Define "Stable"

Randy noted a while back that my dad's condition has been stable for a while now.

That sounds good, right? No hospitalizations for pneumonia, no urinary tract infections, though his last diagnosing doctor mention he's been thoroughly colonized by nasty bugs by now. He can still walk - using a walker - from bed to chair and back, from either one to the bathroom or to the chair in front of the TV for, say, a Vikings game. His appetite is steady mostly, though low. He's also stable in being unable to really fight the pressure sore on his behind from sitting and lying always on his backside, however much you try to vary his position. (We're trying a new sample medication right now, but who knows how well that'll work?)

He's also fully in the grip of dementia. What's really rare are the times he seems to have some clue as to who/where/when he is. But he tries. He'll ask what day it is. Repeatedly. He can manage most days to button the front of his shirt while I manage the rest of his dressing for him. He gets how to thread his arms through the openings in his suspenders, though it's often a fight to keep his balance while each hand leaves the walker. Routine, and slow, simple sentences are key.

Sleep is both his best friend and his worst enemy. His brain resets each time, both good and bad, depending. Sleep is his escape from the daily struggles to make sense of his world, as well as just how he gives his body rest from the struggle to keep breathing and performing all the other functions. Many days he will sleep through except to be awakened for dressing, being bathed, being fed. He's always surprised at how fast the day has fled when we wake him up to go to bed.

Occasionally he has a day or two where sleep eludes him. Then we worry. He becomes crabby, touchy, balky. He'll try to find a way to cut his oxygen line, and when balked, refuse to wear it. (As I told Jessica when she was trying to cope with him in this frame of mind, you can't force oxygen on him until he's unconscious. But back off, and soon he'll forget whatever it was that put a bee in his bonnet.) He'll get very lewd in his conversation, and grabby-handed with his aids.On those occasions, we wait for an easing in his uncooperativeness, and get an extra Lorazepam into him. "Extra" meaning other than at bedtime. Usually this means he'll sleep, though it's not perfect. It also means he might not wake for his bath, and we've found out that it really matters that we tell his aids when he's been given an extra one. They worry, bless their hearts.

He alternates between not keeping an idea in his head for more than a minute, and worrying one like a terrier with a rat in its teeth for hours. The other night he stated he needed to go out to make mail deliveries. I tried to disabuse him of this need. He wasn't having any. It didn't matter that he wasn't sure if he was working for the local post office or the State Fair post office (doesn't exist). It didn't matter that he had no idea what he was to deliver. Somebody called and told him he had a job to do and by gum, he was going to do it. I tried to tell him nobody called: I was sitting right next to the phone for the last hour and it hadn't rung. Didn't matter. I reminded him of his difficulty walking. No matter, he'd make me drive. He wanted to know what I'd done with the $55 which Agnes had given me the night before to do this. The facts that nobody had given me money, that Agnes died years ago, and there was no job all had no effect on his obsession. He knew what he knew. Would I please go get the car ready? No, I wouldn't. There was no point driving him to the post office because it was closed for over an hour and everybody was home, like we were. Well, then, could I please go look up their phone number so he could call them? I could, but no. Same reasons. He tried to bribe me with the idea that there was $150 being paid for the job. No go. Well, was I willing to take his pen time then? Pen time? The time he'd need to serve in the penitentiary for not getting the job done. Sure, no problem.

That settled him down for a bit, but it was good that Paul arrived home from work about that time. He was just starting in again, and I needed to leave the room. And he couldn't be left unwatched. He just might decide to head out of the house on his own. He's tried before.

He can't stand to anybody holding a conversation near him that doesn't include him. He can be asleep and low voices will wake him. But there are times when we need to talk to each other either about the state of his care or just how's-your-day stuff. It doesn't matter if it's none of his business. He will get upset.

He has more problems handling familiar objects. Every nebulizer treatment, 3-per-day for over two years, is a battle. He keeps pulling it out to try to see the vapor stream, and wants to declare it over when he can't see anything. Nevermind that he's nearly blind and we can still see it fine. He wants to lay his chair back, putting the dispenser at the wrong angle to feed the medicine through. Sometimes we just take the chair controller away from him till the treatment's done. When it's time to shut it off, often as not these days he'll try the chair controller first, then the part he holds, looking for an off button, then finally going to the machine to fumble all around it to find the little rocker switch to shut it down. I can tell him where it is, but the words don't register.

His reward for all that is a hot cup of coffee (mornings), yet some days he can be told it's there and hot, even what color cup it's in today, and it won't matter. He'll put his chair back and tune out the world. (Of course there's nobody there for me to talk to at the time to drive him nuts. That would keep him awake!)

There have been no repeats of the what-is-a-spoon-for? incident, so apparently that goes far enough back in his memories that he still recognizes it. Some days the chair controller gets stared at like some foreign new contraption. The radio has so many buttons on it that he doesn't even try any more to turn it on/off for himself. Unless he has to. So sometimes I wonder just how much of what is going on with him is creative imcompetence for attention, and how much is real.

Speaking of attention, the moaning really gets to me. Partly, it's designed to. The instinctive reaction is to ask what's the matter? What can be done to help? He will say he's fine, nothing's wrong, he didn't even know he was making noises. Used to be that if you turned on his radio, the moaning would stop. Nowdays, not so much. It can go on and on, every breath a moan, for hours.

You can tell it's real when he starts squirming too. That means his butt is sore. He needs a change of position, a clean-up, an application of medicine. Sometimes all the above. He'll confuse the issue by confusing when he needs his leg bag emptied and needs to go to the bathroom for a bowel movement. When we question what he really means, he'll get angry at us, often while insisting on using the wrong word for the function needing attention.

When he's angry, it's tough trying to soothe him. Any explanation of what you meant is heard as criticism of him or his abilities. I understand the frustration, but some days whatever you do is wrong - just like it seems for him, I'm sure. If you're lucky, you can change the subject, say, by offering him a hot cup of coffee. If not, wait a while and he'll have forgotten what it was all about. If still not, get up and leave for a bit. Don't come back until your tone of voice can express your happiness to see him again after all this time, and your willingness to help in whatever way you can.

And mean it.

I wonder on occasion just how much of a favor we're doing to him by keeping him current on all the meds and procedures that not only keep him comfortable as possible but keep everything functioning at whatever its top level is these days. He's often expressed the wish to die. Perhaps that's why he removes his oxygen, or tries to find a way to sever the line. We let him know we won't cooperate in speeding him on his way. We replace his oxygen tubing, give him his full dosage of pills, keep track of his food and liquids, maintain all the systems as best we are able. Had he been lucid when these wishes came upon him, we might treat him differently. But his living will expressed his wish for everything possible to be done for him. It was only last December, when he became officially a hospice patient, that he finally agreed that DNR orders would be appropriate. It helped that he was more lucid then, and understood that CPR would likely break his ribs, and he'd live in extreme pain for however much time he had remaining. Even he didn't want that.

So we look for the small pleasures. A favorite cookie. A hot cup of coffee. A football game, likely watched by halves several hours apart, bless the DVR. A regular evening phone call from my brother. The drumstick from the turkey. On a really good day, a backyard bonfire and brat roast. A backrub with lotion.

And always greet the new day as if it's great news that he's still here, and let's get ready for that next hot cup of coffee.