John got disability retirement from his job, and he had private disability insurance, which has come through. He has also applied for Social Security disability, but we don't expect the first word on that until December.
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.
LEWY BODY DAILY JOURNAL
This is the story of Pam and John; she in her early 50’s and John is 62. Pam is a college professor. John taught at a local community college until diagnosed with Parkinson’s in March 2008, then Lewy Body Dementia in April.
Tuesday, September 30, 2008
John got disability retirement from his job, and he had private disability insurance, which has come through. He has also applied for Social Security disability, but we don't expect the first word on that until December.
Monday, September 29, 2008
I went this evening to our local Lewy Body Dementia support group. The organizer and I were the only ones to show up. We talked about how we might find more people. The local Alzheimer's association does let people know about the LBD support group--that is how I found out about it. She thinks the problem is that doctors in the area are not diagnosing Lewy Body Dementia. I suggested then maybe we should organize it as a Parkinson's support group with caregivers meeting separately. The closest Parkinson's support group is 30 miles away and meets in the early afternoon.
Thursday, September 25, 2008
I told John that he may believe that ending his life (he is clearly talking about some years in the future) would be the right choice for him, but he should not believe he is doing it for his family. I am confident I am well on my way to knowing how to care for him through Lewy Body Dementia, to a natural death, without it being emotionally or financially devastating. He said he wasn't convinced that was possible. I gave him a couple of examples and what seemed to make the most impression on him was my confidence that even if he got violent that could be controlled by medication and after a while he would come out of that stage. Sometimes I feel that reading the Lewy Body caring spouses Yahoo group means I know too much too soon. But here that knowledge was valuable.
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
I'm going to repeat what I posted to the Lewy Body caring spouses group because I don't feel very safe writing about this and I got a supportive response there.
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
I spoke with someone at church today whose husband was diagnosed with Parkinson's two years ago. He is now doing so much better, and she wanted to tell me not to be discouraged, that if we kept trying we will find medication that will really help. She was hopeful for a cure and said the doctor told her husband he would die of something else.
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've always liked alone time, so I was surprised when I realized I was feeling a bit at loose ends with John away for a week. But I'm so used to having my time not be my own, between kids and John. Now my kids are away at school and this week John is away (Tuesday to Tuesday).
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
John says that he is very tired after spending the afternoon reading microfiche and isn't doing much else during his time in Washington. I'm impressed he is still able to spend hours reading microfiche--that is hard for anyone. They do have new machines at the Library of Congress that instead of paying for a photocopy will email a PDF of the selected page, so he doesn't have to take notes.
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.
A belated report on our appointment with the sleep doctor on Monday.
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.
Tuesday, September 16, 2008
I went to the Human Resources department at work to clear up a last financial question. I wanted to change my beneficiary so that if I should die before I retire and John is still alive, my retirement benefits would go to our kids instead of to John (this has to do with getting things out of his name in case he has to go on Medicare). I was worried that because they are young they would get a trivial amount per month. Instead, I was told that if they get the benefit they split a monthly benefit for their lifetimes that is 3/4 of what John would get per month. So they would get a lot more over their lifetimes.
John is safely in Washington DC and I am enjoying the quiet.
Monday, September 15, 2008
John is going to Washington DC tomorrow. He will be flying there and taking public transportation once he gets there, and he will be staying with my aunt, so I am not particularly worried about the trip.
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
I’ve always been someone who considered fairness important. My mother’s mother favored her brother; my mother compensated by being compulsive that everything should be divided equally. I don’t think that is always the fair approach, but I do value fairness very much.
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
For the last week of the journaling workshop, we are supposed to write about reclaiming ourselves.
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
Yesterday we met with a contractor sent by the insurance company about our leaky roof. I'm convinced he figured out what the problem was, and he thinks the insurance company will pay for fixing the roof as well as the damaged ceiling. But they are going to have to redo part of the roof and replace drywall to repair the ceiling, so it is going to be a mess.
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
I helped host a visiting speaker Monday and Tuesday and I've been going non-stop. Today was nonstop until about 7 pm, but after dealing with a contractor about a roof leak I did get in a hilly bike ride with a friend, and I feel much better.
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 7, 2008
I attended a conference on environmental ethics this weekend. This morning I heard a talk on “Nature’s Voice and Human Flourishing: The Possibilities of Ecological Democracy” by Roger S. Gottlieb. Gottlieb wants to imagine a democracy that includes participation by non-human life, and so he spoke about how we can communicated with other living things even though we can't argue with them. He had a phrase I liked and thought I had written down, but I don't find it in my notes. It was something about how we communicate by aligning ourselves with the other. It struck me as an important seed for me, to think about communicating without words. Trying to imagine what it would be like to be John doesn't get me very far, because I would react so differently if I were in his situation. But I'm beginning to develop my sense of what he would want.
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 6, 2008
I'm reading A Three Dog Life, by Abigail Thomas. Her husband suffered a traumatic brain injury, which left him unable to care for himself and psychotic. She writes about how her life changed and about her dogs. To me, her story seems a bit muted, with the dogs for light relief. I would have liked to hear more of the raw pain. But that is me; I suspect what she provides is all that most readers want to hear.
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 5, 2008
I found a new support organization, which I am very hopeful will help me feel less alone. It is called the Well Spouse Association. I've been wishing I could connect with other caregivers who are below retirement age and caring for spouses, not parents, and I think this organization is where I will find them. I'm even tempted to go to their conference in Chicago in October.
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.
Thursday, September 4, 2008
There are a lot of complexities we have to deal with these days--what do people do when they can't manage? A friend was worrying about that, concerned about what she will do when her aging father can't help her with the things that she can't manage for herself after treatment for brain tumors and lung cancer. The latest is a large erroneous charge on her cell phone bill.
John said his 96 year old aunt isn't going to work on adding me as a backup for her power of attorney right away because she is struggling with her quarterly taxes. What happens when she can't manage her taxes any more? John and I pay someone to do our taxes, but there is a lot of work that has to be done to ready the material for the tax preparer. I'm getting close to taking over the last of the billpaying from John, because it bothers me he hasn't gotten doctors bills paid. I can handle his and my financial life, but I can't imagine dealing with his aunt's as well. He certainly can't manage hers. My mother has a secretary who comes once a week to deal with bills and accounts, but not many people hire someone.
Wednesday, September 3, 2008
Another writing for the journaling workshop, on the topic: "The one I care for."
John grew up in Houston, TX, where both his parents were schoolteachers. He had difficulty both with learning disabilities and with not fitting in with his peers, but his mother gave him a lot of support. His father died when he was in high school, his mother when he was in college. He has one brother but they became alienated from each other when John was in high school and his brother in college.
After college John joined the army because by signing up for three years he could choose to go to the language school instead of being drafted and sent to Vietnam. He studied Russian, hoping to later do Russian history, and that specialty got him a posting in the Washington DC area. When he had finished his time in the army he did first a masters degree and then a PhD in history (though not in Russian history because he had found the language so hard). He was in his mid thirties before he got his first full-time professional job.
That job was as a historian working on a contract for the National Aeronautics and Space Administration. John and I met when he read an article I had published and called me up for help in getting started in space history. We build a relationship long distance. When his three year job ended he moved to South Carolina where I had a permanent job and we married the next year. He had lived alone for 25 years before we married. He struggled for several years in temporary jobs before landing a permanent job at the local community college.
His professional ambitions didn’t come to much after an article that took him forever to write was rejected. But that made our life a little simpler, as I had a good job and it would have been hard for me to move for a better job for him. We had kids and our first child particularly had several problems that needed treatment and it was a struggle to manage everything. Two jobs, two kids, and a house was a bit more than we could handle, particularly during the period when a lot of my energy went into healing childhood wounds.
Looking back, I’m aware of the fights I didn’t win. I said I was not willing to have guns in the house, but he has a couple of nonworking guns that he inherited and they are in our attic. I said that was unacceptable to me, but he wouldn’t listen. I tried to get him to stop listening to books on tape while doing things with the kids, but he wouldn’t. I asked him earlier this year to start reducing the size of his wine collection (to buy less than he drinks or shares) and he refused. He would say I don’t give him credit for the things he did change, for example not having the TV or radio on when I am in the room.
John often made mistakes and sometimes he would get overstressed and not cope well, but he didn’t get really angry and he never once threatened to leave me. I got frustrated enough with his mistakes and inefficiency to push him to be evaluated for ADD, but then he wouldn’t take medication for it (except for sleep, which did help). I thought of it as a marriage that was balanced because we each put up with a lot—he put up with my healing journey and I put up with his forgetfulness and mistakes. Occasionally I could hardly bear it, as when he forgot repeatedly to take our son to his piano lesson. Thankfully he almost never forgot to pick the kids up from daycare or school.
John was interested in hearing about my inner journey, but he always said while he admired my ability to listen to what was inside me and to experience the world spiritually, he didn’t have that himself. When I was on a journey very specific to my childhood experiences that made sense, but in recent years I have tried unsuccessfully to push him to find his own way to grow. He always said he was content with himself; he didn’t feel any need to change.
It has made my life easier to have a husband who is never dissatisfied with anything. But oh I have wished he would try harder, hold himself to a higher standard. I wish he would try harder to fight his illness (for example by making exercise a higher priority). But he doesn’t fight me, and I should be grateful for that.
Tuesday, September 2, 2008
We bought John a new car today, a Scion XD hatchback. It sits up a little higher than a sedan and the seat is more upright. For the first time since 1985 we don't have a minivan.
Toyota has a no haggle policy on Scions but I had printed out a blue book value for our trade in, which was considerably more than they wanted to give us. I made it clear to the salesman that we knew exactly what we were doing. John did the final insisting that we weren't going to compromise significantly on the price we wanted for our trade-in, and we got what we wanted.
Yesterday John made hotel reservations for our son's parents' weekend, only he made them for entirely the wrong weekend. But if I organize what he needs to do, he can still do things.
Monday, September 1, 2008
Someone in a group I'm in wrote about struggling to find meaning in caregiving. That sparked me to write some thoughts of my own, which I've edited to take out my replies to her.
How to find meaning? In my own personal healing journey I've been able to find meaning by giving back to others. We can do that in all kinds of small ways. I'm so grateful simply when I run into someone who understands how bad it is—today a couple of colleagues who witnessed a form for me.
Can we find creativity in the ongoing situation? Again I'm thinking of my earlier healing journey, where I worked through painful memories and felt such satisfaction if I could find a creative way to get the feelings out. Is there anything that we can make beautiful? Is there a sense that finding ways to make the ill person's life as good as possible is a dance? Weaving a peaceful place around the pain and confusion.
Feminists have analyzed women's work as not valued because the same tasks have to be done over and over again. It isn't like building something—you sweep the floor and it just gets dirty again. Caregiving is full of such work. Someone has to hold the forces of chaos at bay. Celtic spirituality seeks to find the holy in the mundane, but that isn't easy to hold onto.
I recently read someone who wrote that from caregiving she learned to have faith in herself that she knew best, no matter what other people said or thought. But how can we be less lonely?