatives so it was a big disappointment all around.

Barbara, the physical therapist, was here earlier, and did her usual laying on of hands which I find relaxing and energizing, and then Mindy, my volunteer, came, and we had a nice chat about all kinds of things. I had accidentally told Tim to come at the same time, so he stopped by and arranged to come tomorrow instead. And on Friday Laura and Dorothy are coming for a visit.

I find myself saying so many of the things my Dad used to say in his final months--he used to talk about feeling weary, and now I know just what he meant. Everything, even the most mundane activity, like going to the bathroom, becomes a major production. When someone would point out some nice upcoming activity he would say "hallelujah" or "whoop-de-doo," hating to be diverted with something that felt so minor in the grand scheme of things. And although he was eighty four when he died, and I'm not quite sixty five (my birthday is October 30th), I know just what he meant when he would say, "I've lived too long." I always planned to live to a ripe old age, but that was only if it was an active, busy life--the life I used to lead, the life I loved.

Monday, October 5, 2009

A busy weekend

As scheduled, the guy (Eric) showed up promptly at one on Saturday to do the filming, and this time there was no construction noise. It took him about half an hour to get all his equipment set up, and then he filmed for about two hours (although I know only a few minutes will make it into the final documentary). He is preparing this for PBS, on the disability rights' movement generally, but he's very aware that psychiatric disabilities need to be included. It hasn't yet been determined which PBS program it will be shown on, but at this point he thinks they are leaning toward "American Experience"'; unfortunately for me, not till some time in 2010. Ann was sitting here watching, and occasionally passed him a note with a good question to ask. Eric found out about me (and Dan) through Fred Fay (, an amazing disability activist who lives nearby (Concord, Massachusetts) and who does an incredible amount of work from his bed despite being almost totally paralyzed.

On Sunday, I watched the Patriots' game on TV (the Giant game was not shown)--it was a good day for football, as both the Patriots and the Giants won. The Giants have now started their season with four straight wins and no losses. I hope they will be on TV next Sunday, as they will not be playing opposite the Patriots.

Later in the evening David Oaks called--he was staying in a motel very near here, but he managed to get quite lost trying to follow Googlemaps directions (which I find vastly inferior to Mapquest--when we went to Hopkinton last week Googlemaps had us turn onto a certain route number but didn't specify north or south!). However, he called several times and I was able to guide him here. We had a nice talk--it's always good to get away from focusing on my illness and talk about the state of the movement and what we need to do to get our issues out there in the public. David is still (quite justifiably) furious about how NBC misled him with the program they did which (despite their promises) "balanced" the story with one about a "psychotic killer" who murdered his mother after going off his medication.

On Sunday evening we went to Dan's for a small dinner party with Dan and Tish (his wife), David, Cathy Levin, Deborah Delman, and a few other people. I got very tired climbing the front stairs to Dan's house, and had to sit and rest for awhile before going into the dining room. In the middle of dinner I got too tired to sit and had to go lie down on the couch, and fell asleep for awhile. But I got up for dessert--three different desserts. One of the women had brought an Iranian pudding flavored with rosewater. Marty and I had brought half of the Junior's cheesecake he surprised me with the other day. And Cathy, who had ascertained from me that my favorite result was "anything chocolate" had brought a fabulous chocolate mousse cake. Of course, I had to have some of all three!

One thing I find very frustrating is that even though people can see how frail I am they insist on talking about how I am going to get better and live for a long time. I'm the only one, it sometimes seems, who is frankly facing the fact that I am dying. Marty says that it's an indication of how much people love me--that they want me to be around for a while and can't imagine me not being here.

Donna was here for the weekend and she and Marty and Judy worked on setting up a scheduling system so there will be people here only when we need them. I'm beginning to have to keep a close eye on my money and my biggest expense right now is PCAs. When we got back from Dan's Marty took Donna home and Julie came downstairs to sit with me. We talked some more about the money situation and she made very clear that her main concern is for me and that I not spend any money I don't need to. This feels really good as I don't feel as able to protect my own interests as I should, so I really do need her to be doing this for me. After she had been here for awhile I fell asleep and she went upstairs; I slept for awhile and came awake just as Marty arrived home, so I had a mango bar and we talked for awhile and then I fell asleep again and slept all night. The increase in amitriptyline really seems to be doing the job!

One thing I forgot to write about last week is the beautiful silver flower pin Laura gave me when she visited. After September 11, 2001, when she and I were stranded in Budapest, one thing we did to try to keep our heads on straight was a lot of shopping, and we discovered a shared love of jewelry. One of the things I bought was a silver pin shaped like a daffodil, which, unfortunately, I lost when I went to Australia a few years ago. I've done some Web searching trying to find something similar, but have never been able to, but Laura found a pin in a very similar style shaped like a dogwood, which is not only beautiful, but has such great symbolic value.

Nancy is here now, and I'm trying to get up the energy to take a shower.

Friday, October 2, 2009

A sleepy day

Yesterday, Lauren upped my amitriptyline from 30 to 40 milligrams, to see if it would help me sleep, and not only did I get a good night's sleep, but I've been drifting in and out of sleep all day. Feeling as weak and out of it as I do, this is just as good a way to pass the time as any.

I had an appointment with a film crew who are making a documentary for PBS about the disability rights movement, but when they showed up at one o'clock they decided they couldn't film because of the construction noise from the house across the street that is being remodeled. They went to talk to the workmen, who said that they wouldn't be working tomorrow, so it has been rescheduled to be shot then. Talking about this stuff always energizes me, so I'm looking forward to it. And on Sunday we're scheduled to go to Dan's for a small dinner party--David Oaks will be in town--and if I'm not feeling strong enough to get there it will be moved here.

But today I just feel very blue and useless and sick and tired of going on and on like this. My head hurts, I'm weak, it's hard to breathe, and I just go from the bed to the chair and there just doesn't seem to be any point to it any more.

Marty surprised me with a cheesecake he had mail ordered from Junior's in Brooklyn ( --the real New York cheesecake we're always talking about. We're trying to decide whether to bring it on Sunday or just eat it all ourselves! The only pleasure I seem to find these days is in eating all kinds of fattening goodies.

Thursday, October 1, 2009

I haven't felt much like writing

I haven't actually felt like doing much of anything. I'm tired and weak and everything is such an effort. My physical condition continues to decline, and I just don't understand why I'm hanging on here, feeling so lousy and miserable.

Last night was one of those nights when I just didn't want to go to sleep, and I was watching TV and puttering around on the computer until after four. So naturally today I was really out of it, and was dozing through a lot of the afternoon.

It's a bit after eleven now and I'm going to put out the light in a few minutes and see if I can sleep. Earlier today, Marty, Julie, and I had a difficult discussion with Joan, the interim social worker, about money and the future and Marty's plans. I know that Julie wants him to move out within some reasonable time after I die, so she can rent the apartment, and this makes him feel disrespected and unappreciated. Although I appeared to be asleep during much of this conversation, I was actually following it, and felt very much put in the middle and being tugged in opposite directions. I just want everyone to get along and to recapture that peaceful feeling I had a few weeks ago when I thought things were reaching the end point.

I can see only negatives in continuing to live--using up my money, creating more tension between Marty and Julie, and experiencing physical and emotional misery.