Months ago, we decided that a spring break trip to Taiwan was not in the cards. There was no way Dad would make it through a 17 hour plane ride, both ways. So we decided to scale back and planned a road trip through Canada to visit his cousins in Toronto. This, at the time, seemed like a much more feasible plan. We'd already been on a road trip to Philly, and he did very well.
Less than a month before this trip begins, we are beginning to have our doubts. For the last week Dad has gotten more restless and prone to alarm over trivia. He has also gotten very difficult to put to bed, and to go back to bed after toileting in the middle of the night. Finally on Friday, Dad's psychiatrist recommending increasing his sleep medicine by half a dose. Actually an anti-anxiety med, it was originally prescribed when he was not only up all hours of the night, but was getting very belligerent during the day. Increasing this med seems to have greatly improved his sleep. However, it hasn't done much to change his mood during the day. Dad has gotten into a mode of repetitive speech, where he harps on the the same thing and talks about endlessly for over an hour at a time. Last night after dinner, Mom was cleaning up, and instead of hovering over her like he usually does, he remained sitting at the table and kept saying his name, "Ed Tanng! Ed Tanng!" over and over. Mom finished and decided it was too early for him to go to bed because he'd had a late nap, so she went into the family room to relax. Instead of following her, like he usually does, he stayed at the table, now switching to, "Mmmmichael! Mmmmichael!" I walked by and as I looked in on him, it was momentarily really depressing. He didn't resemble Dad anymore, he was just a person saying the same thing over and over, like a record stuck by a needle. I couldn't stand it anymore, so I brought out a sack of wooden tiles. There are 20 pairs of matching pictures stamped on these half inch thick tiles. I sat down and just started lining them up, sometimes matching, usually not. Then I gave him a tile to see what he would do. He stopped talking long enough to peer at the row of tiles, then lay another next to it. So I kept at it, handing him tiles. After a while he started talking again, but this time, it was not quite as "broken record," as before. And he would stop intermittently for several seconds if something caught his eye. All in all we kept at it for about 15 minutes, until Mom came over and said it was time to go to bed.
In the middle of the night I was awakened by Dad saying, "Ed Tanng!" over and over, getting more insistent and really loud before my mom shushed him. She seemed to be having an argument over changing his clothes or something had gotten wet. It went on forever, then suddenly stopped. This morning she told me he was fine getting up and getting changed, but refused to get back into bed without his hat. Apparently he had gotten food all over it during dinner so my mom washed it, and hung it on a rack to dry. He went to bed without it the first time, but suddenly remembered and refused to go to bed again without it. I told her in the future if she can't get through to him in one or two tries then forget it, she'll have to either give him what he wants or just leave him be. She finally did go down to get his hat, which is why he suddenly stopped harping and went back to bed.
With Dad this way we have some concerns about taking him on a trip. We are planning to stay in a hotel some of the time, and with a cousin whom I haven't seen in over 20 years for the other part. If Dad is this loud and ranting at night we are afraid of disturbing other hotel guests, not to mention host family members. The best case scenario is that with a combo of adjustment to Dad's sleeping meds and seeing what he's like during the day, it might still be okay.
We are hoping to start Dad in the new adult day program this week. This is at the memory care facility where we are also considering respite care. We were planning for Dad to go there this summer, but if it becomes clear that we can't take him to Canada and we still want to go, we are hopeful that he can go to respite care. I have spoken to the director and the dates work. No matter how this pans out we are hopeful that the day program will be enjoyable for him and give Mom the break she needs.
The NP at the psychiatrist told us early on that whenever we make plans we have to have not only plan A, but plan B, or even C, because plans with a person with Alzheimer's are always in flux. Plan A is that Dad comes with us on this trip. Plan B is that we go on this trip and Dad goes to respite. Plan C is that we don't go on this trip. I would really appreciate prayers for this matter as Plan C feels like no plan at all, but Plan B is a bummer for Dad because he is part of the reason we decided on this trip to Toronto.
ETA: On Friday, Mom took Dad to the psychiatrist. It was the first time she met him, and the first time the doc has seen dad in almost 6 months (we usually see the NP). When Mom told him all about Dad's behavior of late, he looked at Dad and said, "But he looks so happy right now! Look he's smiling, and so quiet!" And this is what is so frustrating. When Mom takes Dad to a doc appointment, or to visit the memory care facility, he's all smiles and very mellow. Right after they got home from the appointment he started harping again. Mom had to take the care out for a repair, and when she got back in less than an hour, he was yelling at the bathroom mirror because, "something's wrong it with, it won't open!" The only question the doc asked was whether Dad has ever gotten violent, and he hasn't. He has started accusing Mom of hiding, if she is out of his sight for more than a few minutes, but otherwise no signs of paranoia. I think this means that until his behavior starts getting into that kind of territory, our options in terms of meds are rather limited, and for good reason. I think it was the NP who said that the kinds of meds they would prescribe for paranoia or violent behavior are very powerful and have their own side effects. So practically speaking the only thing we can medicate for is his sleep. As I am writing this, Dad has gotten out of bed and is trying the TV remote over and over, because he wants to have the TV on for bedtime. I know that the conventional wisdom is that you should always agree and do what you can to keep them happy, but there are a couple of absolutes for bedtime. He can't wear his glasses because they will bug him later and he will start playing with them endlessly. And he can't watch TV or have it on because the flickering light and images will keep him up and pretty soon he will get up again and start fussing about something or other. And right now he still gets very upset about both. Mom finally stopped arguing with him and left the room with his glasses. Then he came out mad because she didn't leave the TV on for him. The only recourse we have is to turn off the power strip so the remote doesn't work. We are watching him on the video cam and it appears that after 15 minuteshe is giving up and getting ready to go back to bed. He is puttering with his cpap mask, which might take another 15 minutes. This kind of thing can happen on any given night.
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