More of the same

 

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.

A coupla a snippets

Lost at the mall

I come home from work yesterday and H is not there. One of the cars is gone, so I figure that he's gone to visit a neighbor. I don't like him driving and I discourage it...my therapist tells me that I just need to take the car keys (just like I took the stove knobs).

After awhile, he comes back and tells me that he's been to the mall...his dad gave us some gift cards and H was just looking to spend them.

Later in the evening, he tells me that he couldn't find the car in the mall parking lot after he went shopping. Well, he knew where the car was, he said, but he couldn't remember out how to get to the car on foot. Now, the lot he parked in is where we usually park when we go the mall.

I'm glad that he told me about this incident and I responded with calmness and interest...not anger as I often do.

H has had a recurring dream about going to the mall and then not being able to find the car...the mall is too big to go around and too confusing to go through. So, he can't get home. Usually, he wakes up without being able to find the car.

Odd how reality echoes dreams...

Happily, it ended well and H went to mall security to help them find the car. They did and H drove home.

Anger is easier

I have been struggling with anger towards H for a long time. And the anger motivates me. Unfortunately, anger also is not the way that I'd like to respond to H (or to anyone, really). Instead of using anger to derive my strength, I need to let my love for H drive the right outcome for us.

But it is easier to feel angry than to focus on my love for H and for doing the right thing out of love. With anger, I don't have to feel the sadness, fear, distress...you name it. If I focus instead on the love I have for him, it is very upsetting, as you would expect.

And, if I focus on love, then I can center on what is best for H (and for me) as opposed to "I have to get him out of the house or I will go crazy (which is also true)." At this point, the focus needs to be keeping H safe, regardless of all the other issues.

Taking account

I've begun to write down what is going on with H. For example, leaving the windows open, leaving the burner on, getting lost at the mall. I need to focus on what is actually happening as opposed to what H says about his abilities and what I wish were true.

In many ways, I am grateful that these things are happening now...suddenly and in a cluster.

I need to be objective about what is going on with him. I will need this info as I yes, once again, consider placement for him.

Sad to say that what is happening is, in fact, happening. Been here before with dementia, except these types of things usually happen when his viral load is high. Right now, his viral load is effectively zero.

Tipping point

Over the past month or so, H is back to being in bed much of the time. He has been exhausted and his dementia is worse right now. He's not eating much at all. He's sweating profusely again at night. These are classic signs of a viral load spike.

While his viral load is still pretty low, his T-cell counts have dropped 50% in the past month or so for some reason. Usually, the viral load rising is the leading indicator, followed by T-cell counts declining. But not this time.

This type of thing has happened before: the virus gains resistance to the meds, he gets near the edge (e.g., his dementia gets much worse, he gets very sick), and then a new med is available (just at the last minute). And they pull him back with  a new med. Then the virus gains resistance to the new med...rinse and repeat.

But this time, H's virologist doesn't know what to do as H's virus is resistant to all the alternative meds. And there aren't any new ones of the immediate horizon.

H is afraid right now and I'm doing what I can to comfort him...to be kind, loving, & helpful. He is uncharacteristically not in denial about what is happening. I've told him that we've been here before (many times) and that it will work out. But I don't believe it...not this time; maybe, I'm just being hopeful that this is the end.

Over the past month or two, I've been doing research on placing H.  I've finally come to the clear conclusion that I just can't do this anymore, can't deal with his dementia, the lack of a partner, the work, the burden, the stress. Been here before too. Maybe placement will be easier than I fear, given what is happening to him right now.

The related cycle is: pull him back from the edge with a new med, then after a year or two, the meds are failing and I'm going crazy as his dementia gets worse and he becomes less functional. Then I move to place him. Then he gets on a new med and gets better. This cycle, too, has happened many, many times.

However this round plays out, what I can say is that I'm optimistic for life after H. I've been fantasizing about it and, while you never really know how it will be, I am more than a little excited at finding out what life can be without this burden.