Tuesday, April 03, 2012

Talkin Bout

There is a line from The Who's hit song Talkin' Bout My Generation: "Hope I die before I get old." I'm not sure what Roger meant when he wrote it, but I take it to mean "old" in the infirm, disfunctional sense. Decrepit. Querulous.

The last few days tending to my father, who is living in a heavy and thick Alzheimer's fog with emphysema come to call after sixty-five years worth of cigarettes, certainly make me agree with that.

Maybe it's not so bad for the patient, past a point. Memory goes, words don't have meaning, no history, good or bad, is attached to the faces you see. Short returns to awareness don't stick; no past, no future, and the present is mostly blurry. The night terrors fade with daylight, unrecalled.

"Where is Mama? Tell her to come here!"

"She's in the wheelchair. She had a stroke, she can't walk over here." 

"A stroke? Nobody told me."

"Yes, we did. You just can't remember."

When your mind is gone, what do you miss it with?

The people around you notice. The disease robs them, too. When your father looks at you and asks Who you are? When he gets up at 3 a.m. to go pee and stands in front of the toilet asking, "What do I do now?" Or, sitting on the bed, wonders where he is suposed to sleep? Or, outraged at some phantom inside his head, slaps at you in fear and anger? That's hard. When the most frequent word he speaks is "What?" Followed by "I don't know what I'm supposed to do." Or, banging on the wall and yelling in the middle of the night, "I need help!" and when you ask what the problem is, he doesn't know. Or he says "It doesn't matter, I'll be dead before morning!" Dressing, showering, shaving, teeth-brushing, all like climbing Everest without oxygen.

Or the other things that are too much information ...

You know what the good thing is about emphysema so bad you can barely breathe? When you yell for people in the middle of the night, the breathless rasp is not as loud as it would be otherwise. There is a silver-lining for you, hey?

And is it any better that you disliked the man most of your life? Grew up in fear of his quick temper and equally-quick willingness to use his hands when he lost it?

Bad days and not-so-bad ones, but none that are really good and knowing that the progression is only going to get worse. Like watching a dropped ball bounce, lower with each rebound, going to stop in the not-too-distant future.

It's a terrible war, fighting Alzheimer's and worse because not only are you going to lose, you can't even slow it down once it takes hold. If the body outlives your brain, the care goes to 24/7, and doing it at home without somebody who is always there, all the time, becomes untenable.

And that rough beast is slouching round my parent's house. My sister doesn't want to know that, but it's just outside the door and about to knock.

The Who was just a rock band, but they had something in that lyric.

Excuse me. I need to go do some push-ups and work a crossworld puzzle and wash down some vitamins with a spinach smoothie ...


Steve Perry said...

Again, sorry for the formatting. Blogger sniggers at iPad.

William Adams said...

No need to apologize. We all understand your need to just express what you're going through. For much of my father's last year of life he was in a hospital in and out of a coma. Hopefully there will be moments of lucidity where the two of you will be able to say those things which need to be said. If not, just being there, can be enough.

Shawn R. said...

I'm so sorry for your difficulties. My thoughts and prayers are with you and your family for peace and comfort.

Jim said...

Wish there was something I could say or do. I've been very fortunate not to deal with this yet. The closest was my grandmother, who had about 6 not-so-good months, and one or two bad weeks out of 105 1/2 years.

You & your family are in my thoughts and prayers.

steve-vh said...

My father is currently in ICU in Florida after complications from his third triple bypass and valve replacement. 55yrs of smoking, ect.
The amount of complications are staggering and they have him "hooked up to everything they have".
This has been for three weeks now and it sure seems longer. Never know each day if he'll improve or get worse.

But to the point of your post, he didn't really expect to survive the surgery I've now found out but decided he couldn't live how he was without it. Rather figured he'd either survive or he wouldn't They hadn't really considered the gulf of care required inbetween.

Steve Perry said...

Nature of western health-care is to fight on after the war is lost. Some families want that, some don't. I'm of the mind that if the end is near, major heroic measures are usually not called for unless you are trying to keep somebody around long enough to say good-bye. People haveto make their own choices about this.

Steve Perry said...

Sorry about your Dad, Steve. I understand how you feel.

Evan Robinson said...

don't worry about the formatting. Stream of consciousness better reflects the storm of emotion.

I echo the thought up-stream that western allopathic medicine tends to value length of life over quality of life. But that valuation sometimes benefits everyone, too. You're having the sucky end of the experience, and I'm sorry that it's happening this way for you.

I've sat with two dying parents (my mother and one of my fathers-in-law) and watched another from a safe distance. It's not easy.

And it shouldn't be. So long as you acknowledge your relationship with your father (however flawed it, and he, may be), this is where you want to be. Even where you _have_ to be.

My brother, who had not seen our widowed mother in 10 years, finally arranged to visit her -- on what turned out to be the weekend after she passed away. He got there in time for the wake, but that was all. I can't imagine how that felt.

One thing I try to remind people facing the death of those near them: people get crazy. Not necessarily the dying people -- the people around them. I think it's the emotional overwhelm. There will probably be times where you or those around you act entirely irrationally. And you have to be OK with that. Things can get done and said during those periods which have the potential to destroy relationships. Remember the context and let them go. Even if it's you acting weird. It's OK.

Do what you can to take care of yourself. We started drinking every afternoon while tending my father-in-law. Neat Scots Whiskey was the drug of choice, and it helped get us through, without having long-term consequences. Getting a couple of hours off can make a huge difference -- and make sure you don't fill that time with other things you have to do, like laundry or bill paying. Just be a vegetable if that's what works for you, or go find something to hit. I do recommend that you avoid sparring, though. Working out your emotions on a heavy bag is one thing -- working them out on a sparring partner is something else. And yes, I speak from actual experience.

Be as gentle as you can with yourself and those around you.

You can get through this.

We're all here if you need to talk.

Steve Perry said...

Thanks to eveybody who posted or sent emails, I do appreciate it. Things here are in flux and my sister and I still have to sit down and decide what needs to be done next.

Probably will get to that Saturday.

At the risk of being trite, it is what it is; we'll do the best we can and muddle through. Lot of folks out there are dealing with a lot worse things, it's all relative. And relatives ...

steve-vh said...

Evan sounds like he's got some great advice there.
I went through the craziness at 22 when my mother died at the age of 48. My father's actually the only one I still talk to and we didn't speak for two years after, yes they sure did go crazy. I know I was in shock for many years.

thanks Steve
Myy dad, in his selfish selflessness, had a living will and gave power to the docters to make tough emotional decisions. didn't want to make family have to do so. Not realizing their job is to keep you alive at all costs and his wife is now a little powerless. She's working with a patient advocate and I advised her to sent the living will to an impartial old lawyer friend of my dad's that did an earlier will. should hear more soon on that.

steve-vh said...

btw steve, one of your posts some time back about your father, for good or bad, helped make you who you are.
that one's really helped me come to grips and some wisdom about childhood and our relationship.

Thanks much for that.

I certainly know it helped me realize the kind of father I wanted to be for my son and what not to be (or not at all). Recently I was complimented by some male friends who were both expecting. "that's the kind of son I hope to raise and the kind of father I hope I can be" about our interaction.
Can't get much better.

Steve Perry said...

Sometimes you learn lessons from somebody, not "because of" but "in spite of," more as a reaction than anything. I swore I was never going to be the kind of father to my children that mine was to me. So that was a good lesson, albeit not the one he offered intentionally. There's a lot of that in my life: afraid of drowning, get all the livesaving and Water Safety Instructor badges. Afraid of bullies? Lots and lots of martial arts. Worried about how to take care of m family's illnesses? Teach yourself to challenge the PA exam.

Most of my father's help was unintentional, but it did help make me who I am. I honor that. But it didn't make me like him.

Daniel Keys Moran said...

One of the last few real personal goals I have in my life is a good death. (Some writing stuff, too -- but mostly: hand off my children to the future competent and able to cope; die well.)