As I have mentioned in previous post, DH doesn't usually know who I am. Sometimes I'm his friend and he says he loves me and sometimes he thinks I am his brother, at which times he can be nasty. Sometimes he has no clue who I am and asks me my name and why I am here with him and what do I do for him. His actual required care is easy but this mental stress is really getting to me.
Yes, it is a weirdly lonely feeling. Your spouse is there, you live together, you aren't alone…but yes, you are. Sometimes it seems as if you still have some relationship left…but then…no you don't…they're bonkers again. I used to read a lot and also spend a lot of time online. He watched a lot of TV,(not that he knew what he was looking at), so it was fairly easy to be close by, able to keep an eye on him but still trying to have something to occupy my mind. I think knitting or needlework would help with the mental stress. Or maybe just sitting with a pack of cards and playing solitaire. I would have loved a pet, (and Larry liked animals, too) but I was afraid he would trip over it, or open the door and let it get out and then forget about it.
Well said Elizabeth. Unfortunately about the only TV I can interest my DH in is an hour of news and occasionally golf or some other sports (as our Cavs in the basketball playoffs). I do knit and read a lot and spend time on the computer. What drives me crazy is he thinks he is perfectly normal and you can't tell him anything. That and wanting to go home to where his wife is because he hasn't seen her in a long time. My only saving grace is that he sleeps at least 10 hours a night. I had to have our cat put down recently and I thought he would be upset - has only mentioned her twice in the last month.
katlady37, I so understand what you are going through. My DH watched TV also but then could not seem to focus and then could not use the remote. I can also relate to what Elizabeth said about thinking you still have some relationship but then you don't. I hated being in this limbo place--always unsure of the current situation and then when I would get used to him being a certain way, things would change and I would have to adjust. I found the constant adjustments very anxiety provoking as we all want to be able to stand on stable ground. I do believe it is the uncertainly of it all and not knowing what is next that causes the stress--at least it did for me. You are fortunate that he sleeps. My husband did not which is a big reason I placed him as I knew that not getting sleep would be a deal breaker for me. My doctor told me that with dementia either they sleep or they don't and mine did not
Oh my goodness, the memories you two are bringing back--the sleep deprivation (mine was up and down all night, and needed help to get to the bathroom), the constantly having to "fix" the TV because he couldn't work the remote…and…starting around 5pm every night, that constant, "I want to go home…take me home." Aaaugh!! Looking back, a big part of what made it so hard was that there was no definite end date. Hindsight is clearer than foresight, and I can now of course say: Well, he took a huge downturn around Aug. 26, and was gone on Sept. 2. But all those months in 2013 and 2014 when I had no idea how long all this was going to go on…there really was no clear end date in sight…my stress levels were just off the charts. I honestly would not have been surprised if I had dropped down dead and he outlived me. (And I'm 25 years younger and in decent health.)
Hi katlady, During the last year he was at home, my husband did not know exactly who I was (wife, girlfriend, sister, mother). But he was not angry at me unless I refused to let him do something he wanted to do, like go “home” in the middle of the night. Strangely, since he has been in LTC, he seems to be more affectionate. I think this may be partly due to the fact that, except for doing special things like shaving his head, I am no longer a hands-on care giver and do not tell him what to do. I admit I encourage this relationship by praising him, smiling at him, holding his hand, and stealing little kisses. I suppose I will suffer when this stage is over but right now, it makes me feel better.
Even though my husband interacted with our two cats daily, when they were put down within months of each other, he did not even remember them. Out of sight, out of mind. This makes me wonder if he would realize it if I were gone . . . ???