Today is National Caregivers Day.
I wasn’t aware of this recognition until I received an email from Caregiver Support at the VA. Veterans Administration.
Why am I mentioning this? Because most people don’t know that I’m a caregiver unless they know me “in person”. The “online me” doesn’t usually share this. I’ve found it awkward… and I hate that I’m hiding part of my life but it’s not something that comes up in casual conversation.
Believe me when I say that I know, for sure, that “it’s not all about me” but I decided that today’s a good day to say a little about it. Here goes…
I’m the caregiver for my Vietnam Veteran husband. He was exposed to Agent Orange in Vietnam (‘68-’69). I didn’t know him then.
His exposure led to a diagnosis of Parkinson’s Disease more than ten years ago. Then he developed the beginnings of Dementia after that. To be honest, it’s a blur. I can’t remember the dates. I’d have to look up his VA appointments.
His Parkinson’s tremors and other symptoms are controlled by multiple medications four times a day and a Deep Brain Stimulation unit that’s implanted in his brain. Or, is it technically in his “skull” but not directly in his brain? I want to be medically accurate, but again, there are so many appointments, so many details.
His Deep Brain Stimulation unit is controlled by a battery implant in his chest and a remote control device.
The Parkinson’s and dementia were fairly vague in the beginning. Forgetfulness. Impatience. Balance issues and stumbling. Then he had three fender-bender accidents in the space of a month. His response time and concentration were definitely “off”, so he could no longer drive.
He didn’t take this easily. He swore driving was not an issue, so you can image the arguments that accompanied “taking the keys away.” He began to express his anger and frustration in the form of acting out towards me. Mainly, yelling at me that he could drive and “where are my bleepin’ keys?” Of course, he didn’t say “bleepin’”.
Soon I couldn’t leave him alone because he began to do things like leaving the stove turned on, or forgetting to shut the front door. The Veterans Administration connected me with services that provide respite care so that I could get out for grocery shopping and other errands.
This resulted in constant arguments about not needing a “babysitter”.
I did my best to help him manage his new reality. When his first caregiver arrived, he was hostile towards the caregiver. More like cold, than hostile, but certainly not accepting. I was able to get respite for three afternoons a week and gradually he accepted it.
When we moved to a new home that we share with one of our sons and his wife, the objections began again, but we’ve passed through that stage. We now have help five afternoons a week.
He has had issues with falls due to the Parkinson’s. Step 1 on that diagnosis was a walking cane, which he refused to use. After a couple of falls, he got a walker, which he also refused to use, and still doesn’t use. Then, a wheel chair—which even he realizes is needed to go longer distances that are difficult or inconvenient to walk. Like the parking lot at the VA to the hospital. Or from the parking lot to a public event. The wheel chair is the folding kind that’s one of us pushes. It’s not user-propelled.
It’s scary to watch him wobbling along to the bathroom. We stay close. You can lead a horse to water…
Our latest hill to climb has been his insistence that he can stay up late watching TV without supervision. Of course, he can’t, so he’ll occasionally argue aggressively about that. In fact, television is his only activity of choice and that’s what he does during his every waking hour. He can’t use the remote accurately, but pushing the buttons makes him feel like he’s in control of something. He can’t remember what he was watching yesterday or this morning—but neither can I—so that’s an insignificant speed bump in the day to day.
He forgets to brush his teeth unless I’m with him to supervise. He never flushes toilets. He’s mostly non-verbal, although he understands almost everything. When I speak to him, he never turns his heads in my direction. There’s more but if you know someone who’s handicapped, be it you or a close friend or relative, you’re aware of the challenges.
The positive aspects are good, so far: he still bathes himself in the shower built for handicapped ease, he’ll comb his hair when reminded, he still dresses himself. His bed has a grab bar to accommodate his weakening body, and he uses an electric reclining chair in the living room that helps him get to his feet.
As a caregiver, it’s challenging to be always on alert, listening for a PTSD event during the night, trying to comprehend what he wants, etc. But caregivers manage. We try to get a break by watching a movie or finding time for a hobby. We may not be handicapped, but we’re always navigating a rough patch through something or other. I know that it could be a whole lot worse. I understand that those days are coming.
Thankfully, the Veterans Administration is wonderful. Reaching out with medical support, physical therapy as needed, and much, much more. We see his Vietnam brothers in the waiting rooms along with the veterans of more recent wars.
It’s tough. General William Tecumseh Sherman was right. “War is hell.”
Thanks for listening.