One of the first things my father said to me after my mother was diagnosed with early onset Alzheimer’s was, “Eric, we will never, ever, ever, put your mother in a home. No matter what.”
He gave me the super serious, heartfelt, intense tone and look as he said it. As if that statement was an absolutism. “We will keep your mother here at home with us and deal with this as a family…. Together…always.”
That was the plan for us with my mother. To always keep her at home. Never to put her in a caregiving facility geared towards Dementia-related patients. That’s what other people did.
That was our plan for years… until it wasn’t. It hadn’t reached that point yet, but that day was coming. Neither me my father spoke of it to each other. But we kind of knew.
I think we both kind of sensed it as The Time Thief’s plans started unfolding and the battle went into the late rounds. Or as they refer to it in boxing terms, “Into the deep water”.
Things were about to get worse, and we were barely equipped to handle the situation as it was. Especially with my father back home but still weak from his triple bypass.
Our living conditions on a regular basis, emotional stress level, and lack of general rest, would even test the healthiest team of caregivers.
My pop and I were a mess, and we didn’t even know it. It was all about getting through each day….and then the next….and then the next.
Whenever I meet somebody who has had the misfortune to have to deal directly with somebody in their family in the early phases of the disease and they tell me that they will never put their mother and a home, it’s hard for me to not get a little irritated.
They always say it like they are a little better. As if it was a choice. As if all the countless loving families who were all previously destroyed by the horrors of Alzheimer’s had a choice. As if those who opted for a care facility were weaker or didn’t love the afflicted enough to deal with it at home.
To be fair, it’s a common illusion that loving son and daughters have in the early stages of diagnosed dementia. Like a soldier during wartime who shines his boots every day still and can’t wait to be deployed. A soldier who has never been in a battle with live fire yet. A soldier who has never been “in the shit”.
To the ones with battle scars, that soldier isn’t worth a hill of beans. Their opinion means less than nothing.
Although I can somewhat empathize and might be secretly jealous of those shiny-shoed soldiers who still have a gleam in their eye, …still to this day….“We will never put my (insert close relative here) in a home” has to be one of the most ignorant statements I’ve ever heard in my fucking life.
Look, you might be one of the lucky ones.
Some victims are very passive. My great uncle Ferdy was like that. He became as docile as a family rabbit for pretty much the whole ride. Sweet Ferdy was like that for years as my Aunt Bernice tended to him every single day. Eventually, Ferdy just stopped eating and died.
To be honest, that’s pretty much a best-case scenario. Everybody reacts a little bit differently to the disease.
But the large majority of family units don’t know what’s coming. They don’t know how unrealistic, taxing, and horrific keeping someone home past a certain stage of Alzheimer’s can be.
I’ve seen large family units turn ugly on each other. All fissures and childhood resentments get exposed in their lifelong relationships with each other.
The sharing of duties both physically and financially is usually the catalyst to these disputes. Then there are decisions about “what’s best” for the afflicted, who gets to make those decision, and why they get the final say.
The ones who deal with “the shit” everyday build resentment against the family members that pay for everything but might not have the time to spend. It’s far too common a scenario and it makes me appreciate our little triangle whenever I hear about it.
But it doesn’t matter so much early on. You can’t tell someone who hasn’t been in the shit about being in the shit. Oh, sure. You can. But they won’t really get it. It will get weird if you try and explain what you go through each day. All they will offer is their pity and well wishes.
There is an old Scottish rhyme that says, “If wishes were horses, beggars would ride.” To me, those well wishes were rubbish, and caregivers are the opposite of beggars anyway. But we needed horses.
I truly believe that there is an honor in the worst of caregiving. Especially when it’s for a parent. Perhaps the most honor when it’s for one’s mother. The person who literally brought you into this world via pain, suffering, tears, and metamorphosis.
By “the worst of caregiving”, I do mean the worst. The kind of caregiving that not everyone can do. The kind of caregiving that no one really knows that they can do, until they just have to do it. There is an honor in that. There has to be. It’s a lonely honor though.
If there were an award for such an honor. I do have an idea of what it would be, hanging on the recipient’s chest. It wouldn’t be a Purple Heart, or a Silver Star. Nothing that glorious that you could break out and pin to your shirt for a parade they asked you to participate in.
It would be one, tiny bathroom tile, humbly and discreetly stuck to the shirt. Maybe even peeking out of the breast pocket. Nobody would really notice. There would be no parade invitations. But those that know would know. They would notice and silently nod in salute as they pass by the person with their porcelain medal on. The honored would nod back, in silence.
Almost ashamed to have received such a decoration. With no words exchanged.
That award would be such because the bathroom is the true battleground for caregivers. It’s full of traps, tests, and obstacles that need to be negotiated several times daily.
The bright, florescent lights, are quite sobering as the main lavatory impediments are three-fold:
The Shower – It’s hard to convince someone past a certain stage of the affliction that they need to take a shower. The whole process can seem daunting if they are not in the mood. But at a certain point, just like anyone else, they get a bit gamey. They might even smell the stink themselves, but they won’t put two and two together and will probably tell you that something in the house is rotten. They’ll say it a lot.
Bathing just needs to be done.
The ritual of showering usually kicks in once they realize what is actually happening. Like the brain is saying, “Oh, we’re showering now. I know this thing.”
The familiarity kind of comforts them. When they are like that and they are ready, you can just close the door and hangout just outside in case there is a problem or confusion takes over.
But one must be alert.
There’s lots that can go wrong in the shower. Just one twist of the knob too far to the left or right can result in shockingly cold water, or even worse, scorching hot water that can induce shrill screams and panic.
It can ruin the whole fucking day for everybody.
Lord knows I didn’t want to have to be in the bathroom to personally undress my mother. No one is comfortable removing their mother’s clothing. Even worse, if she was in the wrong state of mind, it could be problematic to say the least.
The Mirror and Sink – This normally mundane little station of hygiene can easily be the cause of confusion, unintentional vanity, self-reflection, or even physical harm.
Just the victim’s brightly lit reflection in the mirror can be jarring. They might not even recognize themselves. Or if they do, they might not like what they see and stare until they forget to cry.
My mother’s pretty stained-glass mirror by the front door experiment had taught me that a while ago.
Then there’s the toiletry contraptions. Only the necessities can be out and available. One toothbrush. One toothpaste tube. One soap (preferably bar soap), and maybe mouthwash if that’s what they are used to. At least until they start swallowing it.
That’s all that should be at the victim’s disposal for access at the sink.
Leaving a razor or any other sharp object around could be dangerous and won’t go well.
It’s just careless and sloppy caregiver work.
The Toilet – Ahhhh, the toilet. The crown jewel of the bathroom. For many people, the toilet is the only place that they can actually find peace and solitude in the house. They have kids, relatives, and spouses, all buzzing around the house.
The toilet is their refuge to be alone. Not at my folk’s house.
It was always the toilet that I dreaded the most.
Sometimes my mother knew that she had to go to the toilet, but she wasn’t sure what for. Which one would come out, #1 or #2. Sometimes it was nothing at all.
I would usually stand right next to the doorway with the door cracked. My mother would know she wasn’t alone, but I wasn’t invading her space.
I could smell it if my mom pooped. I would hope to smell it. If she pooped, it made me happy.
Kind of like an infant or a dog you would walk one more time at night. It’s a relief when they poop, because you knew they wouldn’t have to again for a while.
For a long time, my mother would forget to flush the toilet after wiping. That was fine. I was always ready to do that.
But as the process progressed, she started forgetting to wipe. My Ma would just put her pants back on and continue with her day. Until I got a whiff of the problem. Then the whole process of checking, cleaning, and changing her, would take a long time to explain and execute.
So, buckle up. It might take hours, soldier.
The only way I could be sure, is that I would have to basically check her work. I’d have to proofread my mother’s ass for clearance to put her pants back on.
That was never easy to do, even when she let me and it was easy.
It got to a point that I would frequently have to wipe my mother’s ass for her. It was repugnant, traumatic, and I would wish that on no one alive.
But it got worse sometimes. Much worse.
The only thing worse than having to wipe your own mother’s ass, was having to wipe your own mother’s ass and then she doesn’t recognize you.
It happens in an instant. On my knees, I’d glance up and see the fear in my mother’s eyes happen in real time. I’d see the optical expression shift, from a look of surrender to horror, in real time.
She no longer recognized me.
I was a now a stranger who was violating her.
“What are you doing?!”
“Who are you??!!”
“Don’t touch me!!!”
My mother would scream as she recoiled, moving away from me and trying to stand up as she scrambled to pull her sweatpants up.
“Mom! Please!!!” I’d beg with a folded-up square of partially soiled toilet paper in my hand.
She’d pull her sweats up more as she started walking out of the doorway.
“Please, Ma! It’s me! Eric! Your son!”
“Goddamnit, Ma. Please just let me finish really quick!
I swear I’ll be fast!”
Then she would stop for a moment, as she kept trying to tie the waist string up. There would be a glimmer of recognition in her eyes coupled with fear and distrust. Like maybe I was lying to her, but maybe I wasn’t. She was trying to decide.
“This doesn’t seem right at all.” My Mom would say, as she walked away, still trying to tidy herself up.
It was always something like that she would mutter.
I’d stand there, leaning against the wall, shaken, frustrated, and defeated. A dirty folded square of two-ply still in my right hand.
Then… The Time Thief would put the cherry on top. Adding insult to injury, my mother would stroll back over to me a few minutes later, recalling nothing of this living nightmare. She’d act like everything was fucking fine.
“Hey Eric…. What are you doing just standing there?”
I couldn’t speak. I could only stare back, baffled by transference of events and state of mind she dealt out in such a short period of time like the Devil’s personal card shark.
I’m sorry if this has been upsetting. But these were the battles my father and I fought while keeping my mother at home in the beginning of the deep water.
My pop would come home from work. Sometimes I would tell him about what I went through on a bad day, but usually I wouldn’t. He knew better than I did even. The last thing he needed was to hear about my atrocities before he even took his tie off.
Instead, I’d tell my dad what I got him for dinner that day. Maybe chill with him for a bit and hear about his day if my Ma was in bed. Maybe we’d just watch some baseball for a while.
We’d stay silent during the games, or my pop would bitch about the Marlins’ lack of talent like back in the good old days.
Then I’d drive on home. The air smelled so good outside each time I left that house after one of those days. I’d drive with my windows down and light a cigarette. No music in the car. No nothing.
I’d just listen to the wind as I’d reflect on the day while I tried to simultaneously forget it.
Once home, if I had a gig, I’d start packing up. Start getting my shit together. Start getting ready to perform for people and sing The Blues like everything was going to be just fine.
I’d get hammered at my gigs all the time.
People used to marvel at how I’d chain smoke cigarettes, drink tumbler after tumbler of whiskey on the rocks, and play harmonica better than anyone in town, all while singing with a badass band for three long sets a night. During our breaks I’d still be cracking jokes with a smile quicker than a switchblade.
Shit, man… that was easy. That was my release. My time to forget The Time Thief and how he knocked me around that day.
If I didn’t have a gig, I’d stop and pick up a bottle of Jameson on my way home. If I knew I still had just half a bottle waiting for me at my house, I’d have to stop for another. I knew I’d need more than that.
I’d usually pour a pint glass of the brown magic with some ice before I’d kick my shoes off. I’d take it with me into the shower and then I’d sit there under the steamy stream until the hot water ran out.
Sipping from time to time, I’d finish the tall glass before I was dried off. Then it was time to lay down and forget.
For many of those years I’d strictly watch horror movies. Preferably with zombies. Zombie movies were my favorite.
Maybe it was because they were so relentless. They just kept coming. They didn’t know who you were anymore. It didn’t matter to them. They just wanted to eat.
When the zombie’s heads would get blown off, I’d sometimes giggle in bed. When the regular people got killed, I giggled a little harder. Especially when it was a creative death. Like when their intestines got pulled out and played with, or a zombie in the back seat would bite someone’s ear off.
What a surprise!
I’d just lay there with my drink and my cigarettes, coughing and cackling as I’d watch blood splatter all over someone’s family portrait until I’d fall asleep. Always a dreamless sleep. The booze did that. That’s what I needed. I didn’t have time for dreams back then anyway.
