Sunday, April 24, 2011

My Dad has Alzheimer's Disease

We found out about eight years ago. They think my dad started showing symptoms in his early fifties. Mom and Dad gathered the family and we all sat in their living room and were given the news. My dad's mom had also had Alzheimer's and we had intimate knowledge of the disease. My dad has early-onset disease, though so his is different.
Michael and I decided to go ahead and have babies right away so that they would get a chance to know their grandfather.
It still wasn't truly real though. You see, my dad is brilliant. Truly brilliant. Back when my mom was getting her masters in counseling, she gave him an IQ test and he tested as a genius. His vocabulary was unbelievable. He used to tuck me in at night and wish me sweet adventures in the realms of Morpheus. This extensive vocabulary and brilliance in general help him function through alzheimers. When he loses a word, he has plenty others in reserve.
He didn't study for the bar after law school. He was supposed to, but he was reading the Lord of the Rings books and he couldn't put them down. He finally finished at three in morning before the bar. Then he got up in the morning, took the bar, and passed it. He's amazing.
I can't write about this linearly. I can't really write about it at all. I'm just now able to talk about it. A little. But I don't want to. and I won't even read this over after I type it. You get stream of conciousness on this one.
The disease has been moving very slowly. We have all adjusted because it creeps along. Over the last few months though, the disease has been progressing much faster. I started working for my dad during the days during this time and so I have a very close view of how this is all going down.
My dad is smart and strong and charismatic and charming. It is heartbreaking to see him lose his independence, his swagger, his mojo. I feel so much empathy for him. And it is so hard to watch my daddy fail. And it's not his fault. This is a terrible horrible, cruel disease.
He is still himself. There seems to be a stigma attached to the disease and that is so wrong. Just because someone doesn't remember something, it doesn't make them less valuable or less smart. If he doesn't remember that he talked to you a minute ago, it doesn't make the conversation that you had less important or enjoyable to him. Call him anyway and live in the moment with him. Look him in the eye, give him a chance to hear you, don't use pronouns and enjoy who he is. He still has so much to give.
My dad is teaching me patience. He is teaching me to groove. I'm so type-A, grooving is a good lesson for me. Yesterday I asked his opinions on parenting and got his advice. He still has so much to give. It made both of us feel better.
I will tell you right now this is WAY different than it felt when my grandmother had Alzheimer's. She was so much older and we were not as close. It's just different. Early onset Alzheimer's is different. I am losing a parent slowly.
And my mom is brave and beautiful and patient and strong. We are all working together to live in the moment, stay positive and enjoy what we have. We are a team. We have to just do our best for right now and deal with later, later.
Because alzheimer's doesn't get better. There is no cure and the only way is down.

That's a hard reality to face. So live well, NOW. Don't wait. Just love and be and live.

And don't feel bad if you offer me support or empathy and I don't react appropriately. I just can't deal yet. Not in person. I just know I need to put it out there. I need to put it in this record of our lives. Because it is happening to us daily. And because people need to know. The people in our circle need to know in order to understand Dad, and to support those of us who support him. The people outside our circle need to know that lots of brilliant, successful people have Alzheimer's and it doesn't take anything away from who they are inside.
that's all I can write for now.


Mikey said...

I love you for writing this. He is a great man and you are a great daughter.

All my love.


Rob L. said...

Ditto what Michael said. I hope we're helping you to stay strong and positive; you're doing a great job helping your family get through an incredibly difficult situation.

Heather said...

Lots and lots and lots of love. I've witnessed how cruel Alzheimer's can be. Thanks for writing this. I know it had be really hard, but you said everything beautifully. And I learned some new things about your dad. What an incredible guy.

Love you.

rebecca said...

What a brave and beautiful post. Even though we don't get together much, know that I'm keeping you in my thoughts.

When my dad died (his illness was brief and his death sudden) we were all sitting in the living room with my half brother, his eldest son, and there was this long break in the conversation when we were just being together and then he said, "It just plain hurts doesn't it."

It does, and sometimes just saying it out loud helps a little bit.