Learning to stay

I wrote this post awhile ago and I think that this is a good time to publish it.

I've been reading a book, "The Places that Scare You," by Pema Chodron.

While there is a lot of good stuff in the book, the key thing I'm learning is to stay with difficult feelings and not cower from them or medicate them away.

Chodron says that difficult feelings in response to an event are based on a judgement that something will likely be bad.

The reality is that we just don't know how things will work out.

The tricky bit is to have an open heart and mind and not assume that something will be good or bad. Just wait..."stay"...and see what happens.

In the book, Chodron tells the story of a small village and that an only child, a son, of some farmers was thrown from a horse and was injured. He was so injured that he would never be able to work on the farm to support his aging parents in the way that he had in the past.

Shortly thereafter, a call went out to all the men in the village to go fight a battle. Because the son was so injured, he couldn't go to fight.

As it turns out, all of those called to war were killed and the injured son, while not able to works as hard as he once could, was at least able to be there for his aging parents and care for them. They were grateful that he was still alive and he was grateful that he could help his parents.

You never know how something will work out.

I struggle to stay without judgement and see what happens in my situation with H.

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.

One of my jobs...

I came home last night and found the gas stove burner on. He managed to cook some eggs (even tho' I had made him some earlier...he "didn't see them"), but forgot to turn off the burner.

I came home the night before and H had left the house, but left many windows open. "Well, at least I turned on the security alarm," he said.

In the past, I've jut gotten mad at him about these types of things, but after he got up from his nap and over dinner, we talked about this. I wasn't mad this time, just weary and concerned.

"One of my jobs is to keep you safe, H," I opened, "and I'm not certain that I can do that. Yesterday, you left the house open and today, you left a burner on."

"What am I going to do if I can't keep you safe at home?" I asked.

"Well, I'm not usually this bad," he says.

"Yea, but you are worried about strangers in the neighborhood and being robbed, but then you leave the house open and you tell all the neighbors that you have AIDS and take pain meds and smoke pot. You told me you wouldn't cook, but then you do...do you know that this is the 3rd time you've left the burner on?"

Now, this is all on top of a simple repair I asked him to be home for last week (unclogging the kitchen drain) that turned into a $600 bill because the tech took advantage of him IMO. I'm disputing the charge with the CC company now.

Sigh.

While this is all somewhat distressing, it is just the most recent examples at how impaired H really is.

If there is good news in this, it is that safety issues can be the precipitating event where I have to place him. The worry is that I don't know how bad this will get when.

In any case, I've hidden the knobs from the gas range and it can't be operated without the knobs. But, this is just a workaround for that one issue.

At least with a kid, you get a sense of what they can and cannot do and you adjust. And you know that over time, they will become more capable, not less. In this case, however, you just don't know what to expect.

Stuck at home

Thank you all for the comments and inquiries.

H is stable right now (which is good), but the quality of his life, well, in a word, sucks. The usual: sick, in pain, tired all the time, forgetful, somewhat paranoid...you know the usual.

I received a summons for jury duty next month. I've done it before and found it interesting and a nice break from the usual grind.

I was talking with H last night about jury duty and he said, "Now, don't forget your responsibility to me."

"What do you mean?" I asked.

"Well, if they want to sequester you, you have to tell them that you can't," he said, "because of me"

"Oh, I see," I said. And the following immediately came out of my mouth, " It's really sucks that you can hardly leave the house because of your health and it's hard for me to get out the house for the same reason...few trips, no social events, no entertainment events, and not even jury duty."

"I'm sorry," H said, "that your stuck here with me."

He looked very distressed.

"I know honey; I know that you would change it if you could...but you can't and neither can I. Let's just make the best of it we can."

Acceptance is very, very hard for both of us.

But, right now, I’m just focusing on making myself happy as I can and working on my bucket list. Many of the items on my list either require a functional partner or no partner...those will have to wait.

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.

Today is my birthday (and I'm getting shoes)

H has needed new shoes for some time now: tennis, casual, loafers, you name it. I've been trying to get H to the mall to buy shoes for some time, but he rarely feels well enough to do that. So, last week was H's birthday and I thought that we could get some shoes and go to dinner afterwards.

We walk into a high-end shoe store (famous name starts with N) and I tell the person working there, "We're here to get some shoes for my friend." We talk a bit about what kind of shoes we're looking for and show her some ideas: walking, casual, slip ons...etc. She disappears for awhile.

All the time she is gone, I'm talking with H about this shoe or that shoe, did he like it, does he care about the color, etc.

The clerk comes back and asks how H is doing today. And he says, "Today is my birthday. I'm 53 today." The clerk looks a bit puzzled and asks, "What are you doing to celebrate your birthday?" "Well," H says, "I'm getting some shoes and then we're going to dinner." Now I'm noticing how out of place he seems around adults who have good social skills. (Conversation here about where we are going to dinner.)

While we were sitting at the shoe place, he started complaining about his stomach, so I knew that dinner out was out of the question. So, we ordered in that night.

Later H confessed to me that he probably sounded silly...like someone who is "slow"...and he asked me if I was embarrased...no, not really. I told him that I usually am on a mission and just focus on doing that. "But, no, I'm not embarassed...you do what you do and I'm just trying to get the job done." But, yea, he did sound slow.

Later he told me that maybe he was so odd because I just took over the proceedings and I told him, "Not really. I got it started and tried to involve you in all of the choices, asking your opinion, etc. What you say & how you say it are entirely up to you. Besides, worse has happened, so no, I'm not embarassed."

Tired. Bored. Lonely. Distressed. Burned out. But not embarassed.

Detox or wires in the spine

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.