Nothing unusual in the 5 months or so since I've posted last. More of the same. What I can say is changed is my attitude and approach. I’m just trying to be kind and helpful to H, focus on my work, and do things that I enjoy. Not much else I can do, aside from get me a boyfriend, which would likely make it easier still for me to care for H.
H continues his slow decline and is getting more and more frail. Frail as in just not able to do much (dishes, clean up after the bird, put clean clothes away) and hardly ever leaving the house except for Dr. appointments, which of course I take him to. Last year, this time, he was getting out of the house for walks a few times a week in the neighborhood, but now, "I just don't feel well enough to do it." He told me the other day that he thinks that his legs are atrophying (they look like it) because he is either in bed or sits at the computer all day.
His dementia is getting worse too, as expected, ever so slowly and insidiously. Now, long term memory is going more and more (short-term was already gone). No news here really and no stories to recount...I think that I'm so used to it by now that I don't think it remarkable…just the way he is. He stares off into space and can hardly get a out sentence at times. Very hard to have a cogent conversation with him much of the time...he keeps reliving traumatic events in his past and can't stay focused on the "right here, right now." How I crave adult conversation that isn't about his health or his trauma.
He desperately wants to see his dad and sister in another state. And I desperately want him to go for any number of reasons. He put it in motion to go, but finally last night he agreed that he can't...he just doesn't have the stamina. And every time he's gone on one of these trips, he comes back and stays in bed for weeks and sometimes has seizure episodes. Of course, he doesn't remember any of this history.
The current scary thing is that he is topping out on how much pain medication they can give him for his neuropathy. His tolerance is high after 15+ years on narcotics and in any case, you only have so many receptors that the opiates can bind to and reduce the pain. So increasing the dose won't work anymore.
Options for the next time he needs to up the dose: 1) go into in-patient detox, get zero'd out on the narcotics, and begin again with no tolerance & 2) have a spinal stimulator (wire in spine with an electrical charge) to block some, but not all, of the pain. Both seem awful. Needless to say, he is beside himself and terrified of either option. It bothers me too...but this is just one more situation that I have to witness in his long journey downhill. I don't feel fear about it, just sadness and resignation...yet another big health issue.
If there is any gift in all this (and there are gifts), it is that these situations are prompting him and me to have honest, intimate conversations about where he is, the impact on both of our lives, and what we need to plan for without his denial being front and center. Now, I remember these conversations well and cherish them as he is rarely present when discussing tough (well any) topics. I hope that he remembers and cherishes these important moments as well.
Thursday, March 01, 2012
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