vacation

We made it to Cape Cod yesterday evening, through remarkably light traffic. My family has a house here, and for about 15 years John and I and our kids have come here in June, before most of the rest of the extended family gets here and before the town gets crowded. It will be interesting to see what changes I notice in what John can do from a year ago. Yesterday when we picked up our daughter and had to deal with lots of family, he was doing a good job. So far what I have noticed here are physical things: carrying the bags up to our second floor room and making his bed were more difficult for him than in the past. If the second floor room becomes too difficult there is a first floor room that was my room when I was a teenager that we can use next year.

Thank you, Joann, for the idea about medications. The first time I tried to organize John's medicines, he wouldn't let me consolidate them because he said he wanted to have three partially full bottles of each prescription (one extra was for travel, the other was so if he dropped and spilled a bottle of pills it wouldn't be a full one). I bought him a weekly pill organizer and told him if he used that I wouldn't have to take over managing his medications as soon. He has now filled it a couple of times himself so I have hope he will continue to make the effort to use it. I will look into having the pharmacy do it for him, but I have a feeling he may not be willing to give up that much control yet.

Being positive

I remember having the thought that I need to find ways to be more positive, but I don't remember what I was thinking I would do. There are a number of things I am thankful for. I am particularly thankful that John is not in denial--that is a difference from when I pushed him to get tested for Attention Deficit Disorder (only when our kids were diagnosed and helped by medication did he begin to admit it fit him too). I am thankful our kids are away at school and not watching the adjustment process, and I am thankful they are doing so well. I'm thankful we aren't caring for parents too. John's father died of a heart attack when he was in high school and his mother from an automobile accident when he was in college. My father died suddenly of a stroke a few years ago and my mother is in excellent health (and one of my sisters lives much closer). I'm grateful for having gotten as far as I did with my own inner healing process before this hit, even if I am disappointed not to get the happier time I thought was coming.

Thank you

Thanks for all the support in response to yesterday's post, both in the comments and by email (pam55sc at gmail). It helped a lot. I'm going to start making a list of John's long-term behaviors that I think are making this harder (such as listening to books on tape all the time). I gave up on getting him to change those things long ago, and I doubt he will change now when he is becoming even more set in his routines. But at least if I show such a list to doctors they will understand more.

Yesterday was frantic getting ready to leave on a trip, but no disasters so far (except in trying to move things to a new laptop I may have lost 2 years of logs of my running, swimming, and biking). I had arranged for John to get all his prescriptions refilled at once, so hopefully he can't mess up what he brings if everything is already in one bag. I will be traveling the next few days so I may not post every day. I should have more time once we are on Cape Cod, at least until we leave on our big trip.

Neuropsychological testing

I guess that neuropsych testing isn't very reliable on college professor types. John's memory has always been bad and has gotten significantly worse in ways that really worry me. But in the testing he scored high average in new verbal memory and superior in new visual memory. The only thing he scored impaired on was basic spatial. He scored superior on higher language, average to low average on attention. His results were very randomly scattered from average to superior, but ADD testing from more than 10 years ago makes it clear that he was that way then too.

After the psychologist presented the results to us, I burst into tears and said: "Then why have I had to take over all the planning and organizing?" We talked about some examples and she said she could see it is frustrating for me, I should try to remember that John can't help it, it is the disease. I said "these test results seem to say he can help it." She said "No, no, no,..." without really explaining how she reconciled the test results and our experience (John was supporting me that it has gotten significantly worse in the last year). In part the psychologist was saying that he already had problems functioning in the areas I am frustrated about so it didn't have to get much worse to be a big problem. But the tests don't even show those problems he already had.

I guess I think he outsmarted the tests. Or perhaps it is an example of the fluctuations that are characteristic of Lewy Body Dementia or the phenomenon I have seen called "show time" when the person with LBD can rise to the occasion and look good in the doctor's office or for company when usually they are a mess. John presented himself as sociable and having a good support network when I see him increasingly isolating himself except for three friends and me.
Marc asked in the comments how John was diagnosed. Very much just by the clinical judgment of the doctor--clear Parkinson's symptoms plus REM sleep behavior disorder. John reported episodes of confusion, I reported difficulty with complex tasks, and in the doctor's office that day he couldn't spell a four letter word backwards. Is it dementia at this point? Not the way the term is casually used, but if dementia is defined as cognitive impairments that interfere with social or occupational functioning then it is--John could barely keep up his job through the end of the semester. Is it Lewy Body? He definitely has Parkinson's symptoms as well as REM sleep disorder and increasing problems with memory, organizing, and planning, so even if some doctors wouldn't diagnose it yet it is headed in that direction.

I'm very upset about the testing--even now the next morning the tears come up in my eyes when I think about it. I feel like the objective tests say everything is fine, when my experience is that we no longer have a partnership, I am now having to be a caregiver. I'm having to do all the thinking and planning and organizing for us as a family and for John with doctors. I'm afraid of being accused of overreacting. I'm afraid no one will believe me because the tests show something different. Not being believed is a particularly sore point for me. More practically, I had hoped the doctor would prescribe Alzheimer's medication that would help, but since he wanted the test results first will he decide medication is not needed based on these test results?

The other thing that upsets me is that every strategy the psychologist suggested was something I have tried to get John to do for years with no success. He won't make lists of things that need to be done. She told him that no way should he be walking around the house trying to get things done while listening to books on tape or All Things Considered on headphones, that he can't multitask. The only compromise I've ever been able to get him to make on that is to turn it off when I come into the room. We didn't talk today about sleep but that is another area where he has terrible habits he has been unwilling to change--these days when I get up at 5 am to go swimming I usually find him asleep sitting upright in a kitchen chair in front of his computer (never having come to bed). The sleep doctor is going to get an earful from me in July.

Lewy Body Dementia and Alzheimers

When I first started reading about Lewy Body Dementia, I was bothered that many web sites treated it as a variant of Alzheimer's disease. My grandmother died of Alzheimer's, the long hard way, spending several years bedridden and not recognizing anyone. She was a person who did harm to those around her even before the Alzheimer's hit, and the Alzheimer's made it worse for a while. So I didn't want to think that what I am facing had anything to do with that.

But I did read Learning to Speak Alzheimer's: A Groundbreaking Approach for Everyone Dealing with the Disease by Joanne Koenig Coste and it made sense to me. I'm now going to order The 36-Hour Day: A Family Guide to Caring for People with Alzheimer Disease, Other Dementias, and Memory Loss in Later Life by Nancy L. Mace. And I will at least try the local Alzheimer's Association support group. The issues are similar enough.

Last Friday I asked John, as he was heading off for his neuropsychological testing, whether he wanted me to reschedule one of his doctor's appointments for him. He is still making many of his own doctor's appointments (one of those things where it is hard to tell when to take over). He said that would be a big help. When I called the doctor's office they told me he had already rescheduled the appointment. I told him about that the next day and at first he still didn't remember doing it. When I told him the new date he said it was vaguely coming back to him. That kind of thing startles me--as he says, he has always had a bad memory but this is different. He used to lose track of things he needed to do, but if he as reminded he would have the details. Now he is just losing things. I tend to describe Lewy Body Dementia as something like a cross between Parkinson's and Alzheimer's only with less memory loss and more hallucinations. But John doesn't have hallucinations yet, and the memory loss is significant. I'm eager to see what we learn from the neuropsych testing.

organizing

Our son came home from boarding school a week ago and he and I, working an hour or so each evening, have gotten his room almost completely organized. It won't stay that way, he is ADD like his Dad and he tends to put things away by just piling them up. But for a while at least there is space to pile them, and even room for all his books on his shelves.

I wish it were as easy with John. He is proud of himself that he has actually gotten rid of stuff--five or six boxes of books and 15 boxes of documents (I found a graduate student who wanted those and came from Atlanta to pick them up). Some of the boxes of documents were on shelves in the unfinished part of our basement, and so when the boxes went I was able to put camping equipment that was piled up on the floor away on the shelves. The floor of the central part of the basement room was actually clear! I feel a big relief of stress when I see things in order.

It lasted two days. Then John brought home boxes and boxes of stuff from his office and put them in the space I had cleared in the basement room. He plans eventually to find space in his home study for the things in the boxes, but will that ever happen? He reports he is making progress on his home study. I am encouraging him to work on it with the student we hired to help him move. Even if there isn't that much that the student can do to help, I don't think John will make any progress without someone working with him to keep him focused.

I'm a naturally fairly organized person, but a full time job and small children and my own inner journey overwhelmed me and our house has been a mess for years. In the last year I've made a lot of progress on my part. But the very most frustrating thing is getting my stuff cleared off a table or countertop or getting a room into order, only to have John pile his stuff there.

He thinks I am overreacting because he has always been somewhat that way, and usually gets things done eventually (months later). I may be overreacting to what I see as intensification of patterns that have always bothered me, such as hoarding and difficulty with organizing, because I fear it will now get completely out of hand. There are four grocery bags of cans of soup on the floor in front of the shelves in a pantry area that have been there for months (in an area I cleared out six months ago). I suppose I know that isn't important in the larger scheme of things but I get so frustrated when I get things organized and feel a reduction in stress and then John ruins my organization.

As I read messages in the Yahoo LBD spouses group, what I see is an ongoing pattern that it is hard when the person with LBD is still trying to do something for himself but can't always manage it well. It gets easier in a way when they just can't do it, but I shouldn't be looking forward to that.

Worry

Barbara Crafton writes:

Planning and worrying aren't synonyms. Planning is developing strategies, which is a good idea. Worrying is experiencing pain in advance of its actual arrival in your life, which is not a very good deal.

Read the rest (Christian).

should we move?

Pearose makes an excellent point in the comments to the last post that it would be better to move while John still can learn the space.

We would move to another house in the same town, where I work, so it wouldn't get us better services. I would like to move back to the house we used to live in, which we kept when we bought a bigger house. It is rented to students so we probably couldn't start renovations until next summer. It has a finished basement that is ground level on two sides so you can walk in from a carport with no steps. That would be John's space. We lived there for four years when we were first married but John doesn't seem to have the good feelings about it I have. He doesn't want to move and have to get rid of stuff, while I want to move while he can still be of some help. I would like to move to a smaller house because it would force us to simplify, and I want a house where his disorganization doesn't take over the public parts of the house. Or would moving just be too stressful?

I need to find an expert to advise us on whether the lower level of that house could be made into a nice safe space for John. A friend recommended a pamphlet on such issues and then finding a Certified Aging-in-Place Specialist. The only person who comes up on that search in this area is a builder, so I'm not very hopeful. Another question for the Alzheimer's Association.

That thought finally motivated me to make the contact. I have so many negative feelings from my grandmother's dying from Alzheimers that it is particularly hard for me to identify with the Alzheimer's Association. But I got an email back almost immediately from the program director of the state chapter, who lives in the same town we live in. And she said that someone in the next town over is starting a support group specifically for Lewy Body Dementia! I was feeling no one in this area had heard of it. I am much relieved that I have found people who know what is available locally.

If the Alzheimer's Association has on-the-ground support here in rural South Carolina it should be helpful almost anywhere in the US. I recommend searching by state (click on the map to get to the web page for your state chapter)--their zip code search did not give the office closest to me.

focusing on the future

In a group I was in yesterday, someone said: "Don't be anxious, God has a plan." Or from Exodus 14:14: "The Lord will fight for you, and you have only to keep still." (New Revised Standard Version)

I am anxious about the future. One of my reactions to the diagnosis was that I want to spend six months getting things in order, before focusing just on living in the present and taking advantage of the time we have. I've actually made some progress. I met with our lawyer and found the only thing I needed to do was to change my power of attorney from John to my sister. I haven't started working on the question of whether we should stay in this house or move, but I've got some idea of what the next steps are. We are making progress in getting our financial affairs in better order. The financial planner is looking into an impaired risk annuity for John's retirement savings. I just heard that I was approved for long-term care insurance at the preferred rate--too late to get it for John but I now have it for me.

But I can't imagine what I will do when John needs full time care. I thought I could do some research and at least understand the options, but I'm not finding decent options. I don't want to retire. There is adult day care in the area, but I wouldn't be able to get him up and there and still get to work at a decent hour--I'm an early riser and he isn't. If he needs more than a sitter, full time care at home is likely to be too expensive. The local nursing homes don't have separate dementia units. I hear the closest nursing home with a good dementia unit is in a city 40 miles away. I guess it is time to call the Alzheimer's Association, as the most relevant organization that is actually on the ground here.

not losing myself

The most common thing people tell me is to take care of myself, not give up the things I do for myself. That comes naturally to me, I put a lot of importance on the things I do for myself, but I feel so much more hemmed in.

Yesterday I ran four miles on the track in the early morning, then did some work by email. I attended a computer conference at work for a couple of hours and then did some errands. I went with John to his first physical therapy appointment, then hurried off to go bicycling with a friend. We pushed ourselves--13 hilly miles in under an hour. I cooked dinner and helped our son reorganize his room for a little while after dinner and then spent time on my computer.

Most days have that kind of balance--a lot of different things to do and not much down time but some significant part of my day is things I am doing for myself and I don't feel horribly pressured. Today I'm having coffee with a friend then a few hours at work, then going to meeting of my spiritual directors group. Some days are busier and more stressful than others--next Wednesday I am hosting a job candidate and appearing at a hearing for a student accused of plagiarism in the morning and have a massage and an appointment with someone who comes to me for spiritual direction in the afternoon. But even then some of what makes my schedule so full is things I am doing for me.

The trouble is, this is summer. I'm not teaching and I'm only working 2 or 3 hours a day at work-related stuff. I don't know how I would do it all if I was actually working full time.

John can still do things alone--I can't image what it will be like when he can't. I found a college student to help him move out of his office at work and reorganize his study at home. That seems to be working well and I am very grateful (I wouldn't have the time or patience to help him myself).

I'm thinking that I need to think of it not only as not losing myself, but also as how do I find myself in this new role? Caring for someone who is dependent has never been my strength. I was happy to be able to go back to work limited hours when my kids were two or three months old and have them in day care 5 or 6 hours a day. I'm hoping that this blog will somehow be a way of finding myself in what I have to do.

Doctors

One of the things that feels like a big change in my life is going to all doctors visits with John. I don't think I had ever been to a doctor's visit with him before, though he had been to some with me when I was pregnant.

In the winter, before he was diagnosed, he would come home from a visit to the urologist and not be able to answer any of my questions, so I started helping him prepare a list of questions in advance. But it isn't just that he doesn't think of or remember questions to ask, it is also that he isn't assertive with doctors. I don't know if he missed the boat when I learned to be more assertive with doctors or whether it is the passivity associated with the disease.

So I go to all his appointments and give my perspective and most of all ask questions. And it is a lot of appointments, as we learn more about this disease and put into place the set of specialists he needs.

There is the urologist--several additional tests and procedures since the surgery because the issue hasn't improved much. The urologist did do a test with a catheter with pressure sensors that showed that the problems were due to prostate issues, not due to Parkinson's (the bladder contracted well and the spincter opened well, which are the things Parkinson's can affect).

The family practioner referred John to a neurologist who then referred him to a movement disorder specialist (that story is below). The neurologist wants to see John every couple of months and the MDS wanted to see him again in three months. The neurologist put John on Sinemet and the MDS increased the dose to one half of a 25/100 four times a day (still very low). John reports that has helped him move much more freely, though I don't notice much difference.

The movement disorder specialist wanted John to have neuropsychological testing before deciding whether to prescribe medication for Alzheimers. That requires three appointments--one beforehand, the testing itself, and then one to discuss results. I have some hope from what I have read that the Alzheimer's medication will be a real help, so I pushed to get those scheduled quickly. John goes for the testing Friday and we get the results next Tuesday. But then we will be away so it will be July before John would actually start a new medication.

The movement disorder specialist also wanted John to work with a sleep specialist to find a different medication to take for sleep, as the one he takes can make REM Sleep Behavior Disorder worse. That also requires three appointments--one before and one after the sleep study itself. I'm not optimistic John will change his terrible sleep patterns, but he says he is willing to try. It probably will mean trying several different medications before finding one that works long term.

I asked the neurologist for a referral to physical therapy, as John wants to start an exercise program and I'm hoping the physical therapist can recommend a knowledgeable trainer. Everything I hear says that exercise is one of the most important things that can be done for Parkinson's. Our insurance doesn't usually pay for ongoing physical therapy, just for a physical therapist to teach the patient how to do exercises at home. I'm going to ask for some kind of written recommendations, both because John doesn't remember details well and because he can then give the recommendations to a trainer. That appointment is today--we will see what we learn there.

And that isn't counting that he is overdue to go to the ophthalmologist and should probably get his acid reflux related issues checked again. Thankfully after the prostate surgery he has met the out of pocket maximum for his health insurance so it is paying 100% and we only pay a $10 copay.

sigh

Several weeks ago John said to me "where do we keep the safe deposit box key?" It scared me that he couldn't remember where he usually kept the key. He has always been the one who went to the safe deposit box. I've actually taken the lead in a lot of financial stuff, but a safe deposit box is way low on my priority list.

Anyway, he did after a few minutes remember the regular place for the key, but it wasn't there. He's been looking for it when he has a chance ever since. He's about 3/4 of the way through the pile of papers and other stuff on his dresser and I think went through his top drawers too. No luck so far.

Originally, he was looking for the key to get into the safe deposit box because he needed his birth certificate to apply for disability from his job. While clearing out old papers at home he found another birth certificate, so he finally was able to get that application on its way (at least a week after he had it ready).

But I also need the kids' social security cards from the safe deposit box. Our son got his learners permit and did drivers ed a couple of years ago, but since he has been away at school we didn't keep him practicing and get him to get his license (he hasn't been very interested). Since his learners permit has expired he apparently has to start from the beginning with getting a new one. So he needs a birth certificate, his social security card, and a school ID. In addition to the problem with getting the social security card from the safe deposit box, he has lost his school ID. I know that they will take a tax form intead of a school ID, but it is pretty discouraging. I feel badly that he is almost 18 and hasn't gotten his drivers license, but it just feels like more weight than I can pull uphill alone.

And then I feel like a whiner. But it is a good example of where I feel most burdened these days.

realizing something was wrong

Pam here, starting the process of telling the story of our journey with Lewy Body Dementia.

Last fall I was getting more and more frustrated with my husband John. He messed up some travel plans. Our daughter had gone away to school, leaving us with an empty nest, and he never seemed to suggest making plans to go out to dinner or take a hike. I was eager to clean up the chaos in our house now that we had more time. I made progress with my part but he kept not getting to his part and and telling me I needed to give him more time. He seemed to be moving more and more slowly. He even ate slowly. I would get frustrated by how long it took him to buckle his seatbelt and start the car. He thought I was really unreasonable to complain about that, and he had a point.

We made a quick trip to Massachusetts in January and stayed with my mother. She commented that John shuffled--she was worried he would trip because he didn't pick up his feet. I said he seems to be uncertain about his balance, but even then I didn't focus on it as a problem that we needed to talk to a doctor about. As he said, he had always been slow and disorganized.

The turning point came when I said something to my therapist about John eating slowly. I said his hands moved as if he was suppressing a tremor (though he didn't have one at that point). My therapist remembered my mentioning my mother's comment about John shuffling and put two and two together and asked if I had thought about Parkinson's Disease. I said I thought I was pretty knowledgeable about neurological diseases as one grandfather died of ALS. (I'm afraid I'm a terrible know-it-all.) But I did go home and look up Parkinson's on the internet, and I was stunned. I had no idea that about a third of the time Parkinson's doesn't start with a tremor. Slow movement was exactly what John had. And he had been struggling for nine months with a frozen shoulder, though he attributed it to a fall in the bathtub.

The problem was, he had prostate surgery scheduled in two weeks. How could I bring up something so difficult when he was already facing scary surgery (just laser removal of the enlarged part of the prostate, but that was plenty)? So I decided I shouldn't say anything until after he had recovered from the surgery. I started reading about Parkinson's, and I began to worry in particular that John had many of the symptoms that predicted people more likely to get dementia.

But then about a week before the prostate surgery we were out for the evening and he said something about being worried about his balance. I said I had some thoughts about that but he probably didn't want to hear them until after the surgery was over. He thought about it and when we were driving home he said he did want to hear. I said I thought he fit the symptoms of Parkinson's. I started telling him a list of symptoms, and when I said "only swings one arm when walking" he said "Bingo!"

He had an appointment the next week with his family practitioner so I went with him. We listed symptoms and the doctor examined him carefully. The doctor asked us if we had a theory and we said Parkinson's. The doctor said he would schedule an MRI to rule out other things it could be, but those were less likely. And somehow he got John an appointment with the neurologist in our small town the next day!

I was hoping to get clearer information before our kids came home for spring break, but I didn't expect an instant diagnosis. But we got one--the neurologist said to John: "You definitely have Parkinson's disease." I thought I already knew that, but to have the doctor say it hit me hard. The doctor said he sends all his Parkinson's patients to an academic medical center for further evaluation. John didn't have time to think about much but his job, trying to finish up his semester of teaching when everything took him twice as long. I had a full time job as well, but I was obsessed with wanting to learn more, since that gives me some feeling of control. I did a lot of research on Parkinson's, and I joined the Yahoo groups both for Parkinson's Caregivers and LBD Caring Spouses.

It took a while to get the appointment with the specialist set up, a little over a month later we went to see Dr. Bergmann at the Medical University of South Carolina. Driving down to Charleston the day before, John and I talked about Parkinson's but also specifically about Lewy Body Dementia. I explained to him that when people hear dementia they think Alzheimer's but dementia is a broad term for any cognitive problem that interferes with daily activities and can look quite different depending on what kinds of thinking are affected. I said I saw him having problems with executive function, with organizing and planning. He has always been weak in those areas, but I was beginning to be able to separate out in my mind that it was getting worse.

Dr. Bergmann asked lots of questions and he looked at the MRI, which John had brought on a CD. John talked about the physical symptoms, but I also talked about his crying out in his dreams every night and about my having to take over travel planning. Dr. Bergmann asked John to spell the word "world" and John did. He then said: "now backwards." John started: B-A-C-K-W, and then the doctor explained that he meant to spell "world" backwards. John couldn't do it. Dr. Bergman tried him on a four letter word and he couldn't do it even with several tries.

Dr. Bergmann said to John that he definitely had Parkinsonism, but the question was which form. He said the symptoms weren't conclusive yet, but in his clinical judgment John had a form of Parkinson's with dementia. I asked how that related to Lewy Body Dementia. He said that is the formal name for it. He recommended the Lewy Body Dementia Association Web Site but he said that some of the information, such as the life expectancy of 6 to 7 years, reflected a group of patients diagnosed further along in the process. Again, I thought I already knew that it was going to be Lewy Body Dementia but it still came as a terrible shock to have a doctor say it.

Here I am

I've joined several email groups recently where people have responded with messages saying "Welcome to the group; I'm sorry you have to be here." I feel a little bit that way about taking over this blog.

This just a test post. I will start tomorrow telling our story.