[daughter chronicles] Slice 11: Living with Vascular Dementia when you don’t have it.

Adrift in a rowboat on a cruel sea. Dumped on a deserted island. Isolated on the far side of the moon. Two amateur caregivers with our 84-year-old father, struggling to keep him from hurting us and himself. Out of people’s sight, out of people’s minds. 

That’s how it felt, at first.

Vascular dementia exacerbated by a stroke was going to kill Daddy, make his organs and body forget how to function. It stole his abilities, his memories, his life, and left him a 6-foot tall, 200 pound, 3-year-old juggernaut unable to communicate. He had served his country through 2 wars and for 21 years with honor, but the state and the Air Force left him to his fate because he had not lost a limb in battle. Medicare pulled out — he needed 24-hour custodial care, and medical care only intermittently. Medicaid might jump in only with his ailing bungalow gone and him sitting in a gutter with only the clothes on his back. 

Blows my mind.

His mental, invisible war wounds — many of them inflicted by his own troop mates before Civil Rights and afterwards, as he helped desegregate the U.S. military, the others inflicted by the job — don’t count.  

Would long-term care insurance have helped the situation? Yes. Would my parents have been able to afford long-term care insurance? No. When you’re a Have Not working and living in survival mode, you don’t get that luxury if you plan to eat and keep the lights on.

I didn’t want a hand-out, or something for free. We wanted and needed a hand up. A door of opportunity to earn what we lacked.

That door remained shut.

Elder abuse. The words terrified us. There was never a moment when Bro and I didn’t contemplate how easily, depending on the circumstances, we could be wrongly accused of it.

Daddy’s former rehabilitation facility — who had done their dead-level best caring for him and trying to improve his condition — sent a nurse to the house for an hour once a week, to track his terminal condition and answer our questions. I was grateful beyond measure. I always will be. But it felt like dancing in stilettos on pebbles along the edge of a cliff.

The documentation would be a testament to authorities of our efforts to give Daddy the best quality of life we could. Unless he fell or hurt himself one too many times. Then, it would throw suspicion our way. The nurse might think we neglected him or took frustrations out on him, and be required to report that.

Dance one inch the right way, you’re safe. Dance one inch the wrong way, your life is over.

Thank goodness, the nurses brought cheer and encouragement with them. An hour isn’t a long time, but they squeezed every bit of support and advice they could into it.

Daddy did his business right before a particular visit, leaving us no time to clean him and change his pull-up and clothes. I smelled it, so I know Nurse Mike did too during Dad’s physical exam. I kept waiting for an accusatory question to come, my nerves jittery as hell. It never did. He must have read into my facial expressions because as we unlocked the front door’s dead bolts and saw him out, Mike turned to me. “Don’t be so hard on yourself. You don’t have to be perfect. I’m amazed at the job you’re doing. Mr. Thornton’s very lucky to have y’all. Take care, now.”  

Was that true?

I realized I had been holding on to the moment back in December when that E.R. doctor inferred I was a useless daughter. I wanted to thank Mike, but emotion blocked in my throat.

Bro’s supportive hand on my shoulder said everything as we watched the nurse drive away in his dark SUV.

Relax. Just a little.

I didn’t know if I could.

Settling into a strict routine during the next few weeks proved invaluable.

We fed Daddy his breakfasts, lunches, suppers, and snacks at set times. Bathing times in his room (getting him into the tub or shower was inviting one of us to be injured in the process), changing times (with the exception of emergencies), and medication times followed suit. This way, him not being able to realize and verbalize hunger, wetness, or thirst didn’t matter because all of those needs were met regularly and on time.

We let him decide his bedtimes. Making him go before he was ready never worked anyway (file that under Choose Your Battles). He always curled up on top of his covers when sleepy. All we had to do was tuck him in, sit with him for a bit, and turn off the lights. Then, Bro would get some shut-eye while I stayed up and busied myself, or vice versa. Some hours later, we would switch.

Being natural night owls worked in our favor. Always having one pair of eyes open in the wee hours put the kibosh on getting any decent rest, but decreased our anxiety by a mile.

The results of all this structuring fascinated us.

Daddy’s incessant wandering cut down by at least a third.

During that third, we found him sitting in his wheelchair or on his bed, quiet, engrossed in whatever was on his television. Or sitting on the living room sofa. Or sitting on the floor. Just chillin’ for a while.

We dared not go out with him, not even for a quick stroll. He spent the better part of his days trying to get out of the dead-bolted front and back doors, and if he ever made it, with his ox-like strength we would never get or keep him in his wheelchair, or get him back inside without help and a fight. Mr. Military would dig in his heels, take us down, and escape. He’d done it before, at a cardiologist’s office.

Strangers happening by who saw us physically forcing an elderly man under duress would 1) whip out their phones and start a live video, and 2) call the police or the Division of Family and Children Services with suspicions of elder abuse. I know they would. Lose-lose.

So, we avoided outside like the plague.

Have you heard of concierge doctors? I never had, but what life savers. They’re like any other doctors’ office, but come to their patients instead of the patients coming to them. The concierge I found immediately came out and, after an initial examination, took Daddy on. They returned every 2 to 3 weeks, did blood work, helped with his quality of life, prescribed or refilled medications as needed, and Daddy did well with them. He didn’t even flinch when his blood was drawn.

Probably because the assistant doing the poking was so pretty. 🙂

Daddy’s wraparound Medicare coverage for veterans took care of the rehab nurses’ and concierge physician assistants’ visits, his continuing prescriptions, and wheelchair and hospital bed rental. That’s the least it should have done, as far as I’m concerned. I’m not ungrateful, but a 21-year veteran deserves a hell of a lot more than that. My opinion. Sticking to it.

I sat in a high-backed office chair in my room, next to my bed, facing my door. I worked on my laptop on an X-legged eating table, ordered new incontinence supplies for Dad, did research for a new novel chapter. The steaming blond roast in my coffee cup and my buttered toast smelled of heaven. My TV buzzed with a morning show I don’t recall, the volume low, and kept me company.

Subtle sounds of synthetic fabric against fabric in the hall reached my ears.

Dad. Awake. Early.

The back of my neck turned cool. He never moved between 6 AM and noon — until today.

He arrived at my door in his special pajamas that resembled normal gray sweatpants and a navy blue shirt, his face doused with curiosity and determination. He didn’t know what he was looking for, but he would when he saw it.

Bro was “Krogering” and would return with groceries soon, but until then, I was on my own with Daddy up and roaming, something we tried to avoid because he was stronger than me.

He stepped over the threshold of my door and came in.

We hadn’t Dad-proofed my little piece of the house or Bro’s, on purpose. We needed those spaces with our favorite things around us to keep us centered, to be the eyes in this storm. Too many things in here were a danger to Dad, and he to them. My fingers froze on the near-flush keyboard. I watched him, my eyes the only part of me moving.

My high queen-sized bed must’ve looked mighty comfy because he eased up on that thing with the satisfaction of a cat seeking a nap. Our eyes met. We stared at each other as he smoothed my scarlet comforter with a hand (a characteristic he had not lost, straightening things). His plain expression and milky cataract eye gave no indication of what he was thinking. With his legs hanging off the foot board, he glanced around, checked out what I was doing, what was on the TV, then lay down on his side, facing me.

He drifted off.

The moment turned magical for me.

Once again, I was a normal daughter in a normal world, on a normal morning, doing her favorite thing — writing — in her favorite place, having quality time with her dad as he slept like a baby less than 5 feet from her. Life was perfect. Nothing wrong with it at all. Dementia who? Dementia what? Daddy could not have forgotten my face. It had been a bad dream.

A warmth wrapped around my heart. I cherished having him near me again. I was his Baby Girl.

My fingertips skipped across the keyboard in time to Daddy’s peaceful breaths.

He woke after about an hour and sat up, content.

I smelled urine. He needed changing.

“C’mon, Daddy. Let’s go get you cleaned up.” I stood and reached for his hands, still nostalgic from our quiet time.

Bro was back and moving around in the kitchen. We three had no space to do our extensive Change The Pull Up Tango in my tiny room. We needed to be in our familiar spot — Dad’s room — to keep sanitary and so Dad wouldn’t get confused. “C’mon. Can’t have you getting diaper rash — that would be painful.” Not to mention, a new hell. With one of his hands in mine, I began easing him up.

I should have been paying attention. My Spidey-sense kicked in late. His free hand connected with the side of my head. The force of it dulled my vision to watery purple and gray sparklers.

He had no intention of leaving my bed. It was his bed now.

I recoiled away from him so fast that I tripped over the leg of the TV tray and slammed into the free edge of my solid wood dresser.

That wasn’t his fault, I reminded myself through foggy shock. It wasn’t. I’m the one who has to be more careful.  

Those next minutes sit unfocused, still.

I know I felt for my chair and sat back down in it, feeling like my face, mid-section, and left hip were flaming. A swelling irritated the outer corner of my eye. I remember numbness, my mind shut off and searching for an emotion. I remember Daddy glancing around the room, at my TV, smoothing my bright comforter down with his fingers, glaring at me with no recognition, silent and poker-faced.

After a time, an idea seeped through my headache.

“Daddy, it’s time for your pill. You ready?” I reached into the pre-made changing supply bag hanging from a dresser drawer knob and grabbed a medicine packet and a bottle of water. Low-dose Ativan, prescribed for him several times a day, but it made him way too ungainly on his feet so we only used it when necessary. “Here you go. Pill time.”

He opened his mouth, swallowed it and the water down as he always did when I asked, no problem.

In only 10 minutes, he began to look a little sleepy. I eased him up off my bed. He let me, calm.

My mind felt shut off the rest of that day. I couldn’t feel. And, one thing was for sure. For Daddy, this had to be No Man’s Land. There could be no more moments in my room.

At least, we’d had today.

← Slice 10: Living with Vascular Dementia when you don’t have it.