done right?

John has risen to the occasion of his aunt being in a nursing home recovering from a fractured pelvis. He is organizing himself instead of just drifting. He isn't as patient with her as he expects me to be with him, but he is there every day doing things for her. And it looks like she may be able to return to her apartment sometime next week.

When she first was injured I wondered whether to skip a meeting that I had promised to be at, and I told myself that if I wasn't there everything wouldn't get done right, but that was ok. I'm having trouble holding on to that philosophy. John just left the clothes Florence had been injured in in a plastic bag from the hospital until I started gathering her laundry to do. When I put the laundry in our washing machine I discovered that her bra with breast forms was in the bag from the hospital. Realizing that now she is getting dressed she probably wants that very much, I told John that the plastic bag that was over one of the hangers was particularly important, to make sure to give it to Florence when he took her her clean clothes. I think I even told him why.

That was Tuesday. Friday he called me because Florence had asked where her underwear was from the hospital. I told him it was in the plastic bag over one of the hangers. I said I had told him it was important, to give it to her right away. He said "You know I forget things." I feel badly for Florence. But telling myself it was important so I should have done it myself isn't really realistic.

Prescriptions

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.

Lists

Over the years of John's ADD, I have found some compensating strategies that work. We have pegs to hang coats on immediately inside the door, and they do get hung up. Google Calendar is wonderful--we share our calendars so his calendar shows up on mine and vice versa. I download my Google calendar to a small palm pilot so I can carry it with me.

But lists have always been a problem. I concluded years ago that it was hopeless to get John to use a list, that it was too stressful for him to look at a long list of things to do. The month before our trip I depended on a list of things I needed to do, which was sitting in the middle of the kitchen table, and he never looked at it.

The psychologist who did the neuropsych testing said John should keep lists, and he seemed to think that was a good idea. I wish Google calendar had a way to integrate a to-do list so it would show up to one side of the calendar. I guess I will try Google documents for a shared to-do list, though getting John to check a third thing in addition to his mail and the calendar seems iffy and I wish it didn't take several clicks to get to the list. I actually like the paper list in the middle of the table, but it does get messy. I tried a "Getting Things Done"-style organized list myself for a while, but I think that would be too complicated for John. I set up the Google documents list divided into:

• John short term
• John long term
• For the kids
• Household

We will see if it works. Maybe I should clear off our messy refrigerator doors and print it out regularly and put it on the refrigerator.

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.

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.