As I start to write this blog, it's hard for me to pull together my thoughts and emotions about this book. My heart aches as I read it and can only wish I had read it BEFORE Dad was diagnosed. It might have given me some more insight into what he was experiencing. I wasn't his main caregiver and lived his daily struggles, frustrations and issues through mom's daily frustrations, struggles, and issues. Being a caregiver for someone with Alzheimer's is not for the ill hearted. It is not for sissy's. You must have the back bone of steel and the patience of Job. I watched mom struggle through the entire sordid experience of dad being diagnosed to the wretched disease killing him (though most Alzheimer patients don't actually die from the disease but some other reason).
Still Alice is about a well-educated, well respected Harvard professor. Her life is teaching and researching. In her early 50's she's diagnosed with Early On-set Alzheimer's. The book is written from her perspective as this disease takes a hold of her and changes her to be a person she doesn't even recognize.
So many times while reading her experiences through the book I could relate it back to dad and what he may have gone through. The forgetting where you are, what day it is, why you're leaving, what word you're looking to use, etc. But what hit me the hardest is how much I wish I had been more present with Dad and more accepting of this disease. It goes without saying that when a person you love and adore comes down with Alzheimer's that person eventually becomes someone you don't recognize - as much as they may not recognize you. It was frustrating for me to witness, and I never took a second, often enough anyhow, to think about how frustrating it was for him.
My heart ached for Alice and her family as they struggled to come to grips with this disease. Some of the things her children say to her, I said to dad. Some of the "he's just being lazy and not wanting to remember" feelings I had. I remember there were times Mom and I would discuss whether he's "faking" it or was it just a good day. After reading this book I totally understand that there were good days and bad days and as much as I felt and saw the good days, so did dad.
The parts that were hardest to read was how her husband, the caregiver, started to treat her. Caregivers, often, get the raw end of the deal. They become under appreciated by the Alzheimer's patient and take the brunt of all the "abuse" brought on by Alzheimer's. I felt bad for John, her husband, and yet felt like I wanted to slap him sometimes because of his lack of understand or caring for Alice. Because I now saw from Alice's eyes and how it made her feel. I John's actions and the way he came to grip (or it could be argued not coming to grip) with Alice and this disease were spot on. Those of us who have walked in his shoes, or the shoes of his daughters, understand all too well the need, or want rather, to not accept the diagnosis and just brush it under the rug and maybe it'll go away. Then one day the rug is gone and you have to deal with it. And somehow you find the strength, God knows where, and you do.
I don't think that I'm alone in the "not understanding what they're going through" bucket. How could we? We still have all our faculties. We still can form sentences, remember dates, remember people, etc. Still, I wish I had been more patient with him and at least "try" to understand. I know there are times when I walk into the kitchen to get something and can't remember for the life of me what it was. I feel the mildest of frustration. If that was my daily life, I'd go mad.
Of course hindsight being what it is, I see now that a lot of my negative interaction with dad was fear speaking. I was just waiting for the day when would he stop recognizing me -it played constantly in my mind - and I dreaded it and feared it. What then? Would he still be dad? Who would he be to me? Would I love him anymore? Or any less? I didn't have the answers then, and am not sure I have any answers now. I have a vivid memory of leaving Arizona one Christmas, hugging dad and thinking, my dad, the man who raised me, is no longer here. His shell is, but he had long since left the building.
There's a part of the book where Alice gives a speech to a bunch of doctors, not as a doctor who treats Alzheimer's but as a person who has it. It moved me. It made me understand even more what Dad experienced. Give it a read. If I could ask anything of you readers, if you encounter someone with dementia or Alzheimer's give them patience and love.
"We, in the early stages of Alzheimer's, are not yet utterly incompetent. We are not without language or opinions that matter or extended period of lucidity. Yet we are not competent enough to be trusted with many of the demands and responsibilities of our former lives. We feel like we are neither here nor there, like some crazy Dr. Seuss character in a bizarre land. It's a very lonely and frustrating place to be.
"I no longer work at Harvard. I no longer read and write research articles or books. My reality is completely different from what it was not long ago. And it is distorted. The neural pathways I use to try to understand what you are saying, what I' am thinking, and what is happening around me are gummed up with amyloid. I struggle to find the words I want to say and often hear myself saying the wrong ones. I can't confidently judge spatial distance, which means I drop things and fall down a lot and can get lost two blocks from my home. And my short term memory is hanging on by a couple of frayed threads.
"I'm losing my yesterdays. If you ask me what I did yesterday, what happened, what I saw and felt and heard, I'd be hard pressed to give you details. I might guess a few things correctly. I'm an excellent guesser. But I don't really know. I don't remember yesterday or the yesterday before that.
"And I have no control over which yesterday's I keep and which ones get deleted. This disease will not be bargained with. I can't offer it the names of the US presidents in exchange for the names of my children. I can't give it the names of the state capitals and keep the memories of my husband.
"I often fear tomorrow. What if I wake up and don't know who my husband is? What if I don't know where I am or recognize myself in the mirror? When will I no longer be me? Is the part of my brain that's responsible for my unique 'me-ness' vulnerable to this disease? Or is my identity something that transcends neurons, proteins, and defective molecules of DNA? Is my soul and spirit immune to the ravages of Alzheimer's? I believe it is.
"Being diagnosed with Alzheimer's is like being branded with a scarlet A. This is now who I am, someone with dementia. This was how I would, for a time, define myself and how others continue to define me. But I am not what I say or what I do or what I remember. I am fundamentally more than that.
"I am still an active participant in society. My brain no longer works well, but I use my ears for unconditional listening, my shoulders for crying on, and my arms for hugging others with dementia. I am not someone dying. I am someone living with Alzheimer's. I want to do that as well as I possibly can.
"Please don't look at our scarlet A's and write us off. Look us in the eye, talk directly to us. Don't panic or take it personally if we make mistakes, because we will. We will repeat ourselves, we will misplace things, and we will get lost. We will forget your name and what you said two minutes ago. We will also try our hardest to compensate for and overcome our cognitive losses.
"My yesterday's are disappearing, and my tomorrows are uncertain, so what do I live for? I live for reach day. I live in the moment. Some tomorrow soon, I'll forget that I stood before you and gave this speech. But just because I'll forget it some tomorrow doesn't mean that I didn't live every second of it today. I will forget today, but that doesn't mean that today didn't matter. "
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