Monday, December 22, 2008
I got my daughter a copy of Don't Sweat the Small Stuff and I read part of it myself and think that I might actually be ready now to listen to those ideas. Our daughter has been happy to help me in the kitchen and that has made me more cheerful about making Christmas happen. We had friends over for dinner last night--goose with sauerkraut and sausage stuffing, mashed cauliflower, green beans, and pumpkin flan.
Tomorrow we leave for three days in Rome, John and I and the kids, and then a week in Venice in a small hotel with my two sisters and their husbands and kids and my mother. I'm at the point where I'm feeling overwhelmed by packing and trying to get ready.
I don't know how much I will be posting during the trip but I am bringing my computer.
Saturday, December 20, 2008
I asked John to work on Christmas a month ago, when I was swamped at work, and he has done some things. He has invited friends to come for dinner tomorrow and bought the goose. I know he bought some books for the kids. I did buy a present for him to give me, as he has for years had trouble figuring that one out. I was worried I didn't have much for him, but then I found two books he wanted on CD. I'm also giving him Dragon Naturally Speaking 10 software so he can start experimenting with speech to text. I think he will need a new computer to run it well but I keep wondering if he would be better off with a desktop on a rolling stand with a full sized keyboard instead of a new laptop.
Thursday, December 18, 2008
John seems reasonably content with the way things are now, but I still feel guilty about the things he was complaining about a couple of weeks ago.
I walked through the house we want to move back to with the designer on a bleak day with the heat off and his estimate of what the work will cost is twice what I had thought. Not impossible, as the house we are currently in is the more valuable one (both bigger and in a prime location), but I thought I had all the money I needed lined up and I wouldn't have to worry about that and it isn't looking that way.
I continue to hear more discouraging news about the program I run at work. My job is secure, but what I've built is not.
We are going away Dec. 23rd on another big trip. I'm trying to keep track of what needs to be done. The first few days it will just be John and I and our kids, but much of the time we will be with my sisters, their husbands and kids, and my mother. I always feel torn between being myself and fitting in and I also wonder how they will react to where John is now.
Our daughter is discouraged after a tough semester at school.
I'm still not fully recovered from my sinus infection--now I'm having coughing fits. I haven't been able to do my regular exercise. And the antibiotic has thrown off my digestive system a bit.
People tell me to take things a day at a time and I just feel like a failure because I don't know how to do that. Somebody has to plan. I am too uptight about making mistakes, but I can't change that, except very very slowly.
Monday, December 15, 2008
He asked me how I felt and I said I can manage with the way things are now, but when he was unhappy and wanted it to be different I didn't know how I could respond.
Our kids come home Thursday and Friday and we go away next Tuesday, so John and the graduate student won't have a chance to work further on the project until after we get back from our trip. But the graduate student went away with pages of notes to make into an outline of what to ask John's aunt about.
Sunday, December 14, 2008
Then we changed the sheets and put on a new comforter cover, and that was where John had a hard time. Some of his problem was fine motor skills like buttoning the comforter cover, but where he commented on his difficulties was that he got confused with the process of putting on the cover. My method is to turn the cover inside out and lay it on the bed, attach the comforter at the corners, reach inside the cover and grab the far corner, and then turn the cover right side out with the comforter inside. It does sound confusing when I write it. It is a lot easier to do with two people than alone.
1 cup apricot nectar
¼ cup rum or brandy
1 cup golden raisins
1 cup dried tart cherries
16 oz. apricots, cut in pieces
8 oz. dates, cut in pieces
6 oz. mission figs, cut in pieces
4 oz chopped candied orange peel (optional—if you don’t like fruit cake skip this)
3 oz. crystallized ginger, cut in pieces
(total about 8 cups of fruit)
3 cups flour, white or white whole wheat
2 teasp salt
¼ teasp baking soda
2 teasp cinnamon
1 teasp allspice
1 teasp nutmeg
½ teasp cloves
½ teasp cardamom
1 cup butter
1 cup sugar
2 teasp vanilla
2 cups coarsely chopped pecans
Mix fruit, apricot nectar, and liquor, cook for 5 minutes over moderate heat stirring steadily. Set aside for a couple of hours or overnight. Preheat oven to 300 degrees. Cream butter and sugar, beat in eggs then add vanilla. Stir in sifted flour and spice mixture (if you want to use the spices—I left them out). Stir in fruit mixture and nuts and divide into four 4 by 8 inch heavily greased loaf pans. Bake for 2 hours or until a knife comes out clean. Cool in pans.
Saturday, December 13, 2008
John’s big news is that he has retired early, and this has resulted from a serious health issue. Indeed it has been quite a tough year for him. The life changing health situation is Parkinson’s. One never anticipates such a development, and it was Pam who first perceived what the changes John was experiencing might mean. Pam began to suspect what the problem might be in January, and after John having first visited his regular physician, he was formally diagnosed by a neurologist in early March.That is followed by more about his prostate problems last spring.
In my part of the letter I wrote:
Pam spent a lot of time going with John to doctors appointments and so realized quickly that his diagnosis meant a change in life path for both of us (particularly as the doctors think he has a form of Parkinsonism that has cognitive as well as motor effects). She thinks a lot about how to put feminism and caregiving together and how to find meaning in our new challenges.And then a sentence each about my work, doing triathlons, and serving as a spiritual director. Often we don't get our Christmas cards out before Christmas but I'm actually done my other big tasks and wondering what to try to get done about Christmas.
Friday, December 12, 2008
But where I am seriously stumped is that I don't know what of John's income is taxable and what is tax free:
- Is social security retirement (or social security disability if he gets it) taxed?
- Is his retirement income from his job as a state employee taxed?
- Is his private disability insurance taxed?
- The one I am pretty sure of is that his annuity income is taxed, as we bought that with untaxed money such as IRAs
I was thinking maybe I could get someone to help me with the form but after going through it once myself the problem is that I am going to have to go to several different people to get answers to different questions. I am grateful at least for a good online form that saves the information I entered and then prints out a list of questions I still need to answer.
Thursday, December 11, 2008
I arranged for an older graduate student named Mike to come over yesterday to meet with John. He is going to help John start recording family history--both the stories John knows and they will also interview John's 96 year old aunt who lives in a retirement community nearby. I may take over the interviewing when John gets to telling his own story, but there is a lot of family history he wants to get down first. Mike will figure out the technology--a digital voice recorder with two clip on microphones, probably Audacity to edit the files, and Dragon Naturally Speaking for some transcribing. John seems enthusiastic--he said months ago that he was going to interview Aunt Florence and had not made any progress towards starting so I think he is glad to have help getting focused. He has a lot of background in oral history interviewing so he can also see himself as teaching Mike.
Tuesday, December 09, 2008
I'm thinking I should do the same with John. Our daughter talked about taping family stories last summer and he liked the idea, but she didn't have time and energy. It would be something of value to our kids to have and would give John and me something to do together.
It is hard for me to make that commitment to John. The voice is still so strong in my head saying "what about me?" What about all the other things I have to do? What about the kind of spiritual journey I wish I could share with him and he isn't interested in? (He says he wants to hear about my journey so long as I don't expect him to feel anything similar; I said it doesn't work that way when it is his disease.)
Monday, December 08, 2008
After I came home I happened to read a story (Christian) on the internet about the importance of being true to our feelings (this link goes to part three, but has links at the beginning to parts 1 and 2). I feel like my only choices are to betray myself to keep him content or to betray him.
It has been one of my philosophies of life that there are always more than two alternatives. But I'm still not feeling well and I'm too low to think of any right now.
Sunday, December 07, 2008
"Advent is about waiting. Sometimes all we can do is to wait in the darkness, feeling abandoned, isolated, that our lives have no meaning. We hide that pain and fear under our busy-ness and consumerism, but it may be better to accept it, to sit with it and try to remember that God is with us there in the darkness.
When my husband John was diagnosed with Parkinson's last spring, my first impulse was to do something. I did research on the internet, I suggested to the doctors medications to try. Sometimes that approach works--it had worked for me five years ago when I was diagnosed with diabetes and changed my way of eating and started exercising and ended up healthier than I had been in years. But sometimes we have to realize we can't fix it. Nothing I can do or he can do will change the course of John's illness. It has been a hard for me to take that in, to accept that."
I invited the other people present to speak if they wished of where they were waiting in the darkness, either in their personal lives or in the world.
The pastor spoke of our words as a lament, which she defined as speaking our pain to God with an expectation that God is listening.
Saturday, December 06, 2008
Friday, December 05, 2008
Thursday, December 04, 2008
John did have a good time in New York and reports that his travel went smoothly. He doesn't seem too exhausted--he got to a massage appointment today. And he has even been acknowledging the strain on me of all the driving.
Wednesday, December 03, 2008
We can say yes to 4 and 5, but I don't feel I have enough information on 3. I've worked some on writing out my wishes for myself.
Tuesday, December 02, 2008
I think the reason it is not working is that I have not been able to fully get past my resentment over the things I didn't get from my mother (like a safe childhood). I'm not willing to appreciate the things she did/does give me because she didn't give me things I critically needed as a child. So I easily get stuck in child feelings of "it isn't enough." But I don't know how to heal that further with my mother either.
So I am beating myself up about being stuck in anger and resentment. John used to express concern that I was feeling bad about feeling bad. Maybe I just need to give it more time. But I'm wondering what other ways out there might be.
Sunday, November 30, 2008
Friday, November 28, 2008
and I got in a lovely 34 mile bike ride this morning
before the rain came in.
Wednesday, November 26, 2008
If anything, I would say that John is somewhat improved from June, due to Aricept (and more recently he is also taking coconut oil). For a while he was losing insight into his condition, but he has gotten it back. He doesn't want to just be taken care of, he wants to still have a partnership relationship with me.
For a while I resented so much having to do tasks we had formerly shared, such as financial and travel planning and home repairs, that I felt it wasn't a partnership any more. I also resented that he wasn't trying harder to do what he could to improve his quality of life, such as more exercise. I'm working my way through to a better place on that, where I can accept a rebalancing of the relationship. He's volunteering to do some things that are hard for me to get done because I am still working, such as picking up our son at school (though this vacation he said he would do it but then was behind in clearing up his stuff to make room for company coming for dinner and so I had to go pick up P).
John complains that I don't treat him as a partner any more. How can we see ourselves still in a partnership? He has started to do more of some things he can still do, but as soon as it gets beyond his routine he does have trouble getting things done. Can he still give me emotional support? I'm not sure, but he wants to try. It gets tricky when what I am upset about is our future together. But he has always tended to leave me to do the emotional work of the relationship so I do feel he would like me to work out things emotionally for both of us. Sometimes I resent that, but it does mean that he respects my emotional struggles (and he is used to my not accepting things without a struggle).
We are off today to the coast south of Charleston to a retreat center for the Thanksgiving long weekend--John and I, our two kids, and our daughter's boyfriend. This retreat center has lodge rooms, but they also have very low cost accomodations for their Thanksgiving retreat in the cabins used for their summer camp and nature education program for kids. So we will have our own cabin--one big room with five bunk beds and two bathrooms. We will walk on the beach and eat in a communal dining room and I hope to get in some long bike rides. I'm going to take my laptop and I think there is internet access somewhere but I may not post.
Tuesday, November 25, 2008
Some caregivers validate themselves by feeling that self-sacrifice is an honorable path, but I am too much of a feminist to want to go there. Instead, I'm wondering if I can learn to validate myself not by accomplishing something predictable and concrete, but by the fruits of my actions. In the religious circles I run in, people talk about how we can only know if we are doing God's will by the fruits of our actions. If unexpected good things grow out of what we do, then we are following God's path. It involves giving up trying to be in control, but looking for the good that can come out of difficult situations.
Monday, November 24, 2008
I talked about how painful it is to have the program I built at work at risk at the same time that I'm increasingly focused on caregiving, which doesn't involve achieving anything lasting. I said the only accomplishments that come out of caregiving are spiritual ones and there I feel so alone because he isn't interested in finding meaning in the journey we are on. I mentioned a book and he said he wanted to read it, but I'm not optimistic because he has read nothing I have given him except Grayboy's book.
I don't know if any of this is actually still possible for him or if I am doing nothing but setting myself up for disappointment.
Sunday, November 23, 2008
P. said while it is hard for me to try to do everything, that seemed better than having to answer the same question over and over again or deal with inappropriate behavior. And I said yes. I hadn't thought about it that way.
Saturday, November 22, 2008
Friday, November 21, 2008
We have people coming over for dinner tomorrow and John isn't cleaning up his stuff until I tell him to work on each particular thing. He did say to me he thought he had cleared his stuff out of the guest room, could I check. That was a helpful way of handling it--there were several bags and boxes of stuff he had missed. He laughed rather than getting annoyed when I said that in a fit of frustration I had counted his blazers and he has more than 40. He agreed that he needs to give away more than half of them.
I did finally deal with the slow leak in my side of our Comfortaire mattress and called the company. The good news is it is 7 years old but still has a partial warranty--it will cost about $35 including shipping for a new pump unit. I'm glad it is the pump rather than having to dissect the mattress.
Thursday, November 20, 2008
Wednesday, November 19, 2008
I'm reading Hearts of Wisdom: American Women Caring for Kin, 1850-1940 by Emily K. Abel. What strikes me in the first couple of chapters, on the 19th century, is the obligation women felt to drop whatever they were doing to care for family members in case of illness. I was startled by the story of a successful New York physician who left her work to help care for her sister in 1876. One of her patients wrote to her: "Being that you have no husband, your dear mother has the first claim to you." (p. 45)
Abel writes about the sense of competence women got from caregiving, but I'm more struck by how caregiving gave sometimes very isolated 19th century women community because other women came to help and they reciprocated by going to help in other households. How to avoid isolation? My grandmother's wish was to be cared for at home through the whole long process of dying of Alzheimer's and she had the money to allow it, but it looked awfully lonely to me.
Tuesday, November 18, 2008
Monday, November 17, 2008
While in Texas, John spent a lot of time with his closest friend, who has been in denial about John being sick. John said that his friend became very protective of him, doing things for him.
John has now been on 10 mg of Aricept for about two weeks, no problem with side effects. Perhaps it is helping--he went to the town planning board meeting (to oppose a big box store in a residential neighborhood). That seems different from earlier in the fall, when he said he wanted to be a poll watcher but then didn't do anything about signing up for training.
I told John about coconut oil, and he is interested in trying it.
Sunday, November 16, 2008
I suspect that my decision to make the trip shows that I'm learning to be a caregiver. E. was very relieved to get to relax and have her mommy take care of her for a couple of days. By last night her fever was gone and she was feeling somewhat better--it had turned into just a bad cold.
John comes home from Texas tonight. When I called him Friday he sounded somewhat disoriented, but it was apparently because he had just woken up. I hope his travel goes as smoothly as mine did today (mine didn't go so smoothly on Friday--a 2 hours wait on the runway).
Thursday, November 13, 2008
I still feel that if John was 80 I would feel he was doing great, but this isn't what I expected at 63. The doctors seem to think that everything is fine if the John can take care of himself and carry on a conversation without being confused all the time. That is certainly better than the alternative, but not being able to work and share in family organizing make a big difference. John acts older than my father did at 80.
Wednesday, November 12, 2008
Tuesday, November 11, 2008
It is so hard to draw the line of the help that is wanted but not needed.
- being resented for giving help that's needed but not wanted
- getting run ragged trying to give help that is wanted but not needed
- wasting everyone's time by providing help which is neither wanted nor needed (although it never seems so at the time).
I also like the idea of being an elderly lady in training. I feel like I'm having to learn early lessons about letting go of control over my life that most people face at the end of life. And since my grandmother and her sister died of Alzheimer's the long slow way I do keep asking myself what would I want.
I'm thinking a lot about letting go of control and letting go of validating myself by what I achieve (the program I have spent the last five years building may get killed because of budget cuts). There isn't much sense of achievement available in caregiving, it is more like a losing battle against the forces of entropy.
Sunday, November 09, 2008
Bateson's book does have a chapter on caregiving, but she focuses mostly on a very broad notion of caregiving that we do in the workplace and all sorts of settings, not just in the home. She emphasizes interdependence, complementarity, and collaboration (my first reaction is that doesn't do me much good with John).
There is something freeing about Bateson's notions of how life is more creative if it doesn't follow a linear path. And I'm thinking about her idea that parenting is an analogy for much of what we learn in maturity: "the willingness to relinquish control gradually and welcome the transition to an unknown future."
Saturday, November 08, 2008
I'm a little mindboggled that he hadn't made arrangements in advance with the people he wants to see. I don't know how much it is that I've always been the one who needs to have things organized in advance and how much it reflects his difficulty now with getting things done. "Has John always been this way?" is a question that confuses me so much now.
Cell phones help--I don't need an itinerary in order to reach him. Next I need to reset his cell phone voicemail password (which he has forgotten) so he can listen to messages.
Thursday, November 06, 2008
Wednesday, November 05, 2008
- Nothing I can do will change the course of John's illness.
- Nothing I can do will bring John to peace or spiritual growth.
- Nothing I can do will give me back control over my own life.
It felt right to say those things, to lower my expectations of myself.
Someone recommended to me Learning to Fail: The Blessings of an Imperfect Life, by Phillip Simmons, who had ALS. He writes in the foreword:
When we stop seeing the world as a "problem" to be solved, when instead we open our hearts to the mystery of our common suffering, we may find ourselves where we least expected to be: in a world transformed by love.
Tuesday, November 04, 2008
It was an interesting experience for me because the doctor was taking the approach that John's Parkinsonism was mild and he didn't yet show all the signs of Lewy Body Dementia. John's response was to argue with the doctor that he is more impaired than the doctor realized (John had been working on his Social Security Disability appeal so he had been thinking in those terms). For me, having John acknowledge what I'm finding hard outweighed having the doctor ignore it. The doctor just didn't seem to be interested in subjective experience, only in the measurable symptoms. He made a big deal of how smart John was (having read the neuropsych testing report from May) as if he didn't expect to see Parkinson's patients who are smart. I finally said if John was 80 we would think he was doing great but this isn't what we expected at 63.
At the beginning of the appointment a nurse took John's vital signs and medication information and then sent him back to the waiting room. The doctor himself came out to the waiting room to get John and introduced himself to John. But the odd thing was that the doctor didn't acknowledge my existence when I got up and walked with John. Initially when he asked John questions I didn't speak up because I thought it important for him to see where John got confused. But he never did ask me for my perspective, though I did start giving it anyway.
Sunday, November 02, 2008
Another friend of John's seems to get it, but I’m scared to ask him what he thinks. A few of my friends say “how awful!” but then I don’t know what to say. How to live with grace in a terrible situation without denying how bad it is? I don’t want to make it look easy but I also don't want to just say "woe is me."
Of funds that the Diabetes Research and Wellness Foundation raises, in fact 92.2 percent goes to program services and only 6.5 percent for fund raising. Its highest paid officer earned $93,221 in the most recent year for which data are available.
The ADA by comparison puts 76.2 percent of the funds that it raises into programs, spending 20.2 percent of its income on fund raising. The ADA rewarded its CEO with a salary of $383,843 in the most recent year for which data are available.
The JDRF comes close to the Diabetes Research and Wellness Foundation in the percentage that goes to program services, 86.1 percent and in the small amount for fund raising, 6.7 percent. However, its CEO is certainly well compensated, taking home $616,875 in the most recent year for which data are available.
The Diabetes Research Institute Foundation has good fund-raising numbers too. Of the funds that it raises 83.2 percent goes to program services and only 11.1 percent to fund raising. Its CEO did earn a handsome $446,373 in the most recent year for which data are available.
The Joslin Diabetes Center used 80.2 percent of the funds raised for program services and only 4.9 percent for fund raising. Great numbers. But it also paid its top people awfully well, one of them taking home $660,569 in the most recent year for which data are available.
Saturday, November 01, 2008
John wasn't ready at the time we had agreed we would leave on Friday--we got off half an hour late and missed our first teacher appointment (which we were able to reschedule). John did make an effort to do better Saturday--when we decided we needed to leave our hotel at 7:30 am he arranged for a wakeup call at 6. It really does take him that long, even without taking a shower. We did get off at 7:45 (which we had allowed for in saying 7:30) to get to the school for more teacher conferences.
I feel like John is not quite on target in that kind of social situation but not seriously so (and it never was a strong point of his). He doesn't go totally off topic but a good bit of what he says isn't really to the point.
Thursday, October 30, 2008
John is not a very reflective person and is determined to make the best of his situation, so he doesn't seem too depressed by his losses. I wonder if he will be at a later point.
Wednesday, October 29, 2008
But I also ran 3 miles and cooked a nice Thai green curry for dinner and I've spent this evening catching up on email, much of it not work related.
I'm not as stressed as I might be because I feel I have done everything I can. I am somewhat stressed by not having a decision. There are only two more school days before students start to register for courses for the spring, and I don't yet have a decision whether we can offer half the courses we have scheduled. And I'm sad that the program I have built and really believe in may go down the tubes.
Tuesday, October 28, 2008
I finally came to more understanding of the situation while talking to my spiritual director this afternoon. This is a stage where John can still do things but needs lots of coaxing and help from me. It is a particularly hard stage for me, because it would be easier just to do many of these things myself. Also, for me helping someone else takes a lot of emotional energy. For example, I have to say aware of whether he does a task I have reminded him of and decide when would be a good time to remind him again or how to try to get him started. This isn't a stage that fits my strengths but it is where we are at--we are not yet to the stage where it is appropriate for me to just take over (which will actually fit my strengths better).
Monday, October 27, 2008
I asked John if he would share responsibility for Christmas and he said something that sounded to me like "if you tell me what to do." I said I would be glad to discuss issues, but I didn't count it as sharing responsibility if he waits for me to bring the subject up, decide what needed to be done, and tell him what to do. He said he would try.
I'm not sure any of this is going to work. But I think it is worth a try. In Families, Illness, and Disabillity, John S. Rolland writes that
Both partners need to realize that sustaining intimacy depends largely on establishing viable caregiving boundardies. Even the strongest relationships are strained by the ambiguities and discrepancies in shifts between two forms of relating: patient-caregiver and equal partners.And that: "one of the key tasks of the chronic phase" is "maximizing autonomy for all family members given the constrains of the disorder." (pp. 245, 247)
Sunday, October 26, 2008
Today I got done two tasks that I had put off for months--revising a professional article and buying air tickets for a Christmas trip. In both cases I was afraid that there would be problems because I had put the task off so long, but they went smoothly. So I got away with being gentle with myself, not forcing myself to deal with those things earlier. I felt "I do what I can do."
I really don't know how much is reasonable to expect myself to be able to do. John can still take care of himself, though I have had to take over a lot of family organizing. My time isn't terribly full (particularly if I count the work time I could use for writing projects). But knowing the situation we are in is such a drain on my emotional energy. I think I have let go somewhat of trying to plan too much for the future, but I tend still to be braced for something bad to happen. How can I let go more of wanting to be able to predict my days and be more flexible to take advantage of what opportunities I have?
Saturday, October 25, 2008
I got home at 2:30 to go up to our son's school for a 4:30 appointment. John wasn't quite ready but the main reason we were late was unexpected traffic, due to accidents in the heavy rain. Driving up John asked confused questions about several topics. Finally I asked him if he knew of a reason why he was having a bad day. He said he didn't know the reason but he certainly was. We did enjoy the play our son was in: "The Complete Works of William Shakespeare, Abridged."
While we were driving, John and I did have a conversation about death, which feels valuable to me as a way of being on this journey together. I had sent him a link about Voluntary Stopping of Eating and Drinking but he hadn't read it. I am interested in the philosophical question--if one believes in leaving death in God's hands then what interventions can one refuse? A feeding tube? Antibiotics? IV fluids? Food and fluids? It seems to me very hard to draw a line. John commented in several cases that he thought that would be a painful way to die. I said research suggests it is not painful for the frail elderly, but I don't think he was convinced. I have the text of a couple of articles on that--email me (pam55sc at gmail) if you want them.
Thursday, October 23, 2008
Tuesday, October 21, 2008
John commented when we got to the school how fast these three plus years have gone. What strikes me is how our son has grown up. He has learning differences that he inherited from John but he seems to be finding his way.
Monday, October 20, 2008
I have an image that the middle ground is a ridge with a slippery slope on either side. So I need a way to chisel out steps, flat places where I can have a more stable middle ground. My first thought of how to do that is to make a list of what is my responsibilities and what is John's. We talked about it some over dinner and he agreed with the principle that whether he does exercise and activities that will help preserve his quality of life is his responsibility. So I started a list as a shared Google document.
Sunday, October 19, 2008
How to settle down to living here? I wonder if it is possible to sit down and discuss with John what he can do and what I will do. I will take care of finances and family plans and remind him of those things. I will go to doctor’s appointments with him. When he asks me to, I will take over his bills and organizing his medications. He is responsible for his things and for the day to day matters of his health, such as exercise, and for finding the things to do that make his life worthwhile.
Saturday, October 18, 2008
A really good article on dementia and violence.
A story about grief on video.
I'm in Chicago for my first convention of the Well Spouse Association. I got in a little late for dinner last night, but people were very friendly. The first workshop I went to this morning was on Tear Soup. They had trouble getting the video set up so we first went around the large group and told our stories and what we were grieving. So much in common. Then we did get to see the Tear Soup video, which is very good. Then I went to a workshop on self-identity in caregivers, where we had to keep being brought back to talk about ourselves. After lunch I went to one on How do we cope? for those with kids. We were a small group but we had kids around the same age and it was really helpful. People headed off for tours of various attractions in the afternoon but I decided that what I needed to do to take care of myself was to have a quiet afternoon. Feeling a little teary about being with people who get it.
Friday, October 17, 2008
Thursday, October 16, 2008
Wednesday, October 15, 2008
John was very drained when it was over but he seems to be feeling better now.
Tuesday, October 14, 2008
From what I've heard, it makes IMFL look hilly. The low spot is near sea level, the high spot is +38ft.Registration opens in early December.
I thought things are settling down with my husband and it is time for me to focus on doing things while I still can. But I just had to cancel plans for tomorrow because he has bleeding in his eye tonight and I need to take him to the doctor.
Reading the book on Families, Illness, and Disability over the weekend I had focused on the idea tha we are out of the crisis/adjustment stage now and I need to change my approach to focus on the long haul. I started to think about what do I want to get done while I still can, and this morning I was seriously thinking about signing up for an Iron Distance triathlon next fall (signups don't open until early December so I don't have to decide yet). And now here we are back to crisis mode--not a big crisis but I've cancelled several appointments tomorrow so that I can take John to the doctor.
Monday, October 13, 2008
This coming weekend is the Well Spouse Association meeting--I hope that will be more helpful.
Sunday, October 12, 2008
The interesting immediate example of family patterns is that this weekend my mother was more positive about John, now he is ill, than she has been in the past. She and John went and picked raspberries while Elizabeth and I worked on her laundry.
What I like best in the book is not the theory but the case studies and the questions that Rolland suggests asking families. For example, in the chapter on intergenerational patterns he suggets asking families about previous experience, about:
What would they want to do similary or differently? Are there aspects of the current situation that they feel confident, insecure, or terrified about?
I feel terrified that at some stage John will want my attention constantly. But the book is helping me see that now is the time to make a transition from the crisis (or at least acute adjustment) stage to an early chronic stage where I have a last change to pursue my own goals while I still have the opportunity and can encourage John to have as much autonomy as possible and take responsibility for his own choices.
Thursday, October 09, 2008
We are staying with my mother, who is impressed by how cheerful he is. She says he seems more engaged. I said I think a lot of that is the benefits of Alzheimer's medication (I think she should try taking it fairly soon).
Wednesday, October 08, 2008
“The main task for a person with Alzheimer’s is to maintain a sense of self or personhood,” Dr. Williams said. “If you know you’re losing your cognitive abilities and trying to maintain your personhood, and someone talks to you like a baby, it’s upsetting to you.”Dr. Kristine Williams quoted in an article in the New York Times
I'm wondering what it means to maintain personhood. Does that have to mean maintaining the ego, continuing to be the same person? Or can I somehow still be a person, still enjoy looking at clouds, even if that "who I am" I built is slipping away? My grandmother died of Alzheimer's, the long slow way, and my mother is showing signs, so I see these isses as ones I will face myself as well as with John.
I don't know if Dr. David, is thinking in those terms, but his blog about his experiences as a physician diagnosed with LBD is moving.
Tuesday, October 07, 2008
Monday, October 06, 2008
I wanted John to hear my feelings that there is no way he could end his life without it being physically and emotionally messy and terribly hurtful to me and our kids. The thing that did get through to him was that I would feel rejected by him.
He talked about the death of his parents when he was in high school and college. His father died unexpectedly of a heart attack, his mother died a lingering death after a car accident. Both were horrible experiences for him. I don't think he can believe that a peaceful death is possible. He also does not accept the idea that he could have quality of life when he is no longer himself. I spoke of how I have come to understand facing our own deaths as a period of learning to give up control and trust God, but that didn't mean anything to John.
The pastor believes that my views and John's are two positions on a continuum of possibilities and if we keep talking we can come to a shared position. I asked John if he was open to the possibility of changing his view and to my surprise he said yes. I said I was open to changing my view (I do believe in theory in his right to make his own decision). But it is hard to imagine a shared position because there is likely to be so large a gap (I'm guessing three years or more) between when he goes past the point of being able to end his own life and when death can come naturally by withholding treatment. He doesn't want to live in that condition.
Sunday, October 05, 2008
He has several friends he keeps up with, but he has no interested in being involved in groups and committees. The problem tonight may in part have been his difficulty with hearing when there is background noise, though it wasn't a large group. I asked him a month or so ago if he wanted to get trained as a poll watcher and he said he had been thinking he would like to do that, but he didn't follow up on it.
I supposed that responding to people in a group may have the kind of complexity that he doesn't want to admit is hard for him. But his lack of any interest in being in community concerns me. I'm an introvert, but I believe in the importance of having community.
Saturday, October 04, 2008
So after a lovely bike ride with some friends this morning, I've been working through some piles of my stuff in the bedroom. But I've been working for five or ten minutes, then reading blogs for a while, then working on other projects (including my son's laundry). It isn't efficient but it is nice not to feel pressed, to work only as long as I feel like. I've gotten some things done that I've avoided for a long time.
But what should I do with this??
It is a costume I made for a ritual I did probably about 8 years ago (I wore bike shorts underneath). That ritual was an important first step in coming to accept my body. If I hadn't done that work (and followed up with a movement therapist for a couple of years) I wouldn't have been able to transform myself when I was diagnosed with diabetes and become an athlete.
I don't have any pictures of the ritual--I have the costume and a long scarf I made (five 3x3 ft. thin silk scarves sewed in a line into a rainbow). I suppose the scarf is enough to remember it by but it is hard to let go of the costume.
We don't have to clear the rooms--I asked the contractor and he said anything that is in the way of the workers they will box and moved out of the way. But I'm trying to clear off the stuff piled on my dresser and bedside table. I'm about 1/3 done. The work starts Wednesday but they probably won't start on our bedroom until Thursday.
John agrees that we should have the other ceilings painted and he says he intends to clear his piles of stuff out of the way. But he has hardly started. I am very thankful that it isn't our responsibility to get stuff out of the way--I can just let his stuff be his responsibility.
Thursday, October 02, 2008
Today she was very pleased with my numbers. My A1c is back to its usual excellent level (5.6), my LDL was lower (still somewhat higher than recommended but with an HDL of 78 I refuse to worry about it much). I also reported that while it is still hard I don't have days when I feel hopeless.
I actually give a lot of the credit to the supplement I am taking, which lowered my fasting blood glucose 20 points (from a high level due to stress back to my usual level) and seems to take the edge off the depression. My exercise is also back up some from what I had time for in the spring and I am being careful to stick to my low carb way of eating.
The doctor asked me if I was worried about my weight. I said I've tried to take the attitude that if an extra 20 pounds is what my body wants to get me through menopause with nothing more than mild hot flashes, that is fine with me. But I've gained some more from stress and I am disappointed that it hasn't come off when I brought my A1c back down. I don't believe in dieting (see this for why) but I wish I could go back to the weight my body settled at when I started controlling my blood sugar (which was at the top end of the normal range for BMI).
After I talked defensively for a while the doctor said: "I'm not worried about your weight, I only asked if you were worried. If I were you it is the last thing I would be concerned about; I wouldn't even weigh myself." It was such a good feeling to hear that from a doctor, particularly one who was also telling me that she was very pleased with how I was doing in other respects.
Wednesday, October 01, 2008
Tuesday, September 30, 2008
Today a representative of the disability insurance company, Met Life, came to our house to interview John. For two hours! It was a friendly enough interview, but exhaustive about the history of John's illness and the work he used to do. The representative also took pictures of John. The representative seemed to get that the biggest issue is slowness, but I still worry that John doesn't look that disabled. John did have to struggle a little getting in and out of a chair. But he made a big point of how he his thinking is not impaired. He did get confused a few times but nothing that would strike the average person as really odd. I hope that the insurance company doesn't try to kick John out of disability coverage. He only gets two years coverage, until he is 65.
Monday, September 29, 2008
Thursday, September 25, 2008
I am off to a retreat for the weekend at a place that has been an important spiritual home for me. They have decided not to take guests any more after this weekend. I hope this weekend I will be able to grieve that loss.
Wednesday, September 24, 2008
At a session we both had with the therapist today, John said that he doesn't want to end up bedridden or not recognizing anyone, he wants to end his life when he is reaching the point of no longer being competent (which we both expect is a number of years away). My own beliefs lead me to discourage that but in the end to respect his decision if that continues to be what he wants; I realize that other people have other beliefs. He doesn't expect me to assist him and I don't think I would be willing to go there. My question for this group is whether people commonly carry that intention out, or whether it is much more common to have that intention and not actually carry it out. I'm guessing that I can't plan on it actually being what happens.
Confused feelings have been churning in my mind, and I was brave and asked for help, called a friend/pastor and arranged to meet her at a coffee shop this evening to talk. She actually turned out not to be the best person to talk to because she knows too much and so I felt pushed. She ran a suicide hotline for three years and has experience of several other sorts. She believes that we can talk about it as a family and come to a decision that we all can accept. But right now where I am at is that my emotional reactions and my intellectual beliefs are so contradictory.
Sunday, September 21, 2008
We are only six months from John's diagnosis, and maybe in a year and a half I will be in a positive place the way she is. But I doubt it. We went to a Parkinson's Disease Foundation educational conference last spring in Charlotte and it was clear to me that there aren't any big improvements in treatment in the pipeline, at least in the next five years. Medication has helped, and John is doing well. But I see the signs of how it will get worse. I doubt that in a year and a half he will still be able to travel alone, though I could turn out to be wrong about that.
I do want to get better at enjoying what we have while we have it. But I don't think denial would work for me--I would get angry at what John can't do. And I want to prepare for the future.
Saturday, September 20, 2008
I'm having trouble wrapping my mind around the news. What attracted me so much to the place was the sense of continuity--that when I left after a retreat they were still there chanting the services four times a day. They recently finished the multi-year job of publishing their breviary. I'm shocked that continuity can disappear so suddenly. Cintra's sermon gives me some way of making sense of it.
I have signed up to go to their last retreat, next weekend. I hope that will give me more understanding and some closure.
It is nice to have my time be my own, but I've forgotten how to shape my days in that larger flow, knowing that I won't be interrupted. I could schedule myself but I don't want to be rigid about it; I just want to think about my time in larger chunks.
One think I would like to do is some house organizing, but I find even more of the piles than I realized are John's stuff. I so want to have him have his own part of the house for his chaos. The problem now is that when I clean an area up he takes it over and piles his stuff there.
Wednesday, September 17, 2008
A year an a half ago I had urged John to get a sleep study, because he would occasionally gasp and snort as if he was struggling to breathe. That study showed that he was having 3 apnea episodes an hour--not frequent enough to need treatment. The doctor said to come back in a year and see if it had gotten worse.
By the time John got back, our key concern was not the sleep apnea, but the REM sleep behavior disorder (RSBD). A year ago John was waking me up every night crying out in fear or anger in his sleep. He hadn't hurt me, but he had hit at me a few times and I didn't feel safe. He had been taking Imipramine to help him sleep and the Movement Disorder Specialist wanted him off that because it makes the RSBD worse. John wanted a substitute medication to help him sleep and the specialist said he should see a sleep doctor for that. The medication most often used for RSBD is Klonopin (Clonazepam), which would help him sleep but can make sleep apnea worse.
John didn't think he could do without a sleep medication (in addition to Clonidine) but he ended up weaning himself off the Imipramine about a month before the sleep study. The RSBD became less of a problem because I started moving to another bed as soon as he woke me, but also became less frequent once he was off the Imipramine. The sleep study showed less apnea than a year and a half before. The sleep doctor started focusing on telling John he slept ok even in the sleep study, he should just try to go to bed within 30 minutes of the same time every night.
I pointed out that our main concern had been the REM sleep behavior disorder. That hadn't showed up in the sleep study, which the doctor thought not surprising. I do think it has lessened considerably (though I still move to another room because of John's snoring). We agreed that if it wasn't bothering him or me it didn't need treating, but John asked for and got Klonopin for occasional use when he does need something to help him sleep.
Part of the confusing thing about evaluating cognitive function is that it is relative to where you start. John started in a place where he could lose some function and still be above average in verbal skills.
Tuesday, September 16, 2008
John is safely in Washington DC and I am enjoying the quiet.
Monday, September 15, 2008
This evening it was about 5:30 pm when we got home from the sleep doctor (plus a trip to the supermarket because John was going to cook but hadn't bought anything). He remembered suddenly that he needed to get his prescriptions filled before his trip. He started gathering prescription bottles, and I said "Do it from the list I made up, not from the bottles." He said no, he didn't trust the list, he wanted to do it from the bottles. I said "At least check the bottles against the list on the computer."
When he had left for the pharmacy I checked the bottles he had left on the table and found that he had called in a medication he has stopped taking and not called in his Sinemet. I called the pharmacist and corrected the error. This is a small town pharmacy owned by two pharmacists, so the pharmacist knew who I was. He even started to tease me that they don't take corrections, but I said "This is a tense subject at our house: whether John can manage his own prescriptions."
When John came home and we were eating dinner (which I cooked), I asked him if it was time for me to take over getting his prescriptions. He said no, not at all. I asked him what he was going to do differently the next time, and he said be more careful. I said that wasn't enough, that he needs some strategy such as using the list on the computer or at least keeping his current prescription bottles in a separate place instead of in a tray with many old prescription bottles. He didn't say anything to that.
The mistake would not have been a crisis, as he had enough Sinemet left for his trip. But I had worked it out so all of his prescriptions can be filled at the same time instead of spread out through the month, and I would hate to have him mess that up.
I think to him managing his own medications is as important a part of his sense of control as driving is. I don't think he is messing with them in any dangerous way, just occasionally taking an extra one of the Clonidine he takes to settle his ADD so he can sleep. But he has some system of three bottles of each medication that he doesn't want me to simplify. So I guess I will let it go--hopefully before it gets to be too much of a mess he will be willing to admit he needs help.
Sunday, September 14, 2008
In fact, I didn’t vote for Jimmy Carter when he ran for a second term because I couldn’t bear his response when he was asked whether it was fair that poor women couldn’t get abortions because Medicaid didn’t pay. He said “Life is unfair.” No! If something is unfair, try to do something about it. My hero is Paul Farmer (who runs a medical clinic in Haiti) because he isn’t willing to accept that the world is unfair, he takes action to make it different.
My struggle now is with having to do more than my share. Instead of appreciating the small things that John does do, I fall into resenting that he doesn’t do more. It isn’t fair that I do lots of little things (like installing an arm rest we bought for his car) because he is so slow or might forget or will take weeks to get around to doing it. It isn’t fair that I have to handle all financial decisions and all family travel. It isn’t fair that I have to handle the major house issues. And then John talks to a contractor who comes to the house and thinks he is doing his part. Sometimes I wish he wouldn’t try to help, either because he makes too many mistakes or because I don’t want him to get credit for helping when his help doesn’t reduce the burden I feel. It is the responsibility that makes me feel most burdened, and now I have the added responsibility to double-check everything he does.
I don’t want to be like this. We went to Atlanta yesterday, food shopping and out to dinner. The trouble is, I noticed how he messed up when I needed directions more than I enjoyed getting to some favorite stores and eating Vietnamese food. It is childish to keep thinking: “It’s not fair!” But how do I convince the part of me that has worked so hard for fairness that it isn’t important any more?
Friday, September 12, 2008
How much of me is going to be left, after what I am guessing will be 10 years of caregiving? I’m hoping not to have to give up my job, but I worry whether that will work. Right now John is pretty functional, and yet I already feel my freedom to follow my own path has been taken away from me.
A priest suggested that I ask myself where I would have hoped to be in 10 years if John hadn’t become ill, and then see if there was any small part of that dream I can hold on to. I would hope to have written a more important scholarly book and to have served a term as president of one of my professional societies. I would hope to have done an Ironman triathlon. I would hope to have built the program I run into a major. I would hope to live a simpler life, to have reduced chaos in my house and made my life more peaceful.
I guess I need to take that last one more seriously, because it is the one I can have. And in fact we are making plans to move in a year to a smaller house. As the appraiser commented today, the problem with a house with lots of storage space is that one accumulates lots of stuff. I keep clothes because they are classics or because I might wear that size again. I keep books because isn’t that what one does with books? I stock up on food and office supplies so I will have on hand anything I might need. I keep bills and bank statements and the like because it is too much trouble to sort out what should be kept. I keep china and decorative objects because my kids might want them. I need to change my thinking.
A friend’s mother used to tell her: “Someone else could be enjoying that right now.” Instead of holding onto things because I might need them in the future, I would like to learn to let go of anything that I haven’t used in years. I imagine that doing so is a step on the road towards becoming a person who radiates peace.
Thursday, September 11, 2008
Today we went through the house we want to renovate with the maintenance person for the realty company and a contractor he knows. It keeps getting more complicated. No serious problems, just lots of choices. For example, they recommend Konecto floating vinyl flooring instead of laminate flooring.
Tomorrow an appraiser is coming to look at our current house. I have had a couple of people express some interest in it, and I would love to sell it privately rather than through a realtor. The first step is a good, fair appraisal. Not easy in this market.
John is showing some interest in it all, but I still feel burdened because I am afraid of making mistakes.
Wednesday, September 10, 2008
John and I met with the therapist Monday and I brought up how John is drifting, which he acknowledged. I asked him about what he wanted to get done, and he said first of all work on the historical research project he wants to do. I asked him if he wants to make a commitment to more exercise, and he said no. He takes a half an hour walk most days, goes to physical therapy once a week, and occasionally does the exercises at home. I wish he would go to the Silver Sneakers exercise classes that work on strength and range of motion.
I pushed him that he should start organizing and writing out information on his family heirlooms, and he said "give me two years before I start." I said we can't count on him still being able to do it in two years. I want to get rid of stuff, while he feels it is his connection to his family. I'm happy to keep things for the kids, but it isn't going to mean anything to the kids unless he writes down the information.
I asked him what he would do differently if he only had six months to live. He couldn't think of anything.
Sunday, September 07, 2008
Update: I got a copy of the paper. The word is "attunement." He writes:
An “ecological” democracy would require that we learn to pay attention to what nature is saying to us: both by awareness of scientific knowledge and by a personal and collective process of attunement to plants, animals, and even ecosystems. By analogy this may not be totally unlike the attunement required for communicating with the severely handicapped, partnering with domesticated animals, or practicing truly sustainable agriculture. It may remind us of what political justice would look like between cultures so essentially different that they could not argue for their own interests in terms the other could understand.
Saturday, September 06, 2008
I do like her honesty about the process of learning what she can do and what she cannot manage, coming to terms with her husband staying in a facility. She says she couldn't bring her husband home: "I wouldn't be Rich's wife; I would be his jailor and my own. This was a sacrifice that made no sense; I couldn't do it." She says it took her years to be able "to say the words I want to live my life without feeling unnatural, selfish, cowardly."
What seems to have brought her peace was feeling that her husband would have more appropriate (specialized) care at the facility than at home. I wish I thought that was usually available when needed.
Friday, September 05, 2008
If anyone is interested in the journaling workshop I have been doing, there is a new group starting October 14. The cost is $100. The information:
What: Join us for a five-week journaling workshop conducted through e-mail. Relieve the stress of caregiving and share. We’ll only say what we love in the writing.
Where & When: Offered through group e-mails, starting October 14, 2008 & January 13, April 14, July 14, and October 13, 2009. E-mail Lgood67334@comcast.net for information.
Why: Caring for oneself is as essential as breathing, but caregivers lose site of that fact. Journaling is a caregiver’s oxygen mask.
Who: Instructor B. Lynn Goodwin is a veteran of six years of caregiving, a freelance writer and editor and a former college and high school teacher.
Contact: B. Lynn Goodwin, Lgood67334@comcast.net. Put “Journaling” in the subject box.
Curious? Want to see if this would work for you? If you have not been in one of my groups, cut and paste 15 to 1500 words of your journaling into the body of an e-mail and send it to me. I’ll tell you what I love and what stays with me.