this is our life

Blame takes a turn

While I’m on the subject, I realize that I can not only blame Burt for his illness. I can pin his death on him, too. He got sick. I adjusted. It was hard. It felt like a different kind of leaving every day.

As if that wasn’t bad enough, Burt died. He left me. That absolutely has to be his fault. Right? Yeah, of course [crazy lady.]

One of the things I marvelled at was Burt’s capacity to have it both ways.

I now, more soberly, reflect that that’s how our brains all work. We can hold more than one and often conflicting thought or idea. Those ideas and thoughts are not always rational. What’s going on in our heads, even without benefit of losing our minds to dementia, can be ridiculous.

Burt knew he was losing his mind – for a sad time, when he would pronounce he had dementia: Do you know what dementia means was his mantra. It was a relief when hallucinations were just visitors; the fraught nature of his disease was no longer his to solve.

You don’t get Lewy Body Dementia because you didn’t exercise or do puzzles. It wasn’t Burt’s fault that dementia is a long drawn-out distressing loss. My loved one had dementia, was ill with dementia, and I lost little bits of him. I lost him little by little. He, Burt, was blameless.

Blame

The subject of blame is proving an inspiration of sorts. I know that blaming Burt for his illness is [was] ridiculous. I also know that it was not an absurd reaction.

I bet that if your spouse received a dementia diagnosis, you might be angry. Not just at the diagnosis but also at him/her. I was angry at him for not exercising. Just for example. Blame the victim.

I was angry with him in the same irrational way I rail against the noise of construction when it interferes with an audio book. Yet, I developed an incredible patience for all of Burt’s quirks.

He had many idiosyncracies way before the dementia made it obligatory, but as his illness went on, he was sweet, he was funny. My heart filled with love for him.

He was blameless. Naturally. Obviously.

Blameless

Burt, due to his diagnosis, has been blameless. Lewy comes with a pass and Lewy was with us for the past five years.

Leave it to me to feel that there is significance in my faulting him for the soap dishes.

I had allowed for the normal irritation at a spouse who made an errant purchase to bubble up. I blamed Burt for the stains on my sink. Stains caused by the rusting metal on the bottom of the pretty dish.

Blaming, that was the key to our setting up an equal footing.

It was how our relationship can be remembered outside of Lewy. My blame did that. Burt had not just been the unwell spouse; he was so much more, for far longer.

I could remember being pleased and irritated by the day-to-day of our mutual past. I could and I would.

Blaming gaming

Burt brought home these metal soap dishes; they were handsome until water hit them, then they rusted.

I blamed Burt for their high maintenace needs and the ugly stains their little red-blistered bottoms left behind.

This morning as I moved a dish to try to clean under it, I realized that I still blame him. It’s his fault that he brought them to my sink counter.

I can’t bring myself to dispose of them; they’re pretty, except for the ring underneath, and Burt picked them out. Do I blame myself? Of course not. Come to think upon it, let’s ask them’s that made ’em and sold ’em, flaws and all what they were thinking.

These soap dishes are neither my fault [of course not] nor Burt’s. Some idiot thought it was a good idea to market a product so faulty as to stain surfaces and melt soap – another design issue as water accumulates under the bar.

Adding insult to injury, this inadequate product was just good looking enough to fool the buyer.

Caveat emptor, eh?

Love and marriage

We’ve talked about love during caregiving, but I have not been forthright about sex. We don’t talk about that in polite society as my mother would assert.

A visiting carer who came by to see Burt was not so circumspect. She suggested I should connect with someone in circumstances like my own. “It’s not cheating,” she assured me; “don’t think of it as cheating.”

To be honest, sex with anyone, even with my beloved whose confusion made sex impossible, would have been a ridiculous distraction. It would have proven a diversion. My focus was needed elsewhere. Caregiving takes a lot of concentrated energy.

Burt, like many suffering from dementia, did have bouts with hypersexuality; these were a muddle.

Eventually, he calmed down until talk of sexual contact was a kind of conversational gambit.

I would say, “if I took you up on those suggestions, you’d run for the hills” and he would smile. We were on the other side of this behavioral issue.

Sex, like so much else we’d lost to dementia, was no longer among the common shorthands of our marriage. It was another loss I mourned.

Between the ED not uncommon in dementia patients, the lack of filters, and the discombobulation of the hows of love making, you might feel a nice cuddle is all the intimacy you’ll have. That and the love in your heart for the spouse you’re losing.

There remained a lot of affection between us. I hugged him often, even over the bedrails, we kissed regularly, and held hands as much as possible. The last few days, I let go of the touching as well, but before that PDA was definitely our style. It had always been our style, just ask the driver who yelled at us get a room many years ago when he went by on 11th Avenue.

There will always be memories.

Take care

It hadn’t occurred to me until my friend T said it. Burt chose me. He knew I would be there for him. I am always uncertain when I say that, although she assured me it was true.

There were all those times his wife was missing. Did she go to Walgreens, she was always at Walgreens?

Not everyone chooses well. Burt did. I had too. He had, until, his illness, before dementia made him the one needing care, taken care of me.

I knew, despite his declaration that if things were the other way around, he wouldn’t be able to care for me as I was caring for him, that he would have done his damnedest.

Our story

We met at a bar called Tramps on Friday, May 3rd in 1990.

There had been a phone call on Wednesday during which we had made that date. Technically, we met on May 1, 1990, I guess, but according to our Beck love lore, it’s always been May 3rd, now 35 years ago.

On Friday, I was at a table in Tramps, 21st Street near 6th, with a no alc beer in its bottle when Burt arrived. On time, at 6pm, I think, maybe 5 or 5:30. We spent the rest of our evening walking, making our way east and north across the isle of Manhattan.

I was thinner on that May night 35 years ago than I had ever been and so I wore a pink pencil skirt. Burt remembered that skirt with genuine nostalgia years later. By our wedding date in May 1992, I was no longer thin.

In the last 5 years, whenever I would acknowledge my being fat, he’d say no, you’re not that fat.

It strikes me as sweet and I am appreciative of how love can distort, and of how much more than the physical is [or, was] between us.

Well, now, is, definitely.

I do know that when we were younger, though we were never young together, my weight did bother him. We have come a long way, indeed.

Burt and I talked during our many hour walk that long ago May night. I do not remember our conversation, nor what all Burt told me.

I am sure Burt told me a great deal; he was a true talker. And a grand charmer. One thing I do remember his saying was I really like you.

His sincerity could never be doubted, I think, although I was surprised. I was so surprised that this declaration of like stuck with me.

I like you led to I love you, and there were numerous such over the coming years. We were an affectionate pair.

The other memorable exchange between us occurred at dinner at the Metropolitan. We had walked alot, and I was hungry.

After we ate, Burt asked if I was aware how fast I eat. I said “super Olympic” and he laughed. My answer lasted in the files of our stories for years.

Also notable was that the driver in Burt’s homebound cab told him that perhaps he, Burt, would marry me. He had told him what he’d said to me; I like her, he said.

We had not parted without making a date for Sunday. It was my suggestion we go to the Boat Basin restaurant in Central Park. Burt is impressed that I offer to pay for the meal; I paid my share but on Friday, I hadn’t had money with me.

Due to my recent tour with Debtors’ Anonymous, I did not carry credit cards. Burt paid for my salad on Friday. He liked that I took responsibility on Sunday for brunch.

On Sunday, we went from the Boat Basin to a place to rent a tuxedo [I’m coming to it] and then to Burt’s apartment. Another long walk, proving Burt’s words in his personal ad true. He’d said he liked walking. Against my better judgment, we did have sex on this second date. The rented tux represented some bit of a future for us; Burt was going to join me at a charity gala.

When I had issues with some of Burt’s issues and broke up with him, he avowed that the black tie gala was a committment.

Good thing that he insisted on being honorable. I fell in love on the dance floor at this event. I invited Burt to dinner with some friends and it was during that meal, I found that I adored him.

Ups, downs, sideways, for the rest of our time together, and now afterward, adoration proved to be my uplift and my home. I think it went both ways.

Burt not only truly did love me, he made me feel loved. I carry that feeling with me all the time.

Grieving

There are so many words but

I have only used loss; I’ve only

Said “I’m mourning” or “I mourn”

I have said “I miss you” and I’ve

Mentioned that as I missed you,

You were also missing. I knew

You were lost and losing little

Bits of yourself over time which

I noticed you had lost. A whole

Concept, a man-made construct

Time was lost to […]
Grieving

Unexpectedly

Had I mentioned this in an early posting? I remembered it in a support group today and thought it might help with a loved one at the start of dementia.

Burt, I know I did mention this, dove into dementia with both feet from the get-go.

His symptoms were astonishing and a little overwhelming, and I was urging we visit a neurologist.

Burt’s resistance seemed par for the course, but upon discussion a deeper reason emerged.

I succeeded in coaxing Burt into an appointment.

Burt was sure, however, that a neurologist needs to operate to get inside his brain.

I had never entertained that such a fear was possible; I did address it as best I could.

I turned to the 24 hour call center at the Alzheimer’s Association for a voice of authority. Of course, it wasn’t enough, but I followed up with other authorities in our life. A trusted neighbor confirmed the fact that neurologists don’t do that. I think I had the neuro’s NP speak with him.

Everything with Burt was subject to negotiation, but knowing what he was thinking eased the process for me.

I realized that what he might have been thinking could seem very far-fetched to me. It was very real to him. I was so glad that he knew I was not just by his side, but on his side.

We had had to negotiate the date on which he would agree to see a doctor in the first place. Now I was negotiating around this fear he harbored of what a diagnosis entailed.

I wonder, in retrospect, where I found the patience to negotiate.

Honestly, I mean, wouldn’t an argument have been more my style?

I am surprised that this bit of wisdom emerged for me as Burt was struggling:

Don’t assume anything, least of all what’s going on in your partner’s head. Having dementia must be very scary, be there to assuage and reassure.

Reminders

When I open the cabinet, there’s the espresso cups we got from drinking, sadly, bad coffee at Matto. Burt pleased me by going with me and suffering through a cup, then escorting me to the subway. I don’t remember where I was heading, but it was a lovely morning.

This is pretty much the train of my memories. The objects in the pantry or the mug closet remind me of Burt; memories flow from there.

The first reminder, the little cups which were mostly for Burt’s use, of course made me smile. Burt’s espresso cups. From there, that day came flooding back to me. And then, a lot of lovely mornings with Burt.

What would I do without these lovely reminders, stepping stones to my memories, I wonder.

I know something else would bring a legion of good memories. They would rush at me, and offer me a new good morning.