Wednesday, September 21, 2011

In honor of Dad on World Alzheimer's Day

Today is World Alzheimer's Day, and I want to honor a very special person in my life who is suffering from this awful, soul destroying disease, that affects not just the person who is diagnosed with it, but the entire family who loves them. That person is my father, seen here with my dog, Benny, someone who can still bring him joy and comfort just by showing up.

I was in therapy myself when I first started worrying about Dad. His side of the family has a strong family history of Alzheimer's, or dementia or whatever you want to call it. My grandma Mollie had it, her mother Clara had it, her brother, my great uncle had it.

Back in 2005 or 2006, I started noticing that my father, who was extremely eloquent and never at a loss for words, suddenly was. Our conversations during those years under President Bush were usually about politics. Dad was a lifelong Republican and I'm a "recovered Republican" - or what critics of my political columns call variously "an America-hating communist, a socialist, a terrorist -lover" or my all-time favorite, someone who is "using the American way of life to destroy the American way of life and the rest of Western Civilization in the process!" But I noticed during those conversations - which inevitably devolved into arguments - that Dad would suddenly pause and struggle to think of a word - a word that normally would have tripped off his tongue easily. The kind of vocabulary that someone with his background in government would have to hand as easily as we writers would have manuscript or revise or adjective. And given the family history, it scared me.

It's hard to talk about this stuff though, to the person and to other people in the family. "Uh, hey guys, I think Dad's losing it." I was fortunate that I was in therapy, because I could talk it through with my therapist, and she was able to tell me something very important - that if we got Dad on some drugs like Aricept early enough, it might prolong the onset of the more serious cognitive decline. She also gave me the name of someone at Greenwich Hospital who specialized in elder issues, who my parents could go and see. It was that knowledge that gave me the courage to mention my concerns to first my brother, then my mom, and finally Dad.

I took him out to lunch at the Bulls Head Diner, and told him that I was worried about him. And he admitted that he was worried about himself. It turns out that everyone was worried, but no one wanted to worry anyone else. We were all living on own little islands of anxiety, until finally one of us swam across the sea and brought it out into the open. The thing about bringing the worry into the open is that you can DO something about it. While there's no cure for Alzheimer's, I'm convinced that getting Dad on those drugs early slowed his decline, giving us a few more years, particularly precious for my kids so that they can remember Grandpa (or "Grandpoo", as he's affectionately known) more as he was than as he is now.

Towards the end of last year, however, the decline started to accelerate. We had to deal with the very painful issue of his driving, which I talked about in a column here. Understandably, he was upset and angry about having his license taken away. He still talks about it sometimes.

Earlier this year, there was another marked decline - this time involving a personality change and violence. The day we'd been dreading, but thanks to my brother's foresight, he and I had been planning for financially for over a decade, arrived - when we had to make the incredibly difficult decision to move Dad to assisted living. I remember visiting my Grandma Mollie when she was in a nursing home, and it was so awful and depressing - I couldn't bear the thought of Dad being in a place like that. But we found somewhere that is different - for what it is, it is wonderful. The rooms are light and sunny and there are always activities going on. Dad had been going there for outpatient adult day care for a few months, so he was already familiar with it.

But's not home. And he might be out of it, but he still knows that.

A week or so ago, the awful Pat Robertson said yet another awful thing, for which I will never, ever forgive him: Divorce your spouse with Alzheimer's. It made me furious beyond measure, and to me, is yet another example of how sometimes (not all the time) those who follow the letter of the Bible's laws completely miss the spirit, and end up being some of the most godless, least compassionate people on the planet.
Last Friday afternoon they had a Dog Show for all the residents where Dad lives. Although Benny isn't an "official" therapy dog, he certainly brings joy to Dad's life and a smile to the faces of all the other residents he encounters. I brought him for the dog show and he won "Waggiest Tail". Dad was VERY proud.

Right after we took this picture, they had a singalong of Patriotic songs in honor of Constitution Day. My dad spent decades working for the US government, and he served in town government when I was growing up as a Republican. He is one patriotic dude, let me tell you. He used to know every word of every patriotic song there is. When we started singing, he was proud - so proud that he had tears in his eyes, and saluted every few bars. But HE COULDN'T REMEMBER THE WORDS. It made me want to cry, but I didn't want to cry in front of him. But that's what Pat Robertson doesn't understand. My dad is NOT walking dead. He may not remember my name. He doesn't remember my kids' names. He remembers the dog better than he remembers me most of the time. But he's still at his core, who he always was - a patriot and a man who loves his country. And his face lights up every time he sees me. He still loves me. Alzheimer's has just robbed him of his words to express it. I'm grateful to G-d that I still have mine so that I can express my love to him, and that, Pat Robertson is why you are so very wrong.


  1. Hi Sarah.

    I am building a website as a resource for people whos lives have been touched in any way by dementia. I am a full time carer for my mother who has dementia. I would like to include a link to your beautifully written blog on the site when it goes online in a couple of weeks, if thats ok? You can read my blog here or contact me on twitter @dementiacarers. Ta, Jon.

  2. I would be honored. Best to you and your Mum. I lived in the UK for 15 years - 5 in London and 10 in Dorset (near Dorchester.)