Here is an update from his most recent Dr. appointments. His AZ Psych was hard for both Jordan and me. Jordan does not do well in his Dr. appointments. It's weird...he can be "normal" with me before the appointment. But once we get into the Dr. Office he goes to his "other place". Stress? Is it because we are talking about his condition? I don't know. He did fairly well with his Primary Care Dr.
But his AZ Psych was not great. When she talked directly to Jordan he mostly spoke gibberish. I don't know if any of you have experienced this. His "gibberish" is real words...but they don't make sense and they don't have context.
Jordan's hands shake sometimes...I think that is his nervousness...But he is often really unsteady. The AZ Dr. was concerned that he has some Parkinson symptoms. Evidently, that is not uncommon. However, I have not noticed his hands shaking lately. It could have been nervousness. --But the unsteadiness is significant. She wants me to get him a cane (immediately). I haven't done this because I honestly think a cane may make it worse. You have to have some coordination for that (right?).
I am considering getting a walker. I think he may be able to stay more steady with that.
Update on "Living Skills"
- Living Skills still vary from day to day though in addition to my bathing him (shower) I help Jordan with toileting. Some public places have a "family" bathroom. Though, the last two times there was not one. In this case, I simply have to call out to see if there is anyone in there...Once it is empty, I take him into the handicapped stall.
- Eating is more of a problem. He has a very small appetite and doesn't want to eat. But more significantly he has trouble with eating. He is able to use his utensils, etc. but he is very messy (very unlike pre-AZ).
- I need to schedule a Speech Therapist appointment for him to have his swallowing tested. It is common for AZ patients to lose the ability to swallow. I am seeing signs of a struggle now. Oddly, it's a speech therapist that evaluates swallowing.
Cognitive/Memory and Emotions Update:
- For the most part, he knows me and knows I'm his wife. In the AZ Dr's office, he wasn't able to identify me. He said I was Danielle...which is close. But earlier that day (earlier Dr.) he was able to tell the Doctor that I was Kimberly and I'm his wife. I think it was just too much for him on the 2nd doctor visit.
- Identifying people in photographs is hard for him. He often asks "who is that" when he's looking at a photo of Danielle and me. When he's looking at an old photo of himself and me he asks the same question. BUT, when he sees a recent photo of himself he says "that's me".
- It's hard to explain all of this...he is not reduced to just this. Every day is filled with lucid periods and confused periods. I'm getting better at recognizing where he is in the lucid/confused spectrum. Once we are dressed if I hurry and get him out of the apartment (to walk the dog with me) I can keep him lucid longer. But, if he's ready before me he gets distracted by finding and hiding things and he becomes obsessive and I begin to lose him.
- There are times in the day where he is completely aware and we laugh at our old jokes or some of our current silly antics. His AZ Dr. said he is likely still having hallucinations. They seem to not be as pronounced. He hasn't "followed" them. But before the increase in his meds he would tell me where the people were. They were usually in the apartment building across the street.
- It is not every day that he tells me about the people. I may have told you that I'm pretty sure he is flashing back to his Microsoft days. This is based on what he tells me they are discussing and the anxiety he experiences.
- Most often he tells me about the people talking and being critical and wanting a project to be finished. Most of the time I can simply talk him through this by reminding him that we are "retired" and don't work. I tell him that we don't have to do projects...and if someone gives him a problem to remind them that he doesn't work there anymore. This often helps.
- Sometimes TV upsets him. Now I pretty much watch it on mute with subtitles. It does serve as a distraction...but if there is arguing/drama it upsets him. --You know even sitcoms have arguing. For the most part, though, he still loves The Big Bang Theory. I can keep the volume on with that one. He laughs at all the right places with that show.
Most important update:
- I'm always worried that the status reports paint a bleak picture. The truth is that recently it has not felt bleak. He is still so incredibly sweet. We still enjoy being silly together. We laugh a lot!
- He lights up so much when he sees Danielle.
- I've gotten better at circumventing melt downs.
We have two appointments on 9/21 and two on October 4th. I'm still figuring out the best way to deal with the Dr. visits. --I still think we should stick with the current group of Drs. It's taken so long to get where we are. --My current plan is to arrive the evening before and leave the day after. This reduces the cost of hotel and boarding pets.