Wednesday, August 25, 2010

Up From The Depths

It's been a *very* long time since I actively blogged. In early July my mother lost her ability to walk effectively, which had been going downhill slowly for years, and my sister and I became 24/7 caregivers for a couple of weeks while we got her into an assisted living situation, one which I had actually started the process for more than a week earlier. We got her moved, got her a power chair and combination wheelchair/power chair, and moved within two weeks of her loss of mobility in her legs.

At the end of the month, we went to our annual family vacation in Central Oregon, where Mom fell after getting out of bed in the middle of the night and suffered a brain injury. The week long vacation turned into a week of constant supervision, my mother going into hospice care (apparently a status now more than a location), and our more or less certainty that she would die shortly. We discovered several things during that week - you want to leave this sort of care to professionals, and that a week with very little effective sleep is hugely destructive to the family dynamic. That and some family is more willing to help than others.

Mom came home at the start of August, and has recovered considerably, much to everyone's surprise. She is still getting 12 hour care during the day as the assisted care only has people coming by every 2 hours and she needs a trip to the bathroom every 90 minutes or less and will try to walk there if no one comes in about a minute (which never happens). She is kind of with it, remembering people and non-recent events, but not places or things that happened that day or sometimes week. I said early in the process that family care was unsustainable, needing someone to make sure she couldn't get up in the middle of the night, fall, and do something worse to herself. I do no include dying - I mean incapacitating herself even more, such as a broken bone or increasing her pain.

I have learned that elderly care options in the US boil down to a very few poor choices, and that's if your family has resources. If they do, prepare to burn through them quickly - we estimated 24/7 professional care with mom in a rented apartment at over $250,000 per year. Adult foster care is great unless you have a high fall risk, which Mom is, and finding a good one is a trick. Nursing homes are grim. Assisted care is one-size fits all, with me being told repeatedly when I've asked for the management to collaborate with us that "perhaps you should look at other options." And this is a *nice* place with good staff, but they are horribly overloaded and it has taken more than 30 minutes on occasion for someone to get to Mom when she's pushed the alert button. If she becomes too much of a "problem" they will simply tell her she has to go somewhere else, and good luck.

Perhaps the worst is the mild dementia. I recently spent a 12 hour shift with Mom (we've resorted to giving her sleeping pills at night, aka "drugging" her, to keep her from falling) where she asked me six times when we were going home. Explaining her situation often results in her, with some prodding, admitting that she can't remember the past month, and ends with her getting angry when I explain again that we *are* home, that the people working there are all people she remembers and her things are all there, but she still gets angry and feels as if we are trying to trick her. It's like living a horrible Groundhog Day movie every 90 minutes to two hours. As you can imagine, that takes a bit of an emotional toll.

In a recent Esquire magazine, there is a small blurb that says "It is impossible to forget the sound of your mother's voice, even as she is forgetting yours."

This week, Mom went off of hospice care, which means that we no longer think she's dying. Had you told her this would happen two months ago, she would have asked for help committing suicide.

I'm generally very candid about my life, although I generally try to protect the privacy of other people, such as when I effectively "lost" my adult biological daughter last summer. This time, though, I think we as a society need a collective wake up call.

I am part of the boomer generation, just barely on the tail end, while my siblings are all on the front end. As this generation's parents are going through this process, there should be a huge wakeup call to my generation that we cannot continue to warehouse the elderly that are no longer able to care for themselves. There may be better ways for us a society to take care of people who can no longer get to the bathroom by themselves, but quite frankly I've come to the conclusion that when that day comes for me that I want the option to get it over with and euthanize myself at a time of my choosing.

Don't fool yourself, a very high percentage of seniors have this same wish today. My mother has been talking about it for years, ever since she fell and fractured a couple of lumbar and found that there was very little we could do in terms of pain management that didn't also risk her balance and thus mobility. It's enough of an unsaid reality that the Obama administration suggested that end-of-life care be something that every American should discuss with their doctor. The right went nuts, claiming that they were sponsoring Death Panels, but what they seemed to be ignoring was that a sizable percentage of seniors want more and better options than they have now. The terrible thing is that unless you are actively involved in the life of a senior with some sort of mobility or cognitive limitation, you don't understand that the choices you have now are nowhere near acceptable.

This is not to say we actively euthanize our elderly. I'm saying that when I want to go, I want the right to go in a manner that is peaceful, comfortable, quick, and that doesn't leave a mess. Unless I am diagnosed with a terminal disease that will kill me in six months, and I am in full control of my faculties, I can't do this, and the only reason I could if I did meet those criteria is because I'm in *one* small state in the US that *does* allow people to take their own lives if they wish to. If you have a religious proscription against committing suicide, then go ahead and be a burden to your children. That's your business. Because believe me, my mother is now a burden to her children, one that we have almost no effective way to lighten unless you would be affected by rolling back the Bush tax cuts for the wealthy.

Because I understand that I live in a country that no longer has political discourse, only shouting and propaganda and fingerpointing, I am not at all sure that I'll even have that choice in the next 40 years, which would put me at the same age as my mother. My goal at this time, as a result, is to enjoy all of the delicious food I can that will kill me, drink regularly (if not to excess), live a little harder. Because our bodies were never built to last as long as they do now, the UV damage done that we call aging is not reversible or stoppable, and when you hit 80 you are going to fall apart no matter how well you've taken care of yourself, which my mother did. It doesn't matter.

I am telling every 60 something I know at this point that it's time to start thinking about end of life, and what you *really* want. Having a registered Physicians Orders document that governs your resuscitative options that you update regularly, informing your children of your wishes, stocking up those pain pills if you get them, contacting your congressperson (although right now, nothing is going to get done in Washington in the next ten years or so, the environment is far too aimed at stopping the opposition rather than achieving anything for their constituents). Really, whatever you have to do, you should be preparing to do.

Of course, then I see the weather report for the world and realize that the infrastructure is all going down in the next ten to fifteen years anyway, maybe sooner, so it's probably better to just stock up on food and ammo and buy a place in the mountains with a little arable land nearby and few if any neighbors. I hear property values are at historic lows.

Grim? You bet. Maybe that's why we've avoided discussing it as a culture for so long. It's still coming, and it's coming for you and your loved ones. Ignoring it won't make it go away, so start giving it some serious thought *now*, whether that means a living will, health power of attorney, POLST, or a bottle of opiates in the freezer. Because the chances are really good that even if you *do* have resources now, they may or may not be there when you need them to keep your quality of life at a point where it's higher than quality of no more life. And believe me, you do *not* want to have to ask your children to find a way to help you die. I know.


On a lighter note, after a long series of watching the light at the end of the tunnel turn out to be an oncoming train, appear to actually be emerging from the tunnel and have started gaming and living my own life again. I will be back to writing about games again in the next few days. And this time, I mean it.

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