email to doctor

I've slowly been working on an email to the specialist who saw John. He wanted John to have neuropsych testing before trying Alzheimer's medications. The neuropsych testing didn't show much, but I still have some hope that Alzheimer's medications would help. So I am trying to explain in my email the issues that the neuropsych testing didn't show. So far I have written:

The testing doesn’t show problems, but I experience our daily life as radically changed. Some friends came to visit last weekend and were struck not only by John seeming physically frail but also by how he turns to me to do things for him and/or tell him what to do and by his being detached from what was going on (even more than he used to be).

Let me see if I can be more systematic about what symptoms are affecting our life:

• John can’t manage planning things like travel or family activities. I notice this most with anything that requires trading off several considerations to decide what to do, but it is also an issue with simple family activities because he doesn’t take initiative. He doesn’t seem depressed, just passive.
• John gets focused on something small to the exclusion of what is significant. One day at the family summer house he was focused on flies (there were indeed some flies in the house). He knocked into and broke a large bottle of salad dressing trying to kill a fly, then got obsessed with going to town to buy a flyswatter. What I thought should have been significant was whether we were going to take our kids to the beach.
• John’s memory has never been good but it is significantly worse. Mostly plans or things that need to be done go out of his mind but he will remember if I remind him. But occasionally he doesn’t remember even when reminded.
• He gets confused about things such as what we need to do or why. Mostly I can explain whatever it is to him and he will get it (or at least say he does). I haven’t seen him get lost in familiar territory yet, but he did fail to recognize our rental car after we had had it almost a week.
• He will usually either leave the room and go read or sit without saying much if there are more than two or three people gathered, even with friends and extended family. He has some trouble with his hearing if there is background noise but it feels to me more like he gets lost.
• It usually takes him until at least 10:30 to be ready to go anywhere in the morning.

John doesn’t tend to get anxious and is only rarely defensive or in total denial. He seems willing to put himself in my hands. But I can’t do everything. I need to be able to put some of my energy this summer into my own work and our son’s college search. I’ve been hoping that Alzheimer’s medications will help.

a new LBD blog

A welcome (and sorry that you have to join the club) to a new LBD Blogger: Holly is writing a blog called Lewy Body Dementia about her father.

I'm finding that the way to deal with my sister taking over is to make our own plans and then ask her if she and her kids want to join us. But that ends up even more with all the responsibility for organizing on me.

beach

Scattered thunderstorms today but we had a nice walk on the beach, John and I and our kids. I was convinced the storm would pass us by but John got worried. I asked him if he wanted to take the car keys and start back and he did. The rain held off until after we were home again, but it was fairly close. I like the beach when it isn't sunny.

My youngest sister and kids are here sharing the house and she has taken over and is busy doing several things at once. No more quiet. Our bedroom is at the end of a wing and John has retreated there, but the wireless doesn't reach that far. The kids are playing Monopoly together, so it is good for them.

a moment of quiet

The Magnesium Citrate worked, in about an hour. The severe constipation causes prostate inflamation and John had difficulty urinating afterwards, but I gave him Naproxen and within a few hours that problem had cleared up. So we succeeded in avoiding a trip to an emergency room, thanks most of all to what I have learned from online support groups. None of John's doctors have given him useful guidance when he has brought up constipation as an issue. John did say that this time the problem did build up over several days--he thought he was ok after we got back from Germany and didn't pay attention.

My youngest sister arrives with three elementary-school children from California to share the house with us today. When I made our plans to stay on Cape Cod until Friday I thought she was coming Thursday. The house is plenty big but we have our own routine and eat a quite different diet (John and I eat low carb to control diabetes) so I don't look forward to having to cooperate on meals. We will see how my sister responds to John. I've talked more to my middle sister, because I changed my durable power of attorney to list her rather than John.

friends

After my bike ride yesterday I wasn't feeling well and took a nap. I woke up a little before some old friends arrived to visit overnight. We went out to the beach and then had a big lobster dinner. We took a walk to the lighthouse before we were ready for icecream for dessert. So I had a nice birthday.

My friends and I and the four kids went out to the beach today; John didn't go because he didn't like being splashed riding in our small motorboat yesterday and it was even windier today. When we got back John called for help. He was in the bathroom with severe constipation. He thought he needed to go to the emergency room but I remembered someone in the email group saying that they took their husband to the emergency room and were sent home with a bottle of magnesium citrate. So I went out and bought a bottle for John and we will see if that works before we head for the urgent care center or the emergency room. He's very uncomfortable. This is the second time this has happened to him (the first time he went to our urgent care center and the doctor helped him) and both times it has come on suddenly rather than developing over three or four days.

When he had problems after surgery we got some real help from a pharmacist in working out a routine of fiber, stool softeners, and Miralax. He may need to take the Miralax more regularly--he has only been taking it when he thought he needed it.

The husband of the couple who were visiting is a medical researcher (MRI) and so they weren't freaked by John's problems. My friend says he does see cognitive changes in John, and also sees how John is depending on me more. It was nice to get that validation.

Negativity

I'm reacting to Spouse's comment on my last post, which gives me a helpful opportunity to think more carefully about what I feel and why I write about it this way here. I tend to crash after an exhausting trip emotionally as well as physically, and what helps me when I am in that state is to let out my feelings. As I look at what I write on this blog I feel I sound like a whiner, always complaining about how John's issues affect me rather than feeling empathy for him. But again, having grown up in a family where my feelings were denied, I know that what is best for me is to accept my feelings rather than get stuck in feeling bad about feeling bad. I hope that what I write might help someone else who is feeling selfish and inadequate feel not so alone.

I do feel my future has been taken away from me. I expected this stage in my life (age 53 with my kids out of the house) to be a time when I could be more creative and productive in my own life. I hoped to be more active professionally and to redeem my rather weak research record by writing an important book in my field (I had begun research on that project but had to put it aside because of new administrative responsibilities at work). I had even responded positively to feelers about a job that would have been a large step up in another city, once John had retired and we no longer had the problem of two academic jobs in one place. Yes, I will have a life when this is over, but not those 15 years before retirement.

I had hoped to rebuild a deeper relationship with John. I had hoped we would now be able to have more of a social life than we had when two kids and two full time jobs took all of our energy and our house was in no shape to invite anyone over. A little more than a year ago I came to some closure on a long process of healing from childhood sexual abuse and felt that working through that old pain would no longer be a major focus of my life. I hoped that I could experience more joy in my life.

Now I fear whether I will even be able to keep my job, or whether I will need to retire earlier than I would have wanted in order to care for John (I will be eligible for full retirement in a few years so financially it will make more sense to retire). I certainly don't expect to be able to take on anything more ambitious in the way of work that would require a lot of travel. I'm committed to making time for my exercise but I have had to cut back--John's doctor's appointments and the extra stuff I have to do as the responsibilities of our home fall all on me take away from the time I would put into training enought that I don't expect to be able to do a longer triathlon this year.

I am very blessed. We have the money and flexible schedule to be able to travel. We have two wonderful kids. I have come as far as I have in my healing journey and have a wonderful therapist. I responded to a diabetes diagnosis five years ago by getting healthy and I enjoy very much the training for triathlons I do for exercise. I feel a part of a faith community (actually several faith communities). But today on my birthday I am grieving my losses.

And now I am going to go out for a bike ride and that will help my depression.

Flies

John came through last night—he not only made dinner but cleaned up afterwards. I slept pretty well but was still groggy in the morning. And my eye still hurt when I blinked--the medicine didn't seem to be helping at all. I called around until I found an ophthalmologist who could see me, but he didn’t see anything wrong. He didn’t deny what I was reporting entirely—he said it was probably the beginning of a stye. But it still felt like another experience of my pain not being seen and believed. I haven’t had a stye in 20 years or more, but it makes sense as something that might be a result of stress (particularly as I don’t ever wear makeup, which is the other thing that can cause styes).

John got focused today on flies. The house has a screened porch that connects the two parts of the house, and there were a number of flies inside trying to get out. First John wanted to leave the kitchen door shut on a lovely sunny morning so no flies would get into the house. Then he broke a large bottle of homemade olive oil and balsamic vinegar salad dressing trying to kill a fly. Then he drove into town solely for the purpose of buying a flyswatter. Punding here we come. But I don't think it is the result of too much levidopa, as such behavior was growing worse before John started medication.

I wish he would think about what we might do to enjoy the day instead. I suggested to our daughter that she would have to motivate us if she wanted to go to the beach. She and her brother took a walk on the beach alone (I was just back from the doctor and helping my mother with a car). I would have been happy to go out on the boat if someone else had gotten us moving. But with the kids taking a vacation from their ADD medication I can’t really expect them to do it.
We have friends coming tomorrow for one night. It happens to be my birthday, though I am trying to ignore it. My mother said I am too young to want to ignore my birthday. I’ve never been unhappy about getting older, but right now I don’t want to think about my birthday because I feel like my future has been taken away from me.

end of the trip

Our travel went smoothly, except that as we were waiting in line for passport control our son said he felt queasy. It was about 8:30 pm when we got our rental car. Luckily we had planned to spend the night at my mother's house half an hour away instead of driving the two hours back to Cape Cod. As I stopped the car at my mother's house, our son threw up, a lot. I had given him a plastic bag, which turned out not to have any holes in it, so it wasn't a huge mess. I got him to bed with a bucket. Apparently he threw up several times during the night but I was so soundly asleep in the room next door that I didn't hear him call out loudly "help" until about 3:30 am. After I had helped him I had some trouble getting back to sleep, but I eventually did.

John woke up early for him, around 7, and very groggy, but he wanted to go with me to do some shopping. I thought that one main point of the shopping was that he had lost his pyjamas, but when we were part way there he said he had found them in a different part of his bag than where he usually put them. We weren't going to head to Cape Cod until mid afternoon so our daughter could get together with a friend first, so it didn't matter much what we did. I have a very sore (though not red or runny) eye and my doctor kindly called in a prescription for me for some antibiotic ointment--I'm hoping it will be better in the morning.

What we didn't fully realize is how much extra traffic there would be around Boston because of a parade for the Celtics. We got on the road for Cape Cod about 3:30 hoping to be early enough not to hit too much traffic, but it was bad. John said he was feeling less and less groggy but by the last hour of the drive I was running out of cope and hungry.

I said I was exhausted and once we got to the house someone else would have to take over. John said we didn't need to stop on the way, he would go out quickly and get some things for dinner. I further said I couldn't handle eating later than 7 pm. He said he thought that wouldn't be a problem. I ate some bread and cheese, but I still feel just desperate to go to bed. I'm going to try to stay up at least until 8.

It is now 6:45 and he sent our daughter up to ask me how to cook the fish. John for several years did almost all the cooking, but I did specialize more in fish. I'm actually feeling a little better, so the prospect of dinner at 7:30 doesn't feel as impossible as it did. I asked our daughter to focus on helping him (she's distracted by trying to set up Skype so she can talk to her boyfriend with a webcam I just got her). Whatever happens we will learn from it.