Sunday, August 31, 2008

Labor Day

We don't get Labor Day off--I teach my class as usual tomorrow. The university where I teach doesn't give Monday holidays. We joke that the state thinks Labor Day is a communist plot, but actually it is that science/math/engineering professors who teach on Monday don't want to have fewer class days. We don't even get Memorial Day--the only Monday holiday we get is Martin Luther King day, which they finally realized they couldn't get away with skipping. I'm tired but I ran today so I may try to sleep in a little tomorrow. Swimming at 5:30 am starts Tuesday.


We had lunch with John's aunt today, as we do most Sundays. She is 96 and gets around with a walker, but is fairly sharp. She moved here from Oregon about 15 years ago because John is her closest relative--she never married. She lives in an apartment in a nearby retirement community which does have different levels of care. Lunch is provided in the dining hall but she hires a driver to take her out to buy food and still makes her own breakfast and supper. Occasionally she comes to our house for supper but more often John picks her up and we have lunch together at a restaurant.

What worries me is that John doesn't want to tell her even that he has Parkinson's disease. She tends to be obsessive about health and he doesn't like it when she criticizes his food choices (she carefully eats a very low fat diet). He has been good about helping her himself when she occasionally needs help, not putting it on me. But it worries me that she is counting on him to continue to be available.

I told John that at least he should get her to change her durable power of attorney document so that it would name me as backup. He said he could do that, but I don't think he has raised the subject. I can't imagine doing it myself because I am so uncomfortable with keeping secrets that the only way I know to respect his wishes is to avoid any related subject.

Saturday, August 30, 2008

quiet weekend

I don't have Monday off--the university where I teach doesn't give Monday holidays (except Martin Luther King Day). But becaused it is a holiday weekend there is less on the calendar, so it feels restful. We were going to go look for a car for John today, but then we got interested in a Scion XD and the dealer will call us when one comes in in a couple of days. John has been driving a Dodge minivan, but it has over 100,000 miles on it (and we haven't found them terribly reliable) and John passed his driving evaluation. I have no guess how much longer he will be able to drive, but we have two kids with learners permits so we are likely to continue to have a use for a second car.

We think he needs a car where he sits up fairly high so it will be easier to get in and out. I like the Scion as the smaller equivalent of a minivan with the lowest cost and best gas mileage (the Honda Element is bigger and only seats two in back). I have a 2008 xB that I like very much. The Scion xB is the car that looks like a toaster, only the 2008 version they made larger and not quite so boxy. We were looking for an older used one for John, until I happened to look at the xD model, which is more of a hatchback and less of a miniature van and costs under $17,000 new with automatic transmission. The next step is to try one out and see if it is as easy to get in and out of as the xB.

I looked for some kind of listing of cars that are easy to get in and out of or are suitable for people with Parkinson's disease, but I can't find anything but reviews of wheelchair conversions.

Friday, August 29, 2008

impaired but not demented

I just ran into an old article in the New York Times about the needs of people in the early stages of Alzheimer's disease. It seemed to me applicable to Lewy Body too--what can someone do in the years after they are impaired but before they become incompetent? It stresses support groups and advocacy, which don't interest John. What I wish he would do is go through his stuff, figuring out what is worth keeping and writing down the stories behind family things. I'm working on hiring a student to help him with organizing one or two afternoons a week, but it is hard to get John to tackle the things he has too many of (from clothes to videotapes).

Thursday, August 28, 2008


I feel like I am reaching a place of more acceptance. I said to a friend today that caring for John feels like finishing what I started. We've been together a lot of years and I will see it through. That lets me feel I have some choice, but my reason for my choice is a quiet one, not some crushing obligation or expression of perfect love. I think it helps that I'm beginning to see more of the shape of the stage we are in instead of just finding it confusing. John has planned two trips on his own in September and October. One is to Texas to see a friend and visit his parent's graves. He is finding ways to do things while he still can; I don't have to do it all for him yet.

Wednesday, August 27, 2008

journal workshop #2

My second writing for the journal workshop, with prompts in red:

Which parts of caring for a loved one give you joy?

At present I don’t feel a whole lot either of joy or of love. At the time when John was diagnosed I was feeling dissatisfied with the relationship even though we have usually worked together well. I had grown and changed and he wasn’t willing to grow with me. I don’t know how much of that was already the disease. My other issue with love is that I always expected love between husband and wife to be some balance of meeting each other’s needs. I haven’t learned how to feel love for him when there isn’t reciprocal care, when he doesn’t respond to my needs. I did that kind of caregiving for my kids when they were small, of course, but I had John to take care of me. It wasn’t easy for me; I felt I was giving what I didn’t have. I depended on John to give me what I was giving my kids so I wouldn’t feel resentful that I was giving what no one had given me. He remembers a day when I was frustrated with our son as a fussy infant and got angry at John. He said “Don’t take it out on me,” and I said “Who else do I have to take it out on?” I don’t have a partner of that sort in this caregiving.

The parts of caregiving that are easiest for me are the planning parts. I’ve gotten our financial situation into shape, from his retirement to my investments to buying long-term care insurance on myself (too late to buy it on him). This week I started work on changing the beneficiary on my retirement accounts, just in case I die before him. I’m also working on probably moving in a little less than a year, planning renovation of another house we own to be handicapped accessible. (It is currently rented to students, so it needs a lot of renovation.) I’m also good at understanding medical information and dealing with doctors; I know John is doing better than he would be on his own because of my attention to getting him the right medical care.

Which parts do you resent?

I try to avoid getting into a place of doing something resentfully—that isn’t good for anyone involved. The place where I am struggling most with resentment these days is when I set something up for John and he doesn’t follow through. He went to an exercise class I found for him and said it was just what he needed, and more than a month later he hasn’t been back. He said he would mail a package so I put what needed to go in it and the address all together, and then over a week later he hadn’t gotten it done.

I’m learning to be better at figuring out what is easier to do myself and what I have the patience to let him do. But there are things I can’t do for him, particularly at this stage when he can still manage activities of daily living on his own. Maybe I should exercise with him, but what works for him isn’t what I want or need.

What do you miss about your old life and what do you love about your new life?

I miss the freedom to train (run, bike, and swim) 12 hours a week as I was doing a year ago. This year I’m averaging 6 or 7 hours a week. I miss time when I can make my own professional writing first priority. I miss having someone to divide tasks with. I miss being taken care of sometimes. I miss being middle-aged, not yet thinking about retirement. I miss all those expectations that life would go on the way it was going. I also miss my kids now that they have gone back to school.

My first reaction was that there wasn’t anything I love about my new life. But I love the support of my daughter and my therapist. I actually think I also love the sense that everything is important. My planning and my decisions matter. We can’t take life for granted so much any more.

Tuesday, August 26, 2008

wild day

I helped carry my daughter's things to her room at school, then headed for the airport. When I got to the airport, I learned that the air traffic control system for the entire nation had crashed. At one point I heard the backup system could handle one flight out of three. I don't know if they got the main system back up again, but my flight left more or less on time despite weather problems at our destination airport, Charlotte. Now I'm waiting for my second flight, which was listed as on time until departure time passed and now is listed as an hour late.

I called John to report that it looked like I might be lucky and get home, and he was having dinner with friends. A tornado touched down within a block of our house, as best I can figure out, and the power is out. He wasn't aware of any damage. He called the friends to see if they had power and they invited him to dinner. The people in my building at work were told to go to the basement twice this afternoon because of tornados.

Update: I got home around 11:30 pm and counted myself lucky. And our power was already back on.

Sunday, August 24, 2008

keeping up with the news

John has long recorded All Things Considered to listen to when working around the house or driving, and in recent years he has spent a lot of time reading the New York Times and the Washington Post on the computer. When one of our kids got a new laptop and John took the old one, he kept a still older one he had been using. The older one lives downstairs in his home office, the newer one is usually on the kitchen table but at present is in the shop being fixed.

When Obama announced his vice presidential candidate yesterday, it was just the kind of breaking news that most fascinates John. He was downstairs in his office on the computer when I got back from my bike ride and he hadn't come up when I took a friend of my daughter's home at 4. Apparently he was so engaged in the news that he forgot to eat lunch.

Saturday, August 23, 2008

one back to school

We took our son to his senior year of boarding school yesterday. I started to cry when we met with the college counsellor. I feel like worry about John's and my future has distracted me from helping our son with deciding about colleges. He was supposed to write a draft of an essay this summer, but he didn't even start it. I did remind him a few times, which leads to the other time I cried, talking to his advisor, worrying whether he will learn to step up and take responsibility for himself.

I'm hoping that pushing our son to take more resonsibility for himself because of his father's illness is coming at a time when the challenge is right for him. But I worry that it must be awfully hard for an 18 year old boy to have his father beginning not to be a father figure any more. His sister is younger but more resilient and more able to talk about what she is feeling. The idea that this is going to be hard but we are all in it together as a family works for her.

Thursday, August 21, 2008


Our son goes back to boarding school tomorrow, our daughter on Monday. Last year empty nest hit me as a big shock. This year so much has changed. I am glad the kids were away last spring when John was diagnosed and also went through prostate surgery (for benign enlargement, but he had a rough recovery). But I will miss them.

I drove the kids to an eye doctor appointment today more than an hour away and we talked, but mostly about their lives. I did hear more John and our son's trip to visit colleges, and it does sound like it went very smoothly. We talked about their schools, not about the future.

Wednesday, August 20, 2008

about me

I'm doing a journaling workshop for caregivers and this week's assignment is to write about ourselves. This is what I wrote (with prompts in red):

Write about who you've become.
I’ve become several things I never thought I would be. I’ve become an administrator on a small scale, running a program at work that I deeply believe in and that has a significant impact (every student in the university has to take a course in our area). I’ve become an athlete. And now I’m becoming a caregiver.

Write about who you used to be.
As a child I tried so hard to be good. I was sexually abused by my mother and grandmother but I hid the pain all too well. School was my safe place. My junior year of high school I got excited about learning and carried that through college and graduate school. In college I discovered feminism, which gave me a way of accepting myself as a woman, but I didn’t expect that I would marry. Feminism even led to my first interest in religion (having been raised in a culturally Christian but atheist family). I was baptized when I was 27 and joined first the United Church of Christ (I’m now an Episcopalian).

I was 31 when John and I married and he was 41—a first marriage for both of us. We understood marriage to be an equal partnership. Our first child was born three years later. After our daughter was born not quite three years later we had a tough couple of years; first our son had kidney infections because of a problem that was corrected eventually by bladder surgery, then he was diagnosed with Attention Deficit Disorder and language issues (we just barely escaped an autism diagnosis), then he had eye muscle surgery. He’s now doing well going into his senior year of high school but I do worry about finding the right college.

I did a lot of work from about 1995 to 2005 on my own inner healing with the help of a wonderful patient therapist. I learned very much to trust my own journey. John was very supportive, though a lot of responsibility always fell on me because I was a better organizer than he was even as I took myself apart and put myself back together.

Write about what is and/or is not working in your life today.
Today I am confused. John is in the very early stages and friends say they don’t see him as having changed, except that he moves more slowly. Yet I have had to take over most things that are complex, such as financial planning. He did take our son to visit colleges for two days this week, and they report that the trip went well. He made those arrangements himself three weeks ago, but it took him all week. He was too busy with that all week to fill out a form related to retirement or send a package he said he would send or go to exercise class or physical therapy.

Mostly I do almost all the family organizing, while he can still take care of himself. But even doing all the organizing feels overwhelming. It is hard to decide how much taking care of John needs. I go to all doctor’s appointments with him, and I remind him of things. I straightened out his medications in May and the prescriptions are messed up again; I may need to take that over soon. I feel like he isn’t my partner any more, and I feel guilty about my coldness.

I hate most how unpredictable everything is. I don’t know how to put the pieces together.

college trip quick update

John and our son are safely home from their trip to visit colleges, and particularly liked College of Wooster. I went to work before either of them was away this morning, but what I heard whenever I spoke to them by phone was that everything was going smoothly.

Monday, August 18, 2008

Feminism again

I posted a query about feminist theory of caregiving in the comments here. Scotlyn wrote a wonderful reply:
Pam, I can’t give you any ready answer with this, although I do understand what may lie ahead in relation to caring, having spent ten years helping to care for my husband’s uncle, who suffered from all of the worst manifestations of Alzheimer’s among other things. It is extremely difficult to bear sometimes. Not being recognised is par for the course, and it is hard enough, but Paddy, for example, came to fear things like taking a meal I had prepared in case I was trying to poison him…well, you can imagine.

What kept me going through the hard times, and also through the strange times when people kept saying “aren’t you good to him” (which I read as code for “I can’t imagine why you would even bother,”), was this. I spent much of my feminist youth arguing for independence for women (from our caring roles, among others). But as I grew older, had children, and acquired dependent relatives by other means, I have come to appreciate the value of “family,” small “f,” as opposed to Family, capital “F,” which is what homophobic, patriarchal defenders seek to protect.

In “families” - that is, the real life close-knit connections that people build for themselves within their closest circle - whether by choice, by birth, by adoption, by fostoring, or simply by close contact, each individual matters, not because they can contribute any material benefit, but because every person has a value and a place of their very own. Interdependence, rather than independence, defines how we operate within “families.”

To me, my role as a carer in a small-f “family” falls between two strong tendencies which powerful interests emphasise - but in opposite directions. The capital-F “Family,” that I learned in my Christian childhood was part of God’s plan, is a pre-determined set of rigid roles - “wife” “husband” “son” “daughter” - which lays out rules about who can participate (not lesbians or other homosexual folk), who is in charge (the father), and what the role consists in (wife=caring/nurturing).

On the other hand, the apparent liberation of being “independent,” is in some ways the capitalist trap, which says that people only have value as producers and consumers - if they are dependent on others they no longer have any value. That striving for independence can doom us to living each on our own island without being able to reach out to one another in care and/or in need.

But no one person can spend their life without needing - in childhood we need our parents or care-givers, and in age we will again (should we be so lucky to see it), and in between, some smaller proportion of us will always need some degree of care from others. And, as I see it, during the mid-adult years, those of us who are both strong and able do owe a duty of care to those within our reach who are in need - we owe it indirectly to those who have cared for us in the past, and those who will care for us in the future.

And, although it breaks my heart to say it, because I know for some avoiding this is for all practical purposes impossible, I do feel we relegate this duty of care to the state at our very great peril.
and then further:
Anyway, I have one more thought which relates back to the original quote that started this thread (learn to relevance:-)), as well, which is that, to me, the word “choice” also has some of those capitalist trap overtones. Capitalist market theory is about providing endless “choices,” from which ideally free agents can “choose,” but in real life we continually find ourselves in situations in which we really have little or no choice. And is the illusion of “choice” part of the illusion of “control?”

I know the situation you are struggling with is not of your choosing, nor of your husband’s choosing. It is what it is, and for no good or understandable reason.

It is important to remember that we are not necessarily diminished by recognising such limitations and still going on to live (and to love) as good and hard as we can within situations not of our choosing and beyone our control.

Just to live and to love, despite all, are sometimes in themselves the ultimate triumph.
I'm not sure I'm willing to give up seeing choice as central to feminism (partly because I think it a better center than self-realization, partly because my experience as a sexual abuse survivor makes it especially important to me to feel some control). I do believe that in addition to situations in which we have no choice, there are also meaningful choices and meaningless choices. Choosing between McDonalds and Burger King is a meaningless choice.

I am a part of a particular liberal Christian tradition that says if I look at my deepest desires, they will lead me to be the person God wants me to be. That and feminism lead me away from the traditional role of the self-sacrificing woman. Instead, I believe that to grow means being willing to chose to do things that are hard and painful. I think of those things as being for the good of the world. I will think more about Scotlyn's idea of small "f" family. Owing a duty indirectly to those who cared for me in the past is tricky for me because my mother abused me. I don't easily trust the idea of family as a refuge.

Sunday, August 17, 2008

Race Report: Greenville Triathlon

swim 00:12:07
t1 00:03:51
bike 01:03:33
t2 00:02:22
run 00:46:33
total 02:08:24
177 out of 182 women (actually I was the last finisher by time, though others who started later crossed the line later, but there were 5 women and 9 men who started but did not finish).

I never got fully focused on this race. First I forgot about it--I knew I had a race before my daughter went back to school but I was assuming it was next weekend until it came up on my calendar Saturday morning. Then I got a comment on my other blog last night that I found hurtful. Basically, the person was telling me that I need to quit my job and care for my husband (or if I didn't love him enough to do that just put him in a facility). Then this morning my daughter and I drove to the race in pouring rain and thunder and lightening. Not long before 6:30 I saw some dramatic lightening. A few minutes before 7 they announced they hadn't heard any thunder for 30 minutes so the race was going ahead as a triathlon (apparently they would have run it as a duathlon if there had still been thunder). Sure enough, the rain stopped and by the end of the race the sun was out. But it meant that for most of the time getting set up for the race I wasn't sure if it was going to happen.

Because of the rain I left my Garmin in the car and at the last minute I decided to give my daughter my watch because I have had them ruined in pools before. I did this race once before, two years ago, but I didn't remember the course in much detail. So I didn't have any of the information I usually race with, which I decided was an interesting experiment.

The swim is a 400 meter pool swim. I didn't do a warmup but I'm getting a little more used to a 50 meter pool. But my daughter's picture shows some pretty strange swimming.

I had left my gear in a plastic bag so it wouldn't be soaked, but I don't think that slowed me down much in transition. I was cautious on the bike course, as the roads were still very wet. Actually I did nearly take a fall, but it wasn't because of wet roads. Towards the end of the bike I caught my tire on the edge of the pavement and thought I was going down, but somehow I got my bike back under me. The first, more rural, part of the route was beautiful, with the sun about to peek out from the clouds. The bike was where it was strange not to have any information--I didn't know if I was 1/4 of the way through the course or 3/4 of the way.

The run felt very slow. The sun had come out and the course is odd, with some rutted dirt road and two loops around a small neighborhood. It felt like a struggle to keep going and I am very surprised I was only a minute or so slower than Asheville.

Somehow at the end I look happy. I think by that point I had come to the realization that the lesson for me in this race is that I may not be talented, but I get the job done. It struck me that that will carry me through being a caregiver for my husband.

college trip

John and our son have gone to Ohio to visit colleges, flying there and then renting a car. They come back late Tuesday evening. John was convinced he could manage this on his own. I had concerns, particularly as our son doesn't tend to pay attention to what is going on around him, but I don't have time to do it myself. I am somewhat reassured because John did do a driving evaluation last week, with a occupational therapist, and he reported that he passed but she had some suggestions. But mostly I am praying for them.

I did a race this morning so I wasn't here when they left, but John called me between flights so they got off ok. He asked me to ask about his wedding ring, which he thought he had left at Kanuga two weeks ago. After my race our daughter and I went up to Kanuga to see cousins who are there this week. I asked at the front desk and was told they had found a wedding ring and wondered why nobody called about it. Hopefully it is still locked in the housekeeper's office (but she wasn't there today).

Saturday, August 16, 2008

Who I am

  • I'm a childhood sexual abuse survivor who has found healing.
  • I'm a mother of two honorable kids.
  • I'm a feminist, and that is particularly important to me because it was crucial to my healing.
  • I have a job doing work I deeply believe in.
  • I am a child of God.
  • I am learning to be a caregiver.

I think we each must find our own personal way of making sense of the caregiver role. I haven't found mine yet, but I believe I will. I'm going to find it by basing it in who I am, not by trying to be someone I am not.

Friday, August 15, 2008


When I got up this morning around 6 the dishwasher was still warm, so John must have finished loading it in the middle of the night, after sleeping in a chair for a while. He went to bed sometime after I got up. I got home from running and took a shower about 8:30 and he asked me what time it was. I thought he was getting up but when I went back to the bedroom an hour later he was asleep with a pillow over his eyes. I went to work then so I don't know when he got up.

In one sense it isn't a sleep problem because he isn't tired during the day. But he is sleeping later and later, which gets in the way of his being able to get things done. The exercise class he liked was at 10 am and I don't think he has gotten back.

The specialist said John shouldn't watch TV late at night because it would draw him away from sleeping. John said he doesn't have any other time to watch TV, since I don't like it on. The specialist said "Surely there is another solution for that."

I'm not sure whether to take the attitude that now he is retired he can follow any schedule he wants or to worry that increasingly disorganized sleep patterns will lead to problems.

Thursday, August 14, 2008


Two nonstop days of random stuff. I'm tired and discouraged. After sounding last night like he was getting into the idea of moving, John told our daughter today that he is going along with the idea because once I get something in my head nothing will shake me. And our son finally paid attention (after not being interested in going to look at the house earlier in the week) and wasn't happy that he won't have a room that is all his own. I've got too many things to do and less than a week before classes start.

I read an article on caregiver resentment today (page 5 here). At this stage I have plenty of time away from caregiving. But I have mixed feelings about the advice to take control. That has certainly been my approach, to get things like finances in better order because that is something I have more control over. But there are several dangers to taking control. One is that I might slip into thinking I can control what is at heart an uncontrollable situation. Another is that it is scary and overwhelming to feel responsible for everything--what if I make a mistake? And finally it is simply too much to try to do.

I'm going to take care of myself and go to bed early.

Wednesday, August 13, 2008

second visit to the house

The students who have rented the house until May 9 were all asleep when we arrived at 11 am. But we did our walk through and measurements anyway. John came for part of it and liked what the designer had to say. I think we decided the best way to solve the bathroom issue is to move the toilet and sink maybe 10 feet--in effect rotate a rectangular room 90 degrees. The designer didn't think the extra expense would be excessive and it would make both the bathroom and the room it is off work much better.

The big news is that even with half the lights burned out and the rooms full of college student chaos, the designer was able to convince John that his space could be made nice. And I think almost all of what we do will go right into the value of the house. The neighborhood is improving--most of the houses are simple ranch houses but three have been torn down and replaced with McMansions. Our house is not big but it is a brick house--more than a simple ranch house.

Another nonstop day. I need to go to sleep.

Tuesday, August 12, 2008


I made two appointments to look at the old house, one with a builder who is a certified aging in place specialist today, one with a designer tomorrow. I liked today's person. While he didn't seem to know much more than ADA requirements, he seemed to get my vision for the house and be able to work with our timeframe. He said we would have a hard time finding a house with as good an entrance (no step at all from the carport to the lower level) if we went looking for one. There are some questions about perhaps expanding the bathroom or making a new door between rooms that need more thought.

Most important, our daughter, who had never been in the house, liked it.

I went up to North Carolina to see a friend this evening and it is late. I will write more tomorrow after the second appointment.

Monday, August 11, 2008

sharing tasks

When we met with the therapist today, John said he felt I see him as incompetent. I said it isn't that I see him as incompetent, but I do find I have to do almost everything, and that comes to almost the same thing on a practical level. As we talked back and forth about his not getting done things he said he would do, he said: "I don't think you understand that it took me all evening to load the dishwasher." There you have it--I can't expect him to do very much because the disease makes him so slow. To me, that makes my dilemma clear. I could load the dishwasher in 20 minutes, probably less(we had one guest for dinner last night and a slightly more complex meal than usual) .

I suppose I need to learn to count effort, that he spent all evening doing a family task. But I'm still panicked about how can I possibly do everything myself, particularly when I go back to teaching next week. So it scares me that he can get done so little. I know I should encourage him to do as much as possible. But isn't there a better use of his time than spending all evening loading the dishwasher? I don't think there is; he is now both loading and unloading the dishwasher when I cook after a conversation about his doing more than his share of things he can still do.

I know my attitude is lousy. I'm thrashing; I'm just not good at this. But the only way I know to get to a better place is to be honest about my feelings.

Sunday, August 10, 2008


A friend of mine wrote a powerful post about resillience. She writes that she has a strong sense that whatever comes her way, she can find a way through it. That part I can do, but I wasn't ready for something this hard, this soon after the last hard part of my journey.

Saturday, August 09, 2008

enjoying life while he can

John's approach to his diagnosis is to want to make the most of the time he has. That is certainly a lot better than being depressed about it, but it doesn't combine well with my wanting to get everything worked out. I feel burdened trying to organize our future, and he is out having a good time. It doesn't happen very often, but the larger pattern is that he can get done the things he is interested in but not the things he has agreed to do to help me.

Tonight John went out with his wine drinking friend (wine is John's hobby, while I don't drink). I had complained a month ago when he went out when our daughter was home just for a few days, but he didn't think he was wrong. This time the situation is that I have been caring for our son since he had his wisdom teeth out yesterday. John and our daughter didn't even come home from vacation in North Carolina until noontime today. But I can't complain too much because the recovery from oral surgery has gone much more easily for our son than it did for our daughter last fall--he hasn't even taken pain medication today. All I have to do is keep making him smoothies.

Friday, August 08, 2008

wisdom teeth

My son had four wisdom teeth removed today. So far so good--my daughter last fall had a lot of pain and I learned better strategies for this time. Insisted that they call the pain medicine into the pharmacy rather than giving me a prescription so I could get it faster and started him right away on 1/2 pill every two hours instead of a whole pill every four hours.

He and I came home from Kanuga a day early for the surgery. So I was grading for my online course for most of my vacation, but I did get in two good bike rides, two runs, two hikes with my daughter, and four swims across the lake.

Thinking about a ritual (Christian)

Wed. morning at a service for the Feast of the Transfiguration, I was struck by the idea that the transfiguration was an ordination or commissioning of Jesus into his full-fledged ministry. My thought was that I want to be commissioned as a caregiver.

I'm not ready yet; I'm not over "I don't want to do this." But when I am, I wish for a ritual by which my taking on this new role in life would be recognized. It does feel to me like becoming a different person and I want to mark that. It is certainly as big a change in who I am as marriage was.

Most of all I want something that will make me more able to feel that God is with me.

Thursday, August 07, 2008

quick update

I've spent too much time in the lobby where there is wireless internet finishing up grading my online course. It is finally done and the grades entered.

We did go for a hike this morning--our daughter and I went up to Wolf Mountain. John went with us the first part and then turned off on a shorter path home. It is strange to have to stop and wait for him--he used to walk much faster than I do. He said he explained to some people we have been friends with here for several years that he feels like he has aged 15 years in a few months.

Tomorrow will be an exercise in a different kind of caregiving--our son has his wisdom teeth removed. He saw his sister's experience last fall so he is afraid of the pain. I hope I've learned from the other experience to get the pain medication into him more quickly so it won't be as bad.

Monday, August 04, 2008


John and the kids took a hike of 3 or 4 miles round trip up to a view yesterday afternoon. He came back saying he was very tired, that was as much as he was good for, but he felt good about it and wanted to keep hiking. This morning he said he wasn't sore but this afternoon he set out for a hike but came right back--his knee was hurting. I suggested that he go for 1/4 mile and see if it worked out, but he said he didn't want to risk it. He has always been cautious, but it feels to me like he is getting more fearful.

I hadn't volunteered to go with him partly because I had grading I had to get done. But I also had gone on a road bike ride in the morning led by a mountain biker. The trouble with mountain bikers is they like to ride up hills just for the sake of riding up hills. It was hard--only 27 miles but something like 4000 feet of climbing.

Sunday, August 03, 2008


John is doing well--no complaints about the stairs up to our cabin or the walk to the dining room. I was in tears at the end of the church service this morning. We have come here for a week every August for 12 years, and I wonder how much longer we will be able to come. It is hard to come back to a familiar place and have things be different. John did set out with the kids this afternoon to hike up to a view. He was going to take the easier route and he is using a hiking stick--I hope it worked ok for him.

Friday, August 01, 2008


I've got two appointments to look at the house scheduled for the week after next, one with a builder who is an aging in place specialist and one with the good-old-boy designer. That should give me a lot more information. The work can't start before May 2009, but I want enough information this summer to know whether we are going to go forward or not.

I've got a phone conference scheduled next week with my stockbroker, and pulling together information for him made me feel that the financial stuff is in pretty good shape. All the disability applications are in, and one of the three is approved. John's monthly checks are beginning to come--disability retirement has started, social security retirement starts later this month, and the annuity (and disability insurance if approved) start in September. The home equity line of credit is in place. Here is (most of) the summary I wrote for the stockbroker:
  • John gets employee health insurance as a retiree until Medicare kicks in, and then the retiree Medicare supplement policy is supposedly pretty good. But he does not have long term care insurance (one of the first things I did after he was diagnosed was get long term care insurance for me).
  • Life expectancy with a diagnosis of Lewy Body dementia is 2 to 20 years. I’m guessing 3-5 years of pretty much being able to take care of himself, then needing increasing help. I really don’t have a guess of how long he will be able to stay at home with part time care—it depends a lot on whether the psychosis that is common with the disease hits him badly. It could be six months or four or more years of needing around the clock care. The company from which we got an impaired risk annuity with his retirement savings bet he wouldn’t live more than 11 years (they are paying 9%).
  • We don’t have strong views on home care vs. a facility where I could easily visit him, but I suspect we will probably go with home care as long as possible because the nearby facilities don’t have separate dementia units.
  • The lawyer who did our prenuptial agreement (and wills and power of attorneys) says the prenuptial agreement may well be enough to shield my assets if we have to reduce ourselves to poverty so Medicaid will pay for a nursing home.
  • Now that John’s monthly checks are beginning to come in I think we will be ok, though I haven’t figured out the tax situation very well and we do want to do some travel while we can. The problem will come when the cost of John’s care goes up.
  • My retirement looks quite comfortable and I feel the kids are well taken care of. I do not want to retire early (though I am eligible for full retirement at 58).
  • John is able to go out to dinner with friends and nobody notices anything but the Parkinson’s slowness. He does get confused and has trouble with complicated decisions so he is leaving the financial matters entirely to me. Sometimes just the number of things I now have to manage is overwhelming.
  • I’m scared, but I’ve said I want to spend this summer trying to get things in order for the future, and then hopefully be able to live more day by day.
Tomorrow we get to go away for vacation in Hendersonville NC. Except I'm teaching an online course that ends on Wednesday and I'm way behind on grading. And our son's wisdom teeth surgery got moved up to next Friday. But I'm still looking forward to the vacation--a cabin at a retreat center, meals in a central dining room--I don't have to cook or plan.