My mom found a piece of paper on my dad's end table. He writes himself a lot of notes--I saw one where he had written my mom's name in big letters and propped it up so he could see it. Yet he still calls her "hey." He has other ones with his address and birthday.
The note she found made her cry and when she told me about it made me cry too. If I can find out the full text I will. But basically my dad had written "My name is Bob Rizza. I am 66 years old. I can't drive a car. I can't talk. I can't remember anything." It continued with a list of other things he can't do anymore.
How can ANYONE make jokes about how when you have Alzheimer's you make new friends every day and it doesn't matter because the person with AD can't remember he has it, etc. My father knows.
How fucking sad is that note? And he wrote it to REMIND HIMSELF that he doesn't know anything. It wasn't addressed to anyone.
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This is a reminder that Alzheimer's disease affects real people, real families. My dad wasn't a monster, just a man whose brain was slowly eaten by a terrible disease.
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3 comments:
Dear Bert,
There was a time in the beginning, when my dad could remember. But it faded. Before it did, it broke my heart to see my father trying to cobble together information for maneuvering through his tasks of daily living. That's both the good news and the bad. The mercy for my father was found in his forgetting. The knowledge of me having to care for him would have killed him. The bad news is, I'm the one who remembers.
There is nothing funny, nothing comforting, and nothing positive about watching a loved one's world shrink - except when it's over. It wasn't until after my father's death I had time to get angry enough to start asking questions.
We have the disease, we have the scientists, we have the need. But we have no answers? Why is that? Who benefits from seniors being unable to care for themselves? Who likes things just the way they are? Who doesn't want things to change? Who benefits from this course of inaction? Who stands to profit from Alzheimer's running its course? What industries will be booming if nothing changes?
And then I have to ask - who cares? Who CARES? We have the money, we're the richest nation on the planet, choosing not to spend enough on scientific research to find the answers we need. Why?
And then finally, the questions fall to us. Why aren't we up in arms? Why aren't we in the streets? Why aren't we demanding our representatives take up this cause? Where are our advocates? What's missing? Where is the truth? Who cares enough to connect the dots of inaction with the dots of profit motive? Anyone?
Our inadequate response to Alzheimer's disease, as individuals and as a nation, is a joke. And this subject, as you've so honestly and eloquently stated, is really, really not funny.
Please keep writing and telling this story as it unfolds. There are over five million families in the same sinking boat.
Patty
Amen Patty!
Bert, I'm so sorry about your father's decline. That note is truly heartbreaking. I've been keeping track of him with your blog and comparing him to Grandma's journey. She's older than your father but at the moment refuses to admit she has any "problems". In my opinion she is in Stage 5 of AD and quickly heading for Stage 6. Unfortunately for her son, he will have to go to court to become her legal guardian just to be able to care for her properly. She refuses help in her home and won't agree to enter a care facility. However, legally she has the right to refuse whether she understands her plight and can care for herself or not. It's just sad and frustrating all the way around.
Bert, this really is terribly sad. I remember my father getting so frustrated because he couldn't retrieve a word, or figure out how to work the radio. He kept calling himself "stupid." But I also remember him telling me right before he died that life with my mom and their dog was still good. I hope your dad will find a bit of contentment at some point.
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