[daughter chronicles] Slice 12: Living with Vascular Dementia when you don’t have it.

Photo by Claudio Schwarz Purzlbaum @ Unsplash.

Vascular Dementia had 7 Forgots from my once vibrant, once fully-functional father under its proverbial belt, so far. Forgot how to talk, write, read. Forgot how to bathe, to use the toilet. Forgot his house. Forgot his kids. All in a matter of 3 months.

What the next one would be was a waiting game.

Every time I fed him, I prayed he hadn’t forgotten how to swallow, or forgotten his body needed food. Every time we changed him, washed him, clothed him, I prayed he hadn’t forgotten how to stand up. Following him around the house on tiring exploration jaunts, I prayed he didn’t forget how to walk. Every time we put him to bed, I prayed he didn’t forget how to breathe.

Every time a nurse or concierge physician examined him in his bedroom, I prayed all of his internal organs remembered how to function.

Things could either progress quickly, or take years. Timetable unknown.

Well, my dad has always been One Tough Old Bird, and he wasn’t about to give that title up any time soon.

He, Bro, and I had survived together for four weeks, give or take. Four more weeks came, and went. In that time, he gave up not one more Forgot that we could see. Not one.

The damned disease was going to have to work a hell of a lot harder.

Vascular Dementia did not know who it was messing with.

My father gave me my relentless Neat Freak gene.

Holy cats — I can walk into a room that I arranged and if one thing is a centimeter off from where I put it, my eye catches it and my brain turns into the Earl of Lemongrab. Lack of my mind’s idea of “balance” drives me crazy — only because I can’t not notice it. Believe me, I’ve tried. LOL!

That’s just the tip of it, and I’d always wondered why I was like that. It took reaching my 40s and noticing for the millionth time how Daddy never left a wrinkle in a towel, or always straightened anything crooked — multiple times, for that light bulb to come on.

Daddy’s girl, indeed.  ❤️

Rivastigmine had been in our lives since February — a cognition-enhancing medication used to treat dementia associated with Alzheimer’s and Parkinson’s Disease. (Daddy didn’t have full-blown Parkinson’s, but some symptoms and mild tremors had been with him for several years.) I used gloves when handling the 4.6 mg transdermal patches, as instructed, because of the medication’s potency. I could not let it touch my skin, and the effect it had on “3-year-old in a sandbox” Dad clearly explained why.

The times I put a fresh patch on him — in a strategic place on his back, where he couldn’t reach it — and when he needed a new patch were like night and day. You could tell the level of Rivastigmine in his body right away just by walking into his bedroom.

Two hours after fresh patch on: Hospital bed made up, pristine, military corners and all. Books arranged in neat piles on corner chair. Loose change he had taken to counting arranged in neat stacks along the edge of his TV’s table, by coin. Wheelchair parked by his favorite window, seat cushion smoothed down. Clothing he’d pulled out of his dresser drawers folded on top of the books.

A place for everything, and everything in its place.

Two hours before time for a new patch: Pillow, blankets, and sheets off the bed, strewn along the floor. Loose change, books, and clothing (and a lamp or two) thrown across the landscape and piled in a mountain on his bare mattress. Sometimes, he would sleep with the whole lot, under a blanket. Wheelchair upended and jammed as far as it can go into his shallow closet, seat cushion nowhere to be seen.

Like a bomb had gone off, in his sandbox.

The old Daddy was still in there. Straightening his surroundings and making his presence known with a little help from a friend called Rivastigmine, it seemed.

Again. Vascular Dementia. Did not know who it was ****ing with.

“Dad?” My brother’s voice turned troubled. They stood beside Daddy’s bed, belly to belly in a bear hug, Bro steadying him from the waist up while I cleaned and changed him from the waist down, as we’d already done many times. Our extensive Change The Pull-Up Tango. “Dad, are you losing your grip? Hold on to me. Don’t let go.”

From where I sat on the bed’s edge, with an oversized wipe in one hand and ointment smeared in the other, all I had to do was glance downward to see that Daddy’s knees threatened to buckle. I didn’t understand why.

Through everything, his formidable strength had never waned.

“Sis? Please hurry. I don’t know what’s going on— Dad? Dad! Keep holding on to me. Help me hold you up!”

I sped up, double-time.

The desperation in Bro’s voice and Dad’s bare, wavering legs had my heart pounding in my ears. As a heart patient because of a dissected aorta, no way could Bro support all of Dad’s weight. Thank heavens there was only urine to take care of, not a bowel movement, or I never would’ve made it. Adult pull-up up. Powder in. The jumper that prevents him from yanking his pull-up off fastened. Pants up and tied. Done.

“Sis, I can’t hold him!”

“Okay — take him down to the bed!”

I held onto Dad’s waist for dear life. Bro kept his grip around Dad’s chest as the three of us tipped over like a big oak being felled in some forest. We crashed onto the mattress.

What had happened? All we wanted was for him to be all right.

“Daddy?” We peered down into his face, and I almost screamed. He stared at the ceiling, unblinking, his frozen expression a mask of terror, his body board-stiff. Nothing we said or did got a response. We couldn’t even feel him breathing. Don’t be dead. Daddy, please, don’t die! Come back!

Bro grabbed the phone to call 9-1-1. That was when Daddy’s eyelids relaxed, the brown of his good eye warming. His breath came again, calm and even, and his muscles softened. He rested.

“Is he okay?”

“I don’t know, Bro.” Both of our voices had gone up an octave or two.

I stroked Daddy’s age-sunken cheek with my fingers. He looked at us, took a deep breath, and struggled to sit up. We helped him and sat with him for a while, until the beat of our hearts returned to normal.

This terrifying thing happened again, a few days later, the exact same way. What the hell?

We described it to the rehab nurses during their next visit, in detail. “His blood pressure suddenly dropped when he stood up,” Nurse Judy told us. “That’s what it sounds like.”

“Yep. Low blood pressure.” Nurse Mike chimed in. “Y’all did the right thing. Just give him a few minutes to recover. Don’t hesitate to call EMTs if he stays in distress, though.”

Ah. Sort of like syncope, right? Bro had experienced that himself after recovering from his emergency open heart surgery a year before this, and wasn’t allowed to drive for a good while because of it. Having a familiar explanation made what had happened seem a little less scary. We didn’t feel good about it, but we did feel better.

To our relief, there were no more blood pressure drops after that. A good thing.

Amazing events of the week to come would blow our minds.

Slice 11: Living with Vascular Dementia when you don’t have it.
Photo by Abby Anaday @ Unsplash.

1 thought on “[daughter chronicles] Slice 12: Living with Vascular Dementia when you don’t have it.”

  1. Wow, I cannot relate to the neatnick household. Whatever the exact opposite is of being a clean freak is–I’ve got it. Slobnick might be the right phrase. I could use a little more of what you and your father have. But I have lived my entire life in a constant state of self-created chaos. I think I would find an overly organized house anxiety inducing in its own way. And, apparently, my son takes after me. Now it’s a battle to cross a floor most days. So, I’m slowly starting to adopt a few preventative measures so I don’t break a hip by slipping on one of the thousands of pieces of papers or crayons that literally litter the floor.

    And the tale of the blood pressure drop sounds terrifying. For some reason, I was picturing your father as a frail being. But from the difficulty you and your brother had, he must have been a heavy/large man if he brought both of you crashing down with him. And that you and your brother worked together to care for him was quite touching. My family is not so close or caring. I kind of envy that your father had you both to be strong for him.


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