Tuesday, March 15, 2016

Now AMA

Gentle readers....

H has been in a nursing facility since September, 2014 subsequent to his car accident.

About two weeks ago, I got a call from the nursing facility that his family was taking him out of the facility and moving him into "an apartment." The nursing facility said that he was leaving AMA (Against Medical Advice) as their evaluation is that he needs 24 hour care...which H vehemently denies...and so does his family. I am legally unable to stop H from leaving the nursing facility.

The next day he had moved out into temporary housing in a "medical hotel," which provides temporary, independent housing through a local service organization for people with HIV.

I was not consulted and it was a surprise that he actually moved out. They wrangled to get me to take care of him for about a year and I repeatedly said NFW (no). So, they just moved him out.

H is elated as he has been "released from Hell" and now has his own room that is quiet. His family and some friends are all helping him (from what I can tell, about 6 - 8 people) get settled and get his care needs set up. The rub is, they don't understand the full extent of his needs...they are clueless that its taking 6 or so of them to help him, yet they don't understand why one person can't do it all, like I tried to for many years...even tho' I did have help.

So, today, there is much chatter about his medications. He takes (last count) 22 different meds a day and the total number of pills is about 50 a day. Someone has to order the meds, set them up...but they didn't think about that. They didn't ask me about this, nor did they plan ahead.

His family has supported him in his fantasy that he can live on his own, even though I didn't think he could for several years before the accident. And, so they have put him at great risk because H whined about how much he hated where he was.

This will likely not end well for him and that make me very sad. My plan is to help, but not rescue him...although part of me says, "just walk away." I haven't been able to do that for years...maybe now is the time to do it.

Tuesday, May 26, 2015

Placement, finally


Gentle readers, again another year has passed. Much has happened.

Last August, H was driving to an appointment at a nearby Dr's office that he had been to many times. He got confused, took the wrong route, left the road, and hit a utility pole at between 40 and 50 mph (we think). Thankfully, no one else was hurt, but H was critically injured. He was in a Miata and the pole hit the car just in front of the driver's door…he was lucky to live (maybe).

All of his limbs were broken, his lower back was broken, multiple facial and skull fractures, and a traumatic head injury to his forehead. He was unconscious in the ICU for almost two weeks, in the hospital for another 3 weeks, then off to a skilled nursing facility, where he has been since September.

Last December, I told him that he wasn't going to be coming home. I simply can't take care of him anymore…it is too much for me, too stressful. And the social workers won't discharge him home unless I have someone in the house when I am at work all day because he's not safe. And it costs too much to have someone at the house all the time.

So, he's in a facility with a bunch of seniors who are near or at end of life. It isn't the right place for H to be, but for now it works in that he is not at the house. We're working on another place for him, but it isn't easy to find assisted living for a 55 year old man.

As expected, H's family are up in arms, minimize his care needs/disability, and have pulled out the stops with guilt, shaming, anger, and pleading.

My emotions are all over the map, even months later, but I am gradually settling in to my new reality. I see him weekly and talk with him almost daily. But, no matter what, he cannot move back into the house.

And now, when I second guess my decision to place him, I read back through this blog and wonder how I managed to survive all those years.

Tuesday, April 22, 2014

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.

Tuesday, August 07, 2012

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.

Wednesday, August 01, 2012

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.

Monday, July 30, 2012

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.

Monday, June 18, 2012

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.