Gentle readers, it has been a very long time since I've written as for the past year or so, it has been relatively quiet here…relatively. And, I haven't had much news to share….
H continues his inexorable slow decline. There's been a few hospitalizations, but nothing really major except for open heart surgery. He didn't have a heart attack; he had a defective valve that had to be replaced. Surgery went well and he came back home within a few weeks.
The worry continues to be about the dementia. He can't remember to take his pills and he has been sleeping most of the day. He's up for a bit when I get home from work, eats something, and then wants to get up when I go to be to take his evening meds.
I've made a lot of progress in my emotional work to deal with all this. The key piece for me is to not take the hook when he tries to get me ("You don't say 'I love you' anymore) and to stay focused on what I need. The way I think about this is that my tolerance has increased so that living with H no longer is as difficult for me emotionally, but it still does have a cost. And, many, many thanks to a wonderful therapist.
My therapist tells me that H would be better off in an adult family home because he would have social contact, someone to help with his care, and a whole new set of people to entertain with his stories. I do worry about the social aspect as we have few visitors and H is asleep much of the time.
Yesterday, H told me that he thought his virologist was keeping him on a med that made him sick just out of malice. Now, this is one of the best virologists on the West coast who has saved H's life many times. I told H that it simply isn't true and that he's being paranoid.
H keeps telling me, "(a single man's endearing nickname), I just don't know how much longer I can do this. All I do is sleep and take meds; when I'm awake I feel awful." He also tells me that he can tell that he's getting "stupider" and that this distresses him greatly.
What else can you do but bear witness and be there?
So…more of the same, really.
H continues his inexorable slow decline. There's been a few hospitalizations, but nothing really major except for open heart surgery. He didn't have a heart attack; he had a defective valve that had to be replaced. Surgery went well and he came back home within a few weeks.
The worry continues to be about the dementia. He can't remember to take his pills and he has been sleeping most of the day. He's up for a bit when I get home from work, eats something, and then wants to get up when I go to be to take his evening meds.
I've made a lot of progress in my emotional work to deal with all this. The key piece for me is to not take the hook when he tries to get me ("You don't say 'I love you' anymore) and to stay focused on what I need. The way I think about this is that my tolerance has increased so that living with H no longer is as difficult for me emotionally, but it still does have a cost. And, many, many thanks to a wonderful therapist.
My therapist tells me that H would be better off in an adult family home because he would have social contact, someone to help with his care, and a whole new set of people to entertain with his stories. I do worry about the social aspect as we have few visitors and H is asleep much of the time.
Yesterday, H told me that he thought his virologist was keeping him on a med that made him sick just out of malice. Now, this is one of the best virologists on the West coast who has saved H's life many times. I told H that it simply isn't true and that he's being paranoid.
H keeps telling me, "(a single man's endearing nickname), I just don't know how much longer I can do this. All I do is sleep and take meds; when I'm awake I feel awful." He also tells me that he can tell that he's getting "stupider" and that this distresses him greatly.
What else can you do but bear witness and be there?
So…more of the same, really.
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