What the psychiatrist ordered....
Finally after weeks of waiting, the big day arrived. I was so anxious that we ended up getting there early, despite getting a little lost. Very unusual for me. Luckily they took us in early too, Ray hates waiting in doctors waiting rooms so I was grateful for that.
The doctor was a sweetheart and not only took his time but was very sympathetic about everything. Asked questions about things I had never considered, but should have; Ray has never peed in a potted plant by mistake so I guess he's a lot better than I thought! He kept writing a list of tests and things he wanted me to do before our next visit mid-February, there was no way I could have remembered it all in my head. Some of them involve staying at a test site for a few days; it will be hard to convince Ray to do that, he is more and more afraid to let me out of his sight recently. Unfortunately I had a sore throat and a cough, unaware that I was coming down with the flu, so I have been out of commission for a few days and will have to start making the calls Monday.
First off, he told me I had to read a book called "36 Hour Day" which is about dementia. He made a point to tell me that there are similarities between stroke and dementia and he didn't mean Ray necessarily had it, just that it would help me as a caregiver. I was able to order it from my library, they are well stocked on it so it must be a good one.
Then very next thing, he wants an MRI to check for dementia and microinfarcts. OK, guess it can't hurt. Bloodwork but we are already going later this month for our primary and a lot of the same tests. The test I really hate is when doctors test Ray by shooting him questions and he gets half of the answers wrong, he seems all there to me when we talk but maybe it's my imagination. But it does upset me when doctors act like Ray is worse than I think, while I'm telling myself how well he's coming along. I could be living in a dreamworld. The neurologist does the same thing and it always leaves me in a funny mood for the rest of the day. Anyway he didn't change any of his meds, just switched them around and changed the doses for now. But he is asking one of the tests to consider Depakote instead of Dilantin, he says he doesn't like Dilantin.
Then the overnight tests. Ray will never go for these, although I will try. It would be nice to have a day or two off from caregiving, but he will want me to stay with him if it ever happened. First a 24 to 72 hour video EEG, doc claims it is like being in a hotel room, wonder if there's a TV. I doubt it, I don't think you are supposed to have outside stimulation? I can't remember the short one he had, but the technician did blab to me the whole time so maybe not. Ray really isn't competant enough to know it's for his own good and this will not be pleasant news to him. More like going to jail, not a vacation. The other is some kind of sleep study for apnea, which sounds like another overnight. He had bad apnea when he first came home, but it doesn't seem that bad now, wonder if it's really necessary. For a cure, all they do is give you a mask with oxygen from what my neighbors tell me, and none of them could stand it for more than a week. They said they felt like they were suffocating, and a waste of money.
As for me, I already have an appt with their social worker (despite having an in home one monthly; but she is useless, I know more than her, so why not) and then I have to make an appt with another doctor there for a caregiver psych visit. Guess that will be on my insurance, although I hope not!
Next he gave me an eval to get Ray back to PT; his speech therapist (whom he adored) contacted me yesterday about coming back since it's a new year, so far Ray is NONONO. I hope to change Ray's mind somehow, just to get him out of the house even once a week for the next couple of months. Just for the socialization if anything. Doc also wants a dental eval, but unless Medicare covers that, I don't think I could afford what I know he needs. I was just sitting there being a little overwhelmed by all this. Everything's been the same ol', same ol', for so long now, it will be hard to get out of our rut.
One thing that really encouraged me was that I mentioned the support I get here, and he asked and wrote down the website like he was going to check it out. He really did seem like this was more than a job for him, that he enjoyed figuring out how each patients brain works. So I am going to set up as much as I can in the next month and a half, and maybe we can get this show on the road again!
Afterwards we met our friends at a nearby authentic Chinese place and had a New Years Eve feast of unbelievably delicious and exotic dishes, Ray ate some of everything which was surprising and wonderful to me. Then I went home and realized something was wrong, turns out I was coming down with the flu. Struggled through New Years Day, managed to make the turkey dinner I had planned, was in bed the rest of the day. Couldn't sleep all night as I developed bronchitis as I always do. Spent all day Wednesday on the phone with my doctor, ordered chest xray and start on penicillin. Pat our aide/guardian angel, happened to call in case we needed her because she had a cancellation. Did we ever! She ran over with some (more!) Chinese food because she knew I couldn't cook, watched Ray while I got the xray, then insisted on picking up my prescription. While she was gone, the doctor called and said he just saw that I said my temp was spiking at 104 and wanted me in immediately. Pat returned with my pills and although it was past her working hours, again insisted on taking us in her car so she could watch Ray. The doctor let me go home, I took the first dose and went right to sleep. Ray was pretty good and stayed downstairs by himself, but I know he was scared. I checked on him once or twice, and by the time I went down to get him to bed I felt 90% better. I can tell the symptoms will linger, but yesterday I made a pot of turkey soup and did all the laundry so I'm doing OK. It's been a crazy start to our New Year so far!
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