[daughter chronicles] Slice 6: Living with Vascular Dementia when you don’t have it.

Photo by Charles Koh on Unsplash.

Most people spent midnight on New Year’s Eve ringing in 2019 at home, at a party, or watching Ryan Seacrest’s Rockin’ Eve. Bro and I rang it in in my car, on the way to the hospital because a second UTI had hit Daddy with a vengeance. His bladder was forgetting its functions.

This time, it took minor surgery and a catheter inserted in his lower belly to get rid of it. But, rid of it we got. My father was one tough bird and ready for rehab.

Who hasn’t heard the countless horror stories about nursing homes and rehab facilities over the years, on TV, in the papers, across social media? Settling him in rehabilitation not connected to the hospital stood my nerves on edge. We’d have to be on our game. We couldn’t let him be mistreated in there.

Turns out, unlike a lot of people and their families in this position, we got lucky.

For one, our facility assigned a visible team to Daddy that met with me (social worker, nurses, dietitian, physical therapist, speech therapist, occupational therapist). They mapped out a treatment plan, continued to meet as necessary and kept in touch with me by phone. Secondly, they had an incredible exercise/therapy room surrounded by glass — anyone could see what was happening in there at all times, even standing outside the building. Thirdly, they transported him to his follow-up doctor appointments and met me there, at each office, without fail. And transported him back to the facility when Daddy and I were done. Fourthly, the floor staff kept a real eye on him and saw to his needs more than I expected. The only thing I didn’t like was them leaving him to eat on his own (he’d lost his ability to use utensils), so more often than not, I’d find his food spilled on his tray, on his bed, or on the floor when I came in his room. Which meant he wasn’t getting nourishment.

But, with so many patients, they probably had no time and no choice, you know? So, Bro and I tried to be there to feed him instead.

Making his way around his room or up the corridor, in his assigned wheelchair or on foot, always made Daddy happy — until he found he couldn’t get outside or hang out in other patients’ rooms. I understood his irritation and didn’t blame him for it — he didn’t realize he was sick and in treatment. He was some unknown place against his will, and that pissed him off. Most of the time, he cooperated. But some days, he wasn’t having it and acted out.

Like the day one of the staff insisted on waking him up for an impromptu sponge bath. Poor thing ended up with his wrist in a brace for a couple of weeks for his trouble.

Sitting in on a therapy session one afternoon excited me. I hadn’t done that before, witnessed how two of the therapists worked with Daddy.

I had no idea I would also learn to keep my distance from him.

As the session began in Dad’s room, the female occupational therapist (I’ll call her OT) and I sat in an informal Q & A talk in two chairs near the side of Dad’s bed. For some reason, the tall, soft-spoken brunette reminded me of Hilary Farr of Love It Or List It fame, so I kept grinning at her. She didn’t appear to mind, and grinned right back. She probably decided I was a little koo-koo for Cocoa Puffs, but no threat. 🙂

We watched the male physical therapist (I’ll call him PT) fasten the belted double harness around himself and my dad, coax Daddy up off of his bed and steer him around the room with firm, gentle hands. Daddy responded without hesitation or reluctance, as if PT had pressed his OKAY button. The rapport between them pleased me. When they came back around the room and PT unfastened the safety harness and sat Daddy back down on his bed near us, my heart was thumping and smiling and turning little flips.

“Good job, Dad.” I gave him a joyful two thumbs up. “Good job!”

He grinned at me for a second or two, but then his face turned sad, hurt, furious. Tears flooded his eyes. He raised a shaking finger and stabbed the air in my direction. “Don’t you ever— you— you— ” He balled up a fist, came up off the side of the bed and lunged a step at me. “You! Don’t you ever, EVER again!”

I could do nothing but stare back at him. What had I done? Time slowed for me, though in reality, things happened quite fast.

PT wasted no time putting himself between Daddy and me, while OT got me up out of my chair and out of the room. Her hands felt reassuring as she said, “Come, let’s get you to safety” or something like that. She tried to comfort me and give me hard facts as we sat in a living room at the end of the hall. Whether my father had seen me or someone else in front of him, his reaction wasn’t him. It was the disease. For the time being, I needed to keep some distance between us whenever I was alone with him. Be on guard. Be watchful. Just in case.

Only after she’d left the living room to check on Daddy did I allow myself to break down.

Daddy wheeled out of his room and into the hallway a short time later, meandering around, enjoying his surroundings. The nurses and staff gave him cheerful hellos as he passed them. I could still watch over him today from afar, at least. I could pretend he still knew me. I could pretend he trusted me, that I didn’t trigger something awful for him.

I expected him to turn around after a certain point. He didn’t. When he’d traveled half the distance to the living room and me and was still coming, my hands started to shake. Go back. Please, go back. He looked so content. What would happen if he saw me again? Would his face change? Would he try to come after me?

Please, God. Don’t let him see me.

He was maybe ten steps from the door to the living room when a nurse with a lovely island accent, walking down an intersecting hallway, noticed him and stopped in front of his wheelchair. “Well, ‘allo there! Are you enjoying your stroll? Is it time for a change? I think it probably is. Let me help you back to your room and we check.”

She wheeled him away.

I pushed out the breath I’d been holding, unclasped my near bloodless fingers, grabbed my tote and slunk out of there.

Just thinking of returning to the rehab facility terrified me. I couldn’t help it. I broke.

The little girl in me who’d never been separated from her father after his retirement from USAF active duty, who’d never lived more than 30 minutes from him as an adult, who’d never been estranged from him over anything, not even once, knelt down, put her hands over her ears, squeezed her eyes shut and closed herself off.

She helped me build a mental wall between myself and the place.

Auntie, a cousin, and Bro stepped up to the plate and watched over Daddy in my stead.

As I write this now, even though I know I’m only human, I’m ashamed of that.

Near the end of January, a team meeting brought me back to the facility. I refused to consider going on Dad’s floor, but the meeting was in a different area and missing it was unthinkable to me, no matter what. I remember feeling feverish, my stomach burning and threatening to disgorge its contents. I remember the receptionist and strangers asking if I was unwell, so I must have looked a hot mess. I tried to relax as my social worker started things off.

Her report, the doctor’s report, and those from the rest of the team got my attention with a quickness.

Their detailed reviews came down to one excruciating point: Daddy had reached a plateau in his treatment. His cognition skills hadn’t improved much and weren’t expected to, though they weren’t ready to give up yet. They’d continue giving their all in the hopes that they were wrong. But there was only around a month of Medicare insurance left, so Bro and I needed to be prepared.

We needed a personal plan for Daddy’s eventual discharge.

That evening at home, I hunkered over a bowl of comfort food — my homemade ramen with sliced eggs. My mind churned this way and that over the new issue upon us.

I admit, I made a lot of comfort food during this time, when I had the energy. Homemade ramen with sliced eggs and sliced chicken especially. Piping hot.

Daddy needed 24-hour care, compliments of his stroke. He was a wandering juggernaut that didn’t — couldn’t — respond to verbal commands, could only respond to his damaged brain’s impulses. He couldn’t gauge danger to himself or others. Utensils and dishware posed problems for him. He could no longer bathe, groom, or dress himself, and had no idea what “going to the bathroom” was. He didn’t recognize me or Bro anymore. He remembered us in whatever time in the past his mind had regressed to, but in real time, we were strangers to him.

Vascular dementia had stolen my father’s lively personality and flushed his inspiring, hard-won life down the chute. It had snatched his vibrancy and all that he was from his children and the world.

Somehow, I had to process that while figuring out his long-term care.

Medicare only offered extended help if a patient required skilled nursing care (defined as care from medical machines and doctors in a hospital). Dad would need a memory care home, which was considered unskilled, so after rehab, Medicare would bow out. Medicaid would only help if he had no house and was lying in a gutter with only the clothes on his back. What?

With us being Have Nots, that put our asses right in a proverbial sling.

So much research to do. Precious little time to do it in.

Slice 5: Living with Vascular Dementia when you don’t have it.
Phosphorescent brain coral’s appearance has always fascinated me. It’s like a human brain lit up with activity. Photo by David Clode on Unsplash.

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