Thursday, July 31, 2008

visit to the specialist

Yesterday John saw a Parkinson's specialist at Medical University of South Carolina, Dr. Bergmann. In our last visit, he said he wanted neuropsychological testing before he saw John again. John had that testing at the end of May, and I was upset when the psychologist presented the results as showing that John was not significantly impaired.

Dr. Bergmann viewed the test results quite differently. He said that a 37 point difference between verbal and performance IQ was not something you would see in normal Parkinson's. He said the block design test is the canary in the coal mine for Lewy Body Disease, and that was John's lowest score. He also thought John's 40th percentile on letter and category fluency was signficant.

He increased John's sinemet (to one 100/25 four times a day) to help his increasing Parkinson's symptoms but told us to be careful about dopamine discontrol syndrome and said that punding is particularly characteristic of Sinemet. He said to John that he needs to understand that one of the symptoms of the disease is lack of insight and that he needs to trust me.

Dr. Bergman didn't increase the Aricept above the 5 mg. John is taking. Dr. Bergman said that Aricept tends to makes the Parkinson's symptoms worse so he keeps the dose low, and that its positive cognitive effect builds up gradually over several months.

quick update

I drove 4 hours each way to take John to his doctor's appointment yesterday. We actually got home at a decent hour but I spent the evening trying work out tickets for Christmastime with frequent flyer miles. I thought I had it, but in the end it didn't work--very frustrating.

The Parkinson's specialist looked at the neuropsych testing results and he said of John's lowest score: "This test is the canary in the coal mine for Lewy Body." He told John he needs to understand that his judgement is impaired and trust me. I'll tell the story with more details this evening.

Tuesday, July 29, 2008

house renovations

I sent out 5 or six emails the end of last week looking for leads about house renovation. So far one call, and it is an interesting one from a designer. The man doesn't have particular experience with home design for disabled persons (though he said he had worked with such issues in institutions) but he said he has 50 years experience in design, contracting, architecture, and engineering (he is now semi-retired). I asked him to define what he would do for us and he said he would want to examine the house carefully and take measurements, discuss with us in detail what we wanted, including explaining our alternatives for different cost and quality, and then produce a design for us. Once we have the design, if we wanted his help with finding contractors, etc., he would give us a proposal and we could choose whether we wanted to contract with him for that. I asked him how much having him do a design would cost, and he said $500 to $800. That's worth it just for what we will learn, whether we use his design or not.

John liked my description--he felt that because this man wouldn't be trying to sell us something he would be able to tell us whether the house is really suitable for what I'm thinking we could do with it. So finally I'm making progress. Though meanwhile the roof of the house we live in how is leaking, when I thought I had solved that problem.


When we moved to our current house, we were able to manage a 15 year mortgage. And now we get the reward. I just set up a home equity line of credit, because I don't want to take money out of the stock market right now to fill gaps and because we are going to do at least some, maybe a lot of renovation on the other house we own. The bank that set up the line of credit wanted to roll over the old mortgage into the line of credit (rather than set up the line of credit as a second mortgage). It turns out that the amount remaining to be paid in the old mortgage was $5,000. So I'm celebrating that we have paid off our mortgage. That isn't strictly true--I have set up a monthly payment on the line of credit. But that monthly payment is a lot more than the minimum payment due and still half what our mortgage used to be.

To me, the remarkable thing about the process is that by paying a monthly amount that was comparable to rent (at least in this town where house prices are low and rents are high), we ended up with the whole value of the house as wealth. It is a lot of money that we didn't have 15 years ago and now we have. And I am very thankful for the flexibility that gives us right now.

Monday, July 28, 2008

cutting back medication

A few weeks ago the sleep doctor told John to cut down on the Imipramine he had been taking to help him sleep. John said he was going to put off doing so because he was afraid he wouldn't be able to sleep. Today when he looked at my notes for the Parkinson's specialist on Wednesday, he said he had cut his dose in a half a week or so ago and then a few days ago stopped taking it altogether. He thinks he is feeling less stress so sleep is now less of a problem. He has also cut back one of the two medications he was taking for prostate enlargement. He is still taking six prescription medications, but he has dropped two and reduced one. It is all a good sign.

Sunday, July 27, 2008

asking for what I need

I've been pushing John to pay more attention to feelings, both his and mine. Somehow it feels right to push right now, even though I don't think it is going to work. Instead, I'm beginning to see a middle ground that we can actually get to, at least for now.

I'm going to need to learn to ask for what I need, which has always been a weakness of mine.

Here is an example. We were driving the other day and I noticed an ironman sticker on the car ahead of me. I said if I ever do an ironman (long triathlon) I am going to be very tempted to get a small tattoo of the ironman symbol. John said "I hope you won't, that would be such a bad example for the kids." I was silent for a while and then said "I am a person too." He wanted me to explain that and then said I had the right to do what I wanted but he still hoped I wouldn't because he thought it would be such a terrible example for the kids. I'm thinking that instead I could have said: "See my feelings--I'm feeling sad that I probably won't ever be able to live my dream."

If I'm willing to tell John exactly what to do, he will be able to do something to meet my needs for longer. That is better than nothing. A wise priest once told me that where we can hope to get (though it is very hard) is to learn to enjoy the little bit that a limited person who is close to us can give us, instead of resenting what they can't give us.

Saturday, July 26, 2008


This is an example of how I get tangled up trying to figure out the answer when there isn't any. The question is whether we should replace our queen bed with twin beds so I don't feel so endangered at night by the REM sleep behavior disorder. But would we get rid of our queen bed?

We have one of those air adjustable beds (a sleep number bed), and I'm fed up with it because my side leaks sometimes (I think the valve sometimes closes properly and sometimes doesn't). I haven't faced calling up the store to get someone to come fix it. It may be out of warranty but it is possible to replace individual parts so it can be fixed to good as new for a fairly low cost. But the problem is only occasional, so I am afraid if they come to fix it it work fine that day and they won't be able to tell what is wrong. Because of his acid reflux and shoulder problems, John has the head of the bed elevated, which I hate because it puts a weird bend in the bed. Will they say that is the problem?

I want to move in a year, and have separate bedrooms then. If we do that do I want to keep the queen bed or have something smaller? My bedroom in the house I want to move back to is fairly crowded with a queen bed. When we move we will have an extra good quality twin bed with trundle. For me to have just a twin bed seems a bit odd, though I really don't need more room (no dogs). But it seems silly to buy a double and have to buy all new sheets.

When we move would we buy John a twin or double air adjustable bed? It has been helpful with his shoulder problems and it seems to me that as it gets harder for him to move around in bed it would be a mistake for him to have the queen bed. Or should he have the queen bed when we move, so it feels like I will still join him there sometimes, and then some day if needed it will be replaced by a hospital bed? Or do we just give him the extra twin, since part of the plan is to get him a really comfortable recliner since he already falls asleep in a chair and spends most of the night there.

It would be possible to not take on the larger issues but just swap our queen bed with the twins in the basement guest room (one is a trundle but pops up and is fairly sturdy). But even that would be a lot of work and it won't help the problem of John waking me up by talking or yelling.

One of my strengths is looking ahead and considering all the ramifications of various possible decisions. But in my present situation I get paralyzed when I do that. Then I'm afraid people will think I'm making a mess of things by thinking too much.

Friday, July 25, 2008

REM sleep behavior disorder

John does not have hallucinations or paranoia (yet), but the prospect of psychosis is very real to me because I really do feel endangered in bed at night by the REM sleep behavior disorder. A few nights ago I woke up just before he hit out at me, though he connected with my body pillow, not with me. He doesn't wake up, doesn't remember a thing in the morning.

The sleep doctor is going to put him on Klonopin, which is supposed to help, but only after he has a sleep study, which couldn't be scheduled until the beginning of September. If that doesn't work I think it will be time to just sleep in separate rooms. If we were going to bed at the same time I would do it now, but it doesn't seem as necessary when we usually don't overlap in bed more than two hours (he falls asleep in a chair, while I get up early).

random triathlon picture

Look at this picture of Ironman Lake Placid. There are a lot of people on that swim course. It rained the whole day.

Thursday, July 24, 2008


The comments on yesterdays post have me focusing back to the issue of whether we should move, which I put aside before we went away and haven't gotten back to except to ask some questions of the realtor who manages the other house.

Our current house has living room/kitchen/family room/bedrooms on the main level plus a big finished basement, in which John has an office. But he comes in and puts everything down in the kitchen and family room. I've been trying for a year to get him to bring some order to his stuff, with only brief success. So part of my wanting to move is to force us to organize and simplify and get rid of some of our excess stuff.

The other house is the first house we lived in here. We still own it, but it is rented to students until May 9, 2009. It has an attic with a bedroom and bath, a main floor with kitchen, den, dining room, living room, one bedroom and bath, and a basement with three finished rooms and one unfinished room.

It is the basement level that I would like to make into a handicapped accessible space for John. The basement is above ground on one end, walk in with no steps from a carport (under a screened porch). The layout is two long rooms side by side with windows and then a square central room with the bathroom on one side of it plus a separate walk-in shower and a sink on the other (at one point it was an apartment with its own kitchen). The stairs up to the main level are in the central room. The floor plan drawing below is from when I first moved there and I suspect is not accurate, but it gives a sense.

I'm imagining that the long room with the best windows (bottom right on the plan) would be John's sitting room, with a really comfortable recliner, TV, computer, and probably a daybed set up to serve also as a sofa. The central room would have a kitchen/work table and lots of shelves and a small refrigerator and microwave, maybe a bed. The other long room would be our son's bedroom when he is home from college.

I start thinking about it and I get daunted. Moving would be so much work. I might make a handicapped accessible space for John and then end up not keeping him at home. But I do know that whenever the time comes when I am alone I don't want to be in the current house, I want to be in the old house. And I would really like to move while John can help. He was initally dubious about the idea because he remembers the finished basement of the old house as not very nice, but he has become more positive.

I tend to focus on trying to find an architect or contractor because that feels like the easiest first step. I want to have someone look at the space this summer and give me an opinion about whether it will work well or not. Both houses are paid off and I just got a home equity line of credit on the current house so we have some financial flexibility.

Wednesday, July 23, 2008

Alzheimer's support group

I went to my first Alzheimer's support group today. There actually is a local Lewy Body support group, but the first meeting I went to only had three people so it wasn't a place where I could get ideas from people with more experience of local resources. The group I went to today was about 15 people, a good size, but an odd mix with as many new people and and people still coming after their loved one had died as there were people in the middle of the process.

I did find the conversation useful--much of it about strategies for how to redirect someone. No one had any leads for for me on home renovation. I do have a couple of leads I have already been given that I haven't tracked down yet, particularly that my university has a Center for Engaged Aging (sounds like a tongue twister to me).

I think today's group would be useful if I were willing to make the commitment to go every month, but a weekday afternoon isn't an easy time for me. I'm going to try an evening Alzheimer's group in the next town over, which I should be able to get to more regularly. I'm spoiled by the Yahoo LBD spouses group, which is such a wise and frank group of people who have become experts the hard way.

Tuesday, July 22, 2008

social security disability

Yesterday was actually a productive day. I invited a new colleague to supper and my son got home from Mexico in the evening, so I stayed busy until bedtime.

I want to summarize what I have learned so far about Social Security Disability, because I had trouble finding the information when I needed it.

The biggest mistake we made is that John didn't apply for Social Security right away. He was advised to wait until his disability retirement from his job had a chance to go through. That was a mistake because John is 62 and so eligible for retirement benefits. Disability benefits are based on the date you become disabled, but retirement benefits start with the month after you file. So if John had filed in May he could have received benefits starting with June (received in July) instead of August (received in September). And our kids would have received benefits for those two months as well (under 18 or 18 and not yet finished high school).

John filed for disability at the same time he filed for retirement. He gets retirement right away, and if he is approved for disability, he will then get a check for the difference. The person who took the application said that we should hear whether the disability application is approved in about 4 months. I know that most people are turned down and have to appeal, but the person who we talked to first said that it isn't as hard to get disability when you are close to retirement age so we might be lucky.

The disability form for Social Security was actually simpler than the one for John's job as a state employee. We listed the diagnoses as Parkinson's and Dementia with Lewy Bodies. The person taking John's application was very happy with the list of medications we brought on a separate sheet (which I had prepared for doctors) including not only amount and frequency but also which doctor prescribed and for what problem. I brought the Lewy Body Dementia brochure from the LBD Association and that was also well received--the person taking the application said that would save the people evaluating the claim some research.

I had been advised that filing online could be faster, but we liked going to the office. We did not experience long waits and the person taking the application helped us understand the options and what would happen when. He had actually taken a course from John about about 15 years ago and remembered him. John was having a good day, which I'm not sure was too the good, but I did point out that one of the characteristics of Lewy Body Dementia is that the impairment is variable. The person taking the application didn't ask questions about John's health, just about our financial situation. He had access to an amazing data base in which he could even look up John's military service (they boost the income credit for years in the military).

All the people we dealth with were friendly and seemed to be trying to be helpful, which was quite different from what I had expected.

Sunday, July 20, 2008

Race day

Here's where I was at 6 am today:

What you are seeing is the area where the athletes are setting up their bikes and gear, with the pool behind. My results were: swim 400 meters 11 minutes, transition from swim to bike 2 minutes, bike 11.6 miles 49 minutes, transition from bike to run 2 minutes, run 5 kilometers 46 minutes for a total time of 01:51:39. I was 103rd out of 123 women and 5th out of 5 among women 50-54.

I enjoyed myself a great deal. I had a peaceful night alone in a hotel room. And I spent a morning in which I never thought once about how John's illness is changing our lives. I also wasn't slower than in a similar race in May, which I feared I would be.

Things were fine when I got home, though John doesn't get anything done while I am away. He is now filling out the Social Security Disability form.

Race Report: Asheville Triathlon

Short form:
103 out of 123 women
swim 400 meters 00:11:26
T1 00:02:32
bike 11.6 miles 00:49:34
T2 00:01:55
run 5k 00:46:13
total time 01:51:39

Long form:
I decided to do the Asheville Triathlon because a friend was looking for a triathlon to do and it was the one that fit both of our schedules. And it is a lot closer than most of the ones in the South Carolina series. Asheville is a new triathlon in the Set Up Events Tri-Sports Triathlon Development Series--they have two series in North Carolina and this is the less competitive one.

I took much of the month of June off from training because of travel, and generally my training has been far from what it was last year. My husband's diagnosis with Parkinson's disease and Lewy Body Dementia has shifted a significant part of my time and energy, and the stress of facing that future has caused weight gain and higher blood sugar. I do keep pretty faithful to a little over an hour of exercise almost every day, if only because I need it to manage stress and fight depression, and I'm taking a herbal supplement that has helped the stress reactions.

So I went to the race with low expectations, but looking forward to the chance to just focus on a race. My friend and her family spent the day before the race in Asheville; I met her at the hotel Saturday evening to go to the pre-race meeting and drive the bike course. It was not encouraging--at the meeting they kept promising traffic control at several difficult intersections and when we drove the bike course we got lost and the roads seemed very narrow and windy.

I enjoyed being in a hotel room alone, but woke up a bit early. We had breakfast in my hotel room and then headed to the race location about 5:30. It was dark still but we had lots of time to set up. I tested out my bike but it was too chilly to do a swim warmup.

We were in the bathroom when we realized we needed to hurry because transition would close for the race start at 7 am. I have to leave my glasses in transition and put on my prescription googles in order to be able to see anything. Actually, we enjoyed watching the fastest swimmers and didn't have too long to wait, as we went off at 7:15 and 7:16.

I prefer lake swims to pool swims but it was nice to be in an outdoor pool at least. I had forgotten that because it was a seeded start rather than a wave start we wouldn't get swim caps, and I didn't bring one. I've come to prefer swimming with a cap, but once I started swimming I didn't notice my hair in my face, I just tried to keep up my pace and keep aware of people around me at the same time. I passed one or two people, was passed by more. I've only swum in 50 meter pools twice, both for races, and so it doesn't feel very natural.

The bike route was much hillier than I expected (my GPS isn't very reliable for elevation but it says about 900 feet cumulative climb in 11 miles). I saw people walking their bikes on several hills. I wasn't going much faster than they were up the last bad hill, but I rode it. I had great fun because with the wider range of people in this race and a start seeded by swim times I passed lots of people. One man and I passed back and forth five or six times. He was a master clydesdale but I was still faster downhill--I guess my small aerobars give me that much advantage. He was stronger than I was uphill but he walked on that last bad hill. There were some tight downhill turns but the roads were lovely and empty and while I braked a little on a few of them I felt fast and confident.

I haven't gotten any faster on the run, but it wasn't as bad as I feared from how my training times have slipped. I had noticed a woman in my age group I thought I could beat and she passed me on the run, which was discouraging. But it did help me keep my pace up to try not to let her and the man from the bike get away from me, though I didn't succeed. The wonderful thing about the run course was that it was almost entirely shaded, and it was still fairly cool. I did have a sprint left for the finish.

I stiffened up fast after the race, which made me feel that I had put in a good effort. My average heart rate was 87% on the bike and 83% on the run. I'm happy about it, if only because for a whole half a day I didn't think about the issues that face me and my husband.

Saturday, July 19, 2008

quick note

I don't have much time to write--I had a new colleage and her husband to lunch and I need to leave shortly for Asheville. I'm doing a 7 am race tomorrow two hours away so I am going up the night before.

John and I enjoyed picking blueberries together this morning. It was hot and he sweats a lot less than he used to, but he felt it isn't a problem so long as he still sweats some. I picked blackberries as well (there weren't many left so it required something close to crawling under the bushes) and we had a delicious blackberry cobbler.

John did some straightening up before our guests came but didn't deal with a pile of his things I had particularly asked him to move. I suspect figuring out where they should go is daunting. He would rather we not invite people over until he can get his stuff cleaned up but I've decided to give up waiting for that. I think we need to experiment more with whether a student could help him. He says no because he has to decide where each thing goes. But if I helped him the way I sometimes help our kids I would hold up each thing and say "what do you want to do with this?" I have little patience for that.

Friday, July 18, 2008

simplify, simplify

A couple of years ago I went to the annual gathering of the Thoreau Society when the theme was "Simplify, simplify." They were selling t-shirts that said "What would Thoreau do?" It crystalized my desire to simplify my life, but I haven't made very much progress.

I spent an hour or two today going through boxes of John's mail (a longstanding problem) trying to make sure that we found all of his IRA accounts to roll over into an annuity. I found four old accounts in addition to the current retirement savings account. That all five will be consolidated into one account feels to me like a real achievement in making things simpler. The discouraging thing is seeing how much better our situation would be if he had invested his money differently, but that reflects decisions he made 20 years ago and never revisited, not recent problems. He used to listen to the business news and have strong opinions, but he didn't act on them.

There is one other account that can't be consolidated because it isn't pre-tax money. I asked John what he wanted to do with that account and suggested several options, but he didn't show interest in any of them. It startles me to have him not have an opinion.

polishing silver

Today was one of those days. I got in a short bike ride in the morning to test out my adjusted bike before a race on Sunday. I spent a good part of the morning in the office--met with a student and agreed to supervise his writing a paper in the next two weeks.

This afternoon I went through my husband's old mail to try to make sure we get all his IRA accounts rolled over into an annuity. Then I polished the rest of my grandmother's silverplate coffee set that has been on a shelf looking black for years. My daughter had volunteered to help me last week but we got only half the job done then. I put the coffee set away in a silvercloth bag in hopes of never to have to polish it again. I hope my kids actually will someday want this stuff I am saving for them.

I'm not sure the silver should have been my highest priority, but it is one of those jobs I have been meaning to do for years and it is done. I wish in the summer I could do that kind of thing without feeling guilty that I really should be doing something else (working on an article).

Thursday, July 17, 2008


John got word today that he has been approved for disability retirement from his job. That gets him a higher benefit than regular retirement would have, though with only 18 years in the job it isn't great. Now that is approved we started the process of applying for Social Security disability. We went down to the Social Security office, and amazingly didn't have to wait at all to do the preliminary steps. We have an appointment Monday to do the final application. And while disability usually takes a long time, since John is 62 he will apply both for regular retirement and for disability. He will get the regular retirement right away and then a lump sum for the difference if/when the disability comes through.

We knew our daughter would get benefits until she is 18 if John got disability, but we got further good news on that. We should get those promptly because Social Security benefits for a dependent child come with regular retirement as well as with disability. I had no idea that children could get benefits when a parent retires; I guess not very many people retire with children under the age of 18. In addition, even though our son just turned 18 he will get a year of benefits because he has one more year of high school.

We also met today with the financial planner we have been working with, and he had found John an annuity based on his diagnosis (called an impaired risk annuity) that pays 10% guaranteed for however long he lives. We will consolidate his tax deferred retirement savings and various small IRA accounts he has accumulated into that annuity.

I was worried about our financial situation this year because I thought things would take longer to kick in. We actually are in surprising good shape for the next three years, as our daughter will get Social Security benefits for three years and John has a private disability insurance policy that will pay until he turns 65. When his expenses go up after that we will be in a more difficult position as he does not have long-term care insurance.


I brought up feminism and caregiving with my bicycling partner this morning and she could relate because she is a stay-at-home mom. She asked me how I define feminism and I said feminism is about empowering women (somehow I didn't want to define it as about self-realization for women). She spoke of how her mother fought for feminism; my friend is of a younger generation and didn't have to fight. I said she had choices and she used them--that is what her mother fought for.

In effect I was defining feminism as women having choices. Then I realized that is what John sees as my different culture--my expecting and wanting to have choices instead of accepting what happens as just the way it is. Life hits us with plenty of situations where we don't have any choice, but we can work towards a society that maximizes the choices people have. Thinking about it that way gives me more courage to stand up for my perspective--it is a feminist principle that people should have choices, though it isn't always possible. I don't have a choice, but I'm entitled to feel anger about that.

Wednesday, July 16, 2008

talking about my anger

John and I did meet together with the therapist today. John and I had talked about it beforehand, and I said I would try to let out my feelings in levels so that he could say stop when he couldn't take any more. He thought it would work best for him to just listen, not respond.

I talked about:
  1. I find the current situation very confusing--I don't feel confident in my own evaluation of what John can do and what I should do, much less how much it is progressing.
  2. I feel burdened by having to take over responsibility for that he used to do, plus going with him to his doctor's appointments and reminding him of things. I feel like it is more than I can manage.
  3. I feel trapped--I'm not likely to get the deeper relationship I wanted to build but now there is no way out.
  4. I am angry that the good things I hoped for in these 15 years before retirement have to be put aside to care for him.
  5. I feel that caregiving isn't the person I am or want to be.

John said he had a sense of those feelings in me but it had a lot more impact to hear it. He said that he and I come from different worlds (lower-middle-class Texas and old New England) and we have had enough in common to bridge that but now the different worlds are showing. He said in the world he comes from you make the best of what is. I think he was saying that my anger at the situation, my feeling that "I don't want to be here" was foreign to him.

He did say he never complained about taking care of me when I went through an intense healing journey. That is true, and he took over all the cooking for several years. But I still kept up most of my share of responsibilities, particularly the ones he wasn't good at. I was never hospitalized, never non-functional for more than a few hours or a day. This is going to be much worse.

He has been quiet since; at dinner we talked about everyday things. Sometimes he gets upset about something I've said not when it happens but late at night, so I'm still worried about what his reactions may be. I feel better to have it out in the open.

Tuesday, July 15, 2008

Letting out my feelings

In Life in the Balance Dr. Grayboys writes in general terms about how he and his wife were open about their feelings about the disease to each other and she let out her anger a him in a safe therapy setting. My therapist suggests I might do that with John, even the wild irrational feelings that tend to come out as that he is ruining my life.

I'm afraid of several possible outcomes:
  • he might just be overwhelmed and confused and hurt--it might feel like I had taken candy from a baby
  • it might make him face the feelings he is avoiding facing and send him into deep depression
  • it might drive him to paranoia

I worry particularly about that last alternative. He has never been someone who went very deeply into his own feelings and when I suggest he is avoiding certain issues (such as not responding when I say I am depressed) he feels I am criticizing him. He thinks I'm exaggerating how bad things are and he finds ways to make it my issue rather than his--for example, he says I take things over that he could still do because I am too sensitive about mistakes.

John admits he is having cognitive problems and he doesn't resist my taking things over. I'm lucky in that, and I don't want to endanger a relatively positive pattern by wanting to be open about my feelings.

I don't think there is a right answer; in the end I will have to trust my intuition.

Monday, July 14, 2008

urology appointment

Early last winter, when John complained about urinary frequency, I was surprised by how willing he was to go to a doctor and do something about it. The diagnosis was benign prostate enlargement, and Flomax didn't help. So the urologist recommended surgery, which John had at the end of February. The surgery wiped him out terribly--it took a week before he was really functional and longer than that for him to not need a catheter. Looking back on it, we were probably seeing a Lewy Body reaction to anesthesia.

The discouraging thing about the whole process was that once the immediate healing from the surgery was over, John wasn't any better off than he had been before. The doctor suggested more surgery but John didn't like that idea at all. So the doctor ordered several further tests and then tried another medication, Proscar, and an office procedure to stretch the area where scarring from the surgery was causing continued problems. The combination worked quite well and John now feels his situation is acceptable. He wants to stay on Proscar because it has stopped his hair loss (a lower dose is approved under another name as a treatment for hair loss).

All the difficulties of the prostate surgery coming right at the same time as John was diagnosed with Parkinson's disease has been a very stressful situation. So it was very nice today to have the urologist tell John to come back in 6 months because his situation is now satisfactory and hopefully stable.

The bad news was a call from John's general practitioner's office asking him to make an appointment to discuss some test results. The two tests were of levels of testosterone and vitamin B12 (the second actually ordered by the neurologist). So another doctor's appointment just when I thought that the amount of time we spend going to doctor's appointments was finally going to decline.

Sunday, July 13, 2008


I drove our daughter to a summer class at Duke today--left at 9:30 am, got back at 8:30 pm. It didn't seem like as long a day of driving as it was; she and I talked to whole way up and I had downloaded several new albums to listen to on the way back. I tried to explain the whole family financial situation to her and she seemed reassured to know. My father gave the kids college funds when they were born which have done very well, so I'm not worried about our new situation limiting them.

I called John from the road to tell him when I would get home, and I asked him if he had gone to church. I didn't particularly expect it--it is something which has always been more my thing than his--but he likes the Sunday evening service we have been going to recently. He said he hadn't been able to motivate himself. I thought that was interesting, that he saw it as not being able to motivate himself. That applies, I think, to doing more exercise--he knows it is a good thing but needs structure to motivate him. He says he does want to try Silver Sneakers, so maybe he and I will go sign up at the Recreation Center tomorrow after his urologist appointment. I wish so much for him to have motivation to do as much as he can, but the disease is taking that away.

Friday, July 11, 2008

Sleep Doctor

John had an appointment with the sleep doctor today. A year and a half ago I got John to go to this sleep doctor and he had a sleep study which showed very mild sleep apnea, not serious enough to treat. The doctor wanted to do another sleep study in a year, but this visit was more motivated by the Parkinson's specialist we saw in April, who wanted John off the Imiprimine he has taken for sleep for many years because it makes the REM Sleep Behavior Disorder worse. John has always had trouble sleeping, and the combination of Clonidine and Imiprimine is the first solution that has worked for him long term. The sleep doctor wanted a new sleep study before changing the medication and that can't be scheduled until early September. He said he would then try John on Klonopin and assured John that that would help him get to sleep.

With the specialist in April, John said he was willing to try to change his terrible sleep patterns, but now he has decided he is too set in his ways. He falls asleep in a chair around midnight watching TV or reading or using his computer and doesn't come to bed until sometime between 3 and 5 am. He also drinks a half a bottle of wine about three nights a week, starting about 10 pm. I hadn't expected him to change his ways--my thought instead is to get him a really comfortable recliner so that he sleeps in his chair in a more comfortable position. The wine is clearly problematic but it is his major hobby so he isn't going to give it up. He drinks late rather than with dinner because I don't drink and am somewhat uncomfortable when he does (I think it makes him less aware of other people's needs and feelings). If the doctor had pushed the point I might have volunteered that John should have his wine with dinner instead, though I wouldn't have liked that. The sleep doctor did raise the issue of alcohol disrupting sleep but he backed off when John asserted that he doesn't see any difference in his sleep between nights when he drinks and when he doesn't.

We see the Parkinson's specialist at the end of July so there will be chance to run this all by him before making any changes. I don't have strong feelings about what needs to happen. Because of the REM Sleep Behavior Disorder I'm just as glad not to overlap in the bed very much with John (I get up at 5 am to swim two days a week, between 6 and 6:30 other days). When John does wake me up crying out and thrashing in his sleep I just move to another room.

Thursday, July 10, 2008

exercise class

John went today to an introduction to a Silver Sneakers exercise program at our local community recreation center. He seems more interested in the question of whether his insurance would pay for it than in what the courses were like--he doesn't seem to have come to any conclusion about whether a group exercise class would work for him. They were supposed to do a demonstration class but unfortunately they didn't. They have a stretch and strength class twice a week, which sounds like what he needs. I wouldn't have thought he would have considered a group exercise class, but he seems willing to try it out.

When we went to a conference on Parkinson's disease one of the doctors said that the thing that will help most is exercise. I don't know what structure will work to get John to do exercises (in addition to his walking) when he finishes his month of physical therapy, but I think he needs some structure. I've done a little bit of looking into finding him a personal trainer, but maybe a class would be better.

Wednesday, July 09, 2008

depression and supplements

I am not prone to depression. I tend to pop out of it after a few days, and I have a lot of experience working through painful feelings. But facing the future with John's diagnosis has been tough. A week and a half ago I found myself so discouraged that I wasn't finding any resolution to the pain and grief that I thought maybe I was ready to try antidepressants. That is a strong statement for me--I have never taken antidepresssants in my life and I try to avoid medication, for one thing because I am very sensitive to mental side effects (when I had chicken pox as an adult the doctor tried to give me medicine to help the itching and one antihistamine caused me to cry for three hours).

That day I happened to read a blog in which someone wrote of a herbal remedy that had helped her in a similar circumstance. My first question was whether it was safe to take. A mainstream site on supplements doesn't have any serious safety concerns. And the web site for the company gave me the impression that they weren't likely to be buying contaminated ingredients from China. So I figured I would give something called Serenity formula a try--if it worked by the placebo effect that would be best of all because I wouldn't be messing with my body but I would be feeling better.

I've been taking it for four days now. My initial impression was that it took the panicky edge off the emotional pain I have been feeling. It didn't blunt my feelings too much, I was able to do good work in my therapy session this week, and so I can't separate whether that or the supplement is making me continue to feel better. What I am impressed by is that my morning fasting blood glucose has been going steadily down. I just tested it a few times before I started the supplement but both times it was over 120, which is terrible for me. Since I started taking the supplement it has been lower each morning--this morning it was down to about 105, which I consider the high end of ok. I believe the high fasting blood glucose is a stress reaction and the downward trend suggests that this supplement really is reducing my physical stress reaction. I also notice I have fewer carbohydrate cravings.

All that may just be that I have kept up my exercise and had a chance to recover from my travels. But it is good news in any case. After a few weeks I may try not taking the supplement and see if my numbers go back up; that would be more solid evidence.

I don't want to discourage anyone who is taking or thinking about taking anti-depressants; they make all the difference for some people. And I'm no expert in alternative medicine. But this is a new step for me in what I can do with the philosophy: "My body, my science experiment," and I am pleased with how it is working for me.

Tuesday, July 08, 2008


I just heard from our son, who left Saturday for a two-week study abroad program in Mexico. Getting our son signed up for this program was one of the things this past spring that made me realize that there was something wrong with John. The program is run by the community college where he taught, so he was finding out the details. He worked out the complications of our son taking the placement test, but he missed that there was an application form that had to be submitted.

Very kindly they let our son into the program late. I've been nervous because it is the first thing our son has done where he has been treated like a college student (he is 18 but just finished his junior year of high school), responsible for his own money and medication. He has attention deficit disorder and is not good at keeping track of things. But I heard from him today that except for car sickness on the bus he is having a great time and the family he is staying with is great.

I've told him that he is going to need to grow up quicker now because of John's illness, and that he is no longer the most forgetful one in the family. This trip going well feels like a hopeful sign that he is ready for those challenges.

I pick our daughter up this evening from a trip to see a school friend. It will be good to have her home again. She is younger but she is the resonsible one--I was glad she could get away just to have fun as well as the summer course at Duke she goes to next week.

Monday, July 07, 2008

Feminism and caregiving

Feminism saved me when I was young. I grew up with abuse from my mother and grandmother, and my reaction was not to want to be a woman. By the time I got to college, planning to major in astrophysics, my way of being was to be one of the guys. Feminism saved me from being totally male-identified--it gave me a way to accept being a woman without becoming my mother or grandmother.

As a teenager, I didn't expect that I would ever marry or have children. I married only in my early 30s, with the understanding that John and I would equally share household tasks and with a prenuptual agreement (which my lawyer now tells me will provide some protection for my assets if we need to get John onto Medicaid). So into order to find myself in this new challenge I want to think about whether there is a feminist approach to caregiving.

I did a little web searching on the topic. I may just have to track down a special issue of a journal on Fundamentals of Feminist Gerontology. The trouble is, the focus is likely to all be on daughters caring for mothers. I found one article that argues that too many studies focus on how women put their own health at risk while caregiving and asserts there should be more focus on the autonomy of older women rather than their role as caregivers. Not what I am looking for.

There is certainly need for a feminist call for change in the system to give caregivers more choices. I read a blog by a gerontological psychiatrist in England and government funding of long-term care makes a big difference. If Medicare covered long-term care for people with dementia I would be in a very different situation. Even leaving aside the issue of how to pay for it, in a rural area like the one I am in nursing home care for people with dementia is way behind best practices. I'm guessing I may end up keeping John at home because nearby facilities won't be able to handle the behavioral challenges constructively. Feminism tells us that we need social solutions to problems like caring for people with dementia, not just private solutions.

But there are other feminist issues besides having choices. Caregiving can be a way of asserting identity for minorities. For wives who are caregivers to their husbands, caregiving is an odd change in roles where we have increasing power over our husbands, want it or not. I feel that already when I go with John to a doctor's appointment and the doctor listens to me. To claim to know what is best for another person is a mix of power and burden. The issue of identity and the issue of power come together when I increasingly become the sole decisionmaker and choose to handle things my way. In a posting in an email group today, a woman wrote that she was going to ignore a doctor's advice on a particular issue because she knew more about her husband than the doctor did.

The interesting question would be what would we do if we had a choice of caregiving at home or a facility that followed the scientific best practices? Would we assert that local knowledge--our personal knowledge of what will work with our spouse--is better than standardized best practice? I think many people in the email group would. Is that because we are socialized to feel responsible for providing care? Or is it a rejection of rationalization and the scientific approach, instead claiming the value of our local knowledge and culture?

I don't know if any of this makes sense yet, but it feels like something that is important for me to explore.

Saturday, July 05, 2008


John and I talked a little today about the loss of partnership (maybe the Aricept is making a difference that we could have the conversation, though there were a couple of things he couldn't manage yesterday that made me think it wasn't). Our marriage started out very much based on sharing tasks equally, though we had gradually done some dividing on the basis of what we were good at. John still does his own laundry and takes out the trash (with reminding). We had fairly recently come to a better system for sharing cooking--we alternate weeks and when it is our week do both the cooking and the food shopping . When traveling I did all of it but now we are home he is taking his week. It takes him so long, even though he is cooking simpler things, but I really don't want to take over until I have to.

I suggested maybe he could do more of the things he can still do instead of being huffy (as he was at one point on the trip) that they should be divided equally. But when we talked about it I realized that a higher priority for me is for him to clear up his chaos in the family room and the boxes he put in space I had just cleared in the basement. It took him four days to clear his stuff off the kitchen table so I could put on a new tablecloth.

I know, I know, I should be glad he can do any of it. But I feel the loss of the partnership we had. We do have someone who comes every two weeks to clean the house, but getting picked up so she can is always a big production.

Friday, July 04, 2008

What next?

I'm very fond of the Christian folk music of David Bailey, so I signed up to get his email newsletter. Yesterday I got a newsletter in which he told the story of his cancer diagnosis and wrote:
A week after that came the long walk and the epiphany I've told so many about - the one where I yelled "why me" and God showed me a better question: "What now?" So today, 12 years later, I find I am still asking it. And while the answers are still sometimes elusive, I still enjoy asking.
That struck me, though I am trying to figure out the tone of voice of "What now?" I don't think it is "Oh no, what else is going to go wrong?" He may mean it as action: "Given that this is my situation what is the next step?" But it appeals to me in a tone of bemused curiousity that implies we are passengers on a wild ride. What unexpected thing is going to happen next?

Thursday, July 03, 2008

Doctor's appointments

Yesterday I went to my gynecologist for my annual checkup and John had a neurologist appointment. The gynecologist saw how stressed I am and wanted to put me on estrogen or an anti-depressant--she said menopause is a very vulnerable time for depression. I said let me try to handle it my way for a while longer. My A1c (a diabetes test) was up from 5.7 to 6.5--perhaps some from eating less carefully while traveling but I think mostly from stress. We agreed to schedule another appointment in three months. I fear that an antidepressant would tamp down my feeling so I wouldn't be able to work through them. But right now I can't imagine how to work through them, how I will get to deep acceptance of my situation. I am going to try a herbal supplement for stress.

We came away from John's neurologist appointment with prescriptions for three things I had decided to push for:
  • Aricept, an Alzheimer's medication that helps many people with LBD
  • A blood test of John's B12 level
  • An evaluation of his driving

John has an appointment with the Parkinson's specialist at the end of the month, but I didn't want to wait until then to start on an Alzheimer's medication. I've heard reports that at least for some people with LBD it doesn't just stabilize them but brings real improvement. It is going to take a while for me to have any sense of that, but the immediate good news is that it is not causing John stomach upset.

Wednesday, July 02, 2008

Graboys, Life in the Balance

I just read Dr. Thomas Graboys' book Life in the Balance: A Physician's Memoir of Life, Love, and Loss with Parkinson's Disease and Dementia. I liked it very much, but it is definitely a memoir--the focus is on one person's feelings, not on providing useful information.

Dr. Graboys is a cardiologist who was diagnosed with Parkinson's disease and Lewy Body Dementia in his early 60s. He writes a lot about his denial and how hard it was for him to give up his work as a doctor. He lives in a privileged world (he and his wife have a full-time housekeeper!) and had a very high opinion of himself. Some people might find that annoying in the book, but I like his honesty in admitting it and writing about how much he is losing to dementia.

I've heard some frustration about the book in the Yahoo LBD spouses group. An interview with Graboys on Good Morning America last week talked about Parkinson's, not Lewy Body Dementia. But in the book it seems to me he is quite clear about Lewy Body Dementia, and I gather he also was in an NPR interview here:

The book is certainly only about the early stages of the disease, and a fairly gentle version at that (no significant hallucinations yet). Graboys says he cannot bear to think about what it will be like when the disease progresses. He does imply that he would wish for assisted suicide at the point where he no longer can recognize the members of his family.

To some extent this book is a contradiction in terms--how can someone write about his own dementia when that dementia limits his ability to understand what is going on with him? I think he does a remarkable job of getting past that, but there are ways in which he does not understand how bad it is (and his fears have kept him from doing a lot of research on the disease). He is also a bad role model in a couple of respects, particularly that he is still driving.

What I like about the book is that it gives me a sense of what it would be like to be in John's head. I don't think John has felt all the feelings Graboys writes about but I hope John will read the book because it might give him a model to help him recognize his own feelings.

I would recommend this book to anyone who has a family member in the early stages of the disease, for that glimse of what it might feel like to be the person with LBD. It doesn't give much sense of his wife's perspective but the situation itself is gripping--his first wife died of cancer and he remarried just as he was beginning to show symptoms. The book includes letters from his children that seem to me quite open about the different feelings they have. But again it is early stages, he doesn't require their care yet. I hope in a few years his wife or one of his children will write a continuation of the story.

Tuesday, July 01, 2008

Settling back in

We got home Friday and I've been very glad of some quiet time. I tend to crash after a trip and this time it has been particularly hard to come back to our changed life with my husband's Parkinson's Disease and Lewy Body Dementia. The differences are subtle and we accomodated them well during the trip. But more burden falls on me already, and I'm scared of the future. It recently struck me that I only went into marriage with the understanding that it would be an equal partnership. And now that is quickly slipping away.

Escape fantasies

Today with my therapist I ended up trying to come up with escape fantasies. The idea is that I am feeling so trapped; it would be better if I felt I am John's caregiver because I have chosen that role.

The problem was, I couldn't even come up with a fantasy of running away that seemed at all realistic, even leaving aside how it would affect our children.

If I stayed home but stopped taking care of John, there would be consequences that would make my life worse (or at least I would lose the possibility of making things better). His getting the various disability payments would be at least slowed down (Today I found an unopened envelope in his mail from last week that had a form that was supposed to be sent in quickly). He wouldn't push to try Alzheimer's medication or be tested for B12 deficiency, either of which could lead to actual improvement.

If I ran away, left town, until I wanted to come back, there would be even more of a mess when I got back, particularly financial. My eye was caught by a 30-day retreat next summer, but I don't think that will be realistic then.

The fantasy I wanted to pursue was of disappearing, taking on another identity and getting a tiny apartment and a job in a bookstore in some completely different part of the country. My first reaction what that I would hate to betray my professional colleagues that way. The bigger issue, though, is what a mess that would leave, if no one could access my money because I had disappeared. John would run out of money in a few months and what would he do, sell things? He does have one friend I think would come and help him but no family he is close to except his 95 year old aunt. My mother and sisters would probably end up helping him.

His aunt is a whole other story. She lives in an apartment in a retirement community near us and John is the only family member helping her. She is still sharp but due to knee problems can barely walk with a walker. She doesn't depend on John for too much; she pays someone to drive her. But John doesn't want her to know he has Parkinson's because she already fusses about his health in a way that offends him. I would think it would be obvious but she hasn't asked. He told her he had retired early because of new bureaucratic rules affecting his job. I am very uncomfortable with lying, and this was in front of me (we try to have lunch or supper with her once a week). Not a good situation, with lots of potential to get worse.