My dad has the A-word. Alzheimer's.
There. I've said it. It's out in the wide world. Do I feel better? Hell no.
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| Mom, Dad, and one Little Bro |
I have one friend who giggles on the rare occasions she asks about my dad. Not because she's insensitive, but because she has no idea what to expect when I answer. And from there, what to ask next.
We're at that spot with Alzheimer's where we were with the C-word decades ago. Nobody talked about cancer back then. Now? You can't turn on the TV or go online without an ad flashing up promoting cancer awareness, a fundraiser, and treatment options.
Options.
What a beautiful word. To think that so many people who were doomed to death the minute they heard the C-word now have treatment options, and in many cases, a very good chance of not just survival, but regaining a normal life - wow.
Today, right now, late 2015, Alzheimer's cannot be prevented, cured, or slowed down. Hear that? In America, over 5 million people have the disease and the numbers are increasing (according to the Alzheimer's Association). World wide? The World Health Organization says 47.5 million people have dementia, and Alzheimer's is the leading cause. An additional 7.7 million cases arise each year. Each year. What do these numbers mean? If you don't know someone who has Alzheimer's, the odds are extremely high that you soon will.
Who's at risk? Everybody with a brain. Yes, that means you and me.
Chew on that for a while.
Let's face it: most of the folks diagnosed with dementia or Alzheimer's as of today are beyond hope. My dad included. The science isn't there to help them. But science might grow to the point that those of us who look at the future with trepidation given what we know from personal experience, might have a chance.
Little will happen unless we talk about the A-word - that horrible condition when people who were previously rational and well-spoken can no longer find at least one word they want in every sentence. They can no longer find their way from the kitchen table to their comfy old recliner in the living room. They don't even remember they have a chair. Or a living room. Or even who they are.
Part of the problem is that we don't have a language around Alzheimer's. We know what to ask when someone receives a cancer diagnosis. We might not understand all the ins and outs, but we get the concept of biopsies, of chemo, of radiation, of surgeries to remove tumors, of reconstruction. We understand when the people we love are worn out or ill after a treatment and know that with time, hopefully the side effects will lessen.
Some people have the courage to ask how my dad is doing, and I'm so appreciative. But I have few words to describe how a man who still looks like he has a clue, has only a partial clue on one day, a pretty good clue on another, and absolutely no clue or ability to respond on another. How his eyes give away his state at any moment. That absolute blank look of no recognition. How they light up when he recognizes one of us, even if he doesn't know how we fit in his world. How some days he can pick up a glass of water and drink it, and others he doesn't know what water or a glass is.
I need to find those words. Not just for me, but for him and everyone else who struggles with a loved one who has Alzheimer's. So please keep asking.
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| Bobbie Sue Cammack Woods |
Why this bleak post from a banker turned crime author who usually sees the bizarrely funny in everything? Why now?
Because my dad's Alzheimer's killed my mother on September 12, 2015.
She was a relatively healthy seventy-five year old woman who should've lived to be in her nineties. Her death certificate cites some blah blah about cardiovascular issues, but my dad's Alzheimer's took her out.
She died from the grief of watching the man she was married to for fifty-five years disappear by inches, losing himself, her, and every bit of the world they'd built together. She died from the guilt of moving him to a nursing home when she could no longer make him understand "stand up", or "get in the shower" or "eat your breakfast". When he could no longer tell us where it hurt and when he forgot how to put his socks on, or even what socks are. She died from the hope and exhaustion of trying to heal him, when now, today, there is no hope.
What do I want by publishing this post? I want this f*cking disease to die. To stop dead in its tracks. But I can't have that. Not yet. So for right now, I'll take courage and compassion. For those with the disease and those who care for them. Because Alzheimer's kills them both.
I want the conversation around Alzheimer's to change, to get to the point where we are with the C-word. For people to have the courage to ask: what stage of Alzheimer's is he in, and what does that mean? Is she still eating solid food or has she moved on to blended meals and thickened liquids? Can he still walk? How's her speech? Did he know you today? Is she still continent and if not, have you found the right kind of diapers to help her stay as dry as possible?
I want people to listen to the answers. And then ask what they can do to help. Offer something as simple as sitting with an Alzheimer's patient so their caregiver can take a break. Offer to run an errand. Stop by the nursing home to visit a friend or relative with Alzheimer's. Take the time to talk to them and listen to the answers, garbled and nonsensical though those answers may be. Show them compassion and humor and respect for who you remember them to be (even if they don't remember who they are).
Stop being afraid of the dirty old man down the street with his fly open and the crazy old woman next door who screams nonsense at your kids. Look at them through compassionate eyes and wonder if, rather than simply being nuts, they have a need. And then have the courage to ask how you can help.
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Alzheimers sucks. Lived through it with my mom a few years back.
ReplyDeleteThe screwy part? We're living the memories and they can only live in the moment.
Stay strong, take care.
Yeah. Because I look like her, I became my mother who died seven years before, for her sister. Other than visit as often as possible, it was the only thing I could do for my auntie. For the same reason, my daughter became the mother of her father's mother. They didn't remember us but they remembered who they thought we were, and because it was the only thing we could do, we hid our tears and pretended - for their sakes.
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