My Dementia Lessons | The End of a Long Goodbye

My brothers and I agree that my father is a difficult man to capture in words.  There were so many sides to him.  He was serious about art, literature, music, and politics.  He was also witty and light.  He was social.  He was also shy.  But he could tell a good story.  So many wonderful stories. 

My father Alzheimer’s meant that he told his stories a lot.  Like, a lot.  As a lifelong diarist (thanks to him, by the way), I started keeping track of his stories.  Ten years ago, he had 53 stories in active rotation.  I gave them each a title.   You may know some of them:  “At my first confession, I confessed everything I ever did to this poor old nun.”  “I once brought my mother a bag of snakes.”  “You meet a lot of interesting people when you drive a taxi.”   And his father’s great prediction: “The Electronic Age is coming.” 

Only three years later, he was down to 13 stories, and they had little to do with his actual life:  “I’ve been to Italy and saw horses across the sea in Albania.”  “The Germans were the first people on the moon.”  And “You’ve got to go to London.  You’ll love it.” For the record, you can’t see Albania from Italy even on a good day. Germans were never on the moon, and my father was never in London.

Only two years later in 2017, he was down to 6.  Highlights include: “My mother would be amazed.”  “Are you going on any vacations?”  And his favorite song, “Du Du Liegst Mir Im Herzen.”

Near the end of his life, he was concerned only with how far away you lived and what direction you came from.  “Diesen Weg?” he’d ask.  He was almost always wrong, which I found kind of sweet.  But in his final months, he wasn’t concerned even with that. 

I’m telling you this not because it’s sad, although it certainly is sad, but because of something else that he taught me in these years—something deeply important about what it means to live a meaningful life. We think we are defined by what we do—by what we do for a living: I’m in human resources.  My friend is in sales.  My brother handles mortgages.  My father was an artist.  That’s what he was.  But one day, Alzheimer’s took that away.  He didn’t want to paint any more.  And he was still Max.  The essence of him—who he truly was—was still there.  Over the years, all these stories he told about himself, all his memories—these events that are supposed to tell us who we are—Alzheimer’s took them away, too.  And he was still Max.  Still wonderfully, delightfully Max. 

In the end, he had no stories to tell.  He was just glad to be talking to you.  His conversations made little sense.  They were filled with made up words.  The important thing was to connect.  To interact.   Essentially, the story really didn’t matter.  The past didn’t matter.  History was gone.  He wasn’t concerned with tomorrow.  It was just this present moment.  Just being in it together.  In the Now.  Right now.

If there is any gift in my father’s Alzheimer’s, it’s that in stripping away all that we thought he was, what was laid bare was the best part of him, the most essential part—and it was love.  That’s what he had to give.  That’s all he had left.  Pure love.   That’s it.  That’s all he was about.  At the heart of him was love. 

I think in the end, that’s all that really matters.  That’s what his life and death taught me.  None of the rest of it—who you think you are, who others say you are, all the stuff you’ve done.  The brilliant ideas you had.  The good deeds.  The bad.  The regrets over what you should have done—none of that matters because essentially that’s not you.  What matters is this: did you give love and did you welcome love? 

Love is why we’re here in this moment.  May we continue to share it for as long as we live. 

Thank you, Pop. Ich liebe dich.

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