Cost of Care

Axios reports, as anyone caring for a person needing care knows, that home health care services are rising.

As someone who paid for home health aides for Burt for the better part of his five year affliction, I can attest how very expensive this already was.

If only… if only we had gotten long-term care insurance…. I don’t know whether to suggest that anyone young enough and healthy enough to be eligible, get LTC coverage.

I think it would help.

I understand the resistance to participate. I regretted our, Burt’s, and mine, unwillingness to face a possible future, the future we eventually encountered.

Quitting, is that really an option?

You know what, I quit

Based on A Prompt From My Caregiver Writing Group

In the rearview mirror when I watch my caregiving technique, I wince at this.

Yes, I would throw my hands in the air in dramatic exasperation. “I can’t, I give up,” I would say, making for the bedroom door.

You know what, I quit would not land the way it was intended. It would frighten Burt. It is a threat, afterall. It would not touch the rational and urge him to agree to whatever I deemed necessary this time.

It was the wrong thing to say, not just because it was completely ineffective. It was wrong because he did not need to have anything else scary in his life. He had the dementia and it depressed and diminished him in so many ways.

My job, my purpose wasn’t to coax hardship on him. I was supposed to, I expected myself to aid and protect him. Besides, “I quit” was never the truth of it.

A trip

My first trip in forever takes me to a meditation on when and where Burt and I had travelled. Our travels were circumspect; we stayed close to home.

We took the Amtrak to Hudson a number of times. Hudson is kind of the gateway to the Berkshires where I am going this weekend. On the Amtrak Empire Service.

Atlantic City was another of our destination; we went so often it seemed we were determined to sample all the accomodations on the Boardwalk circa 1990 to 2000. We went via train on about 4 of those visits.

What strikes me about these trips is the lack of luggage. That is to say, I don’t remember our having or carrying suitcases, backpacks, — gosh, no, no backpacks for sure- or any bags.

Trains to Saratoga, Boston, DC, I can’t picture us with a single piece of luggage.

On the occasions we rented a car, I can envision our popping cases in the trunk.

In my memories of our trainrides — we are unencumbered.

HiProtein O’s

I am still in that crazy but comforting space where Burt is present.

While eating protein oats, I am wondering if only I had had Magic Spoon high protein o’s for him  could I have prolonged his life?

Then I wonder if he would benefit from that; would he want his life extended; would he want to continue with the pain. And then I wonder if he was in pain.

I answer my questions. I knew he suffered so many losses not just throughout his life but during / because of his dementia. He felt the loss when he asked after his parents. He was always asking me where his mother was; he’d say “where is my father, I haven’t seen him.”

He was also sure I was never there for him. Even when I was by his side, he did not know it was me; he often wanted to know “why didn’t you say hello?”

Was he in pain when he felt so alone; when he wondered where his wife was, where his love was.

He had so many losses and he was so lost. I think, no I’m sure
Burt had had enough and that it was his time.

The  protein oats would not be a magic spoon to save him. He was ready to be allowed to go.

My memories and my love keep his spirit with me. It was time to let him go.

At home on a rainy day

As I sit here writing, and reading, I have a strong feeling that Burt is present with me.

It’s the first time, since the time I thought I needed to go check on him.

That had happened just a few days after he passed. It’s been months now, nearly eight, and this is different.

Today, I sense his presence as I write; I think oh boy, I want to read this to you. It’s as if he were here.

When I look up, I speak to the photos of Burt sitting on the table, watching over me.

Your story

Memory fades. Not just yours, my dear which was strangely altered and crippled by the dementia with which you suffered.

Everyone’s.

It, like the hearing of which  couples complain, can be selective. Or just inaccurate.

It was a gift to me when you recounted so much of your life story to me. Some of it stayed so prevalent with you even as you lost other touchstones that I heard Burt’s life and times over and over again.

You used it to woo me, this woman you did not remember being your wife; these flirtations were eerie and oddly touching.

Later in the course of your illness, details became conflated or just fanciful.

I am so grateful, Burt, that you were such a vivid story teller. I am grateful that I carry and share those memories, your memories. They mingle with mine and there remains so much to remember.

October 2013

Burt was so angry over the 2013 government shutdown that he refused to ever vote again.

I disagreed with his conclusion, but understood the reasoning. He felt it was a huge disruption.

The ACA prompted the Rs to stop work for those 16 days. We seem to have a similar excuse– health care– this time around. I know it was bigger then and it’s certainly bigger now.

I shared Burt’s disappointment in such blatant dysfunction. I never let that disenfranchise me. Burt last vote was for Obama. Just as well, he would have taken the first term trump win personally and would have felt slighted had he gone to the polls in 2016.

Later, in 2020, after dx, before the Biden inauguration, he got to yell his answer to the dementia question “fucking Trump.” It amused the ER, but I question the use of Who’s the President as a way to determine cognition. Did he know the answer was Biden in later visits? I can’t recall.

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