Working on Better Endings

Welcome to our last blog post of the year.  Before I get to it, let me say thank you for supporting us.  We appreciate it every time you read something we write and every time you listen to our podcast.  You are literally the only reason we are doing these things! 

At the same time, though, likes are very much appreciated, especially on our YouTube channel, which we’d also love for you to subscribe to (and which we’ll be putting major effort into in the new year).  We also greatly appreciate reviews of the podcast, as they help spread the word, and support via Patreon that covers some of the costs of putting the podcast together.

Now for the post itself.

Except that I’m not quite sure where to begin. 

I wanted to write about assisted dying.  It’s not a cheerful way to end the year but it’s important to be able to have a gentle end to your own story.  But it’s mostly unavailable.  The legal right to medical assistance with dying would make the world a more humane place.  Yet it’s complicated.

If assisted dying had been available here in Germany, the horror of the last week that Spouse, MIL, and I lived through—but not my father–in–law—could have been avoided.  Except that maybe it couldn’t have been.  Because, argh... It’s not always clear what is the right or even the best thing to do. The deeper you get into a situation where assisted dying would be useful, the more you see how convoluted the maze of shades of grey the possibility of helping someone end their life can be.

FIL had Alzheimer’s.  If you’ve ever had a close relative with this disease, you know what devastation it wreaks.  Over the course of a dozen years, Alzheimer’s had withered FIL into a shadow of himself (although not without the occasional increasingly dimmer flash of his old self).  Then, in the middle of December, FIL got sick and had to be hospitalized.  This had been increasingly happening, but this time it was an infection. They tried but couldn’t deliver the antibiotics he desperately needed via an IV. He kept ripping it out of his arm.  And orally the antibiotics just weren’t effective enough.  FIL’s condition quickly degraded. 

But there were ups and downs.  Things looked grim—and Spouse and I rushed down from where we live several hours away—and then they looked better and then they looked grim again.  Meanwhile, the doctor kept threatening to discharge FIL in a day or two, even there was no way MIL, tough but small, could properly care for him at home on her own.  In the state he was in, it took two people to get him up and out of bed to get him to the bathroom or anything like that and there was no end in sight to the wait for a space in a nursing home.  

The last day that FIL was at least briefly lucid—which turned out to be two days before he died—he swerved back and forth between saying he wished it was all over and saying that he was so glad that he had more time.  In retrospect, clearly, he was dying, so swift and severe was his deterioration.  But even the doctor and nurses didn’t recognize it up until half an hour before the end. That was when the off–duty physical therapist who had come to visit (because she was a friend) was like CALL HIS WIFE AND SON NOW!  And even then, it didn’t occur to the doctor or nurses on the ward that he needed sedation posthaste so that he didn’t have to experience the horrible death his was about to have to...well, not live through, but you know what I mean.  It only occurred to them to offer sedation a minute or two after he’d died, to stop the twitching the body does as all of its biological electricity discharges (so to speak).

Given all that confusion, maybe the possibility for assisted dying wouldn’t have spared my FIL from drowning in his own lung fluid because of the lung infection that is the typical way for people with Alzheimer’s to go because eventually their coordination degrades to the point where they can no longer successfully swallow or properly cough.  And maybe it wouldn’t have spared the three of us—MIL, Spouse, and I—from having to watch him die that way.  (The off–duty PT fled in tears the moment we arrived, thereby missing FIL’s death by about 120 seconds.  Which is to say, I think FIL fought hard to stay alive until his wife and son were able to get there and then let go.)

Oh, the number of times this last week that MIL muttered, we would have put an animal out of this misery a while ago already.  And the number of times that Spouse agreed!  Still, the deeper you get into a situation like Alzheimer’s, the more you see that maze of shades of grey.  You can say, well, the person they were before they developed Alzheimer’s would have never wanted to see themselves live this way.  And they would have wanted not to suffer the horrible death that is about to befall them.  You know you are horrified by seeing them live this way.  And you’ll never get the sight of that horrible death out of your head, especially nights, when you are trying to sleep. But what do you do when the person there in front of you now, thick in the midst of their advanced case of Alzheimer’s, has different feelings about it?  Can you just say they don’t know what they’re talking about? Plus, they aren’t just miserable.  Even when they’re in the hospital dying, they appear to experience moments of joy.  Sure, you are certain they don’t grasp the future they’re facing or the horrible death that awaits them.  But even if they don’t understand what is happening, how could you ever have the moral right to say fetch the poison for someone who has moments of consciousness but can’t decide that they’re ready to go?

All of this is not to say that assisted dying is wrong.  As muddled as this week was, after experiencing it, I am now all the more certain that assisted dying is important. We have that moral right to decide the where and the when of dying for ourselves when the time comes, for whatever reason, to die. We ought to fight for the legal right to it, too.  But the fight for people to have the legal right for medical assistance with dying with dignity and without undo suffering will take facing the fact that assisted dying can be a thorny issue. There are times when it’s wrong and should be withheld. And there are times when it isn’t clear if it’s right or if it’s wrong and that can be true even when the person in question is suffering and has no hope for recovery from whatever is destroying them. We need to be brave enough and clear headed enough as communities or societies to address these issues.

I guess, in the end, then, assisted dying is what I’ve ended up writing about.  I guess I’ll also say hug your loved ones!  And go do something out of the ordinary with them.  It doesn’t have to be anything major, just something different enough for you to always remember.  Because as long as life is, the years do go by and eventually come to an end that sneaks up on you, leaving you to think about all the time you didn’t spend with someone before it was too late.