this is our life

Spinning yarns

It’s far more relaxing to spin plans with Burt rather than struggle. Is it an effort?

Creating some very peculiar scenarios can tax my imagination. It doesn’t try my patience as much as resisting his.

Today, he’s both insistent that we take a train somewhere to get home and that I left him alone for 3 nights.

In the latter story, he bewails not just being abandoned but also being penniless. Both are rambling tales – both literally and in the telling.

We resolved the need to take the train or bus, but now are headed to get the mail. Maybe.

One other theme that’s haunting us for the moment is the incident with this week’s substitute aide. Apparently, the police were only involved because of the age issue; she was too young for me to leave him with. Shame on me.

There’s also his job hunt. “Why did I lose my job,” he asks and answers by relating that “the girls” didn’t want to work weekends. I said so your job is dependent on them.

I try to keep up. While in rehab, he dictated elaborate business-type plans that puzzled his roomies’ wife as much as me. I just went along “to get along.”

Throwbacks

This many years in, I have assured lots of precautions will keep us financially safe. And me in control. We have the requisite legal papers in place as well.

Despite that, when Burt, in a flashback to earlier capabilities, said, “I’ve never lost money,” there was a little shiver of fear.

He was urging investments, and I was reasoning out tabling discussion for the morning.

His bedtime scenario required my taking notes. Mine looked forward to an early and relaxed sleep.

Know that there is no win in any such dialog, but my go-to is usually to say yes and ignore.

This is usually effective.

After all, tomorrow is another day.

That’s just silly

Getting sillier is becoming a salvation.

There’s some serious stuff going on. Of course there is. I need to rise to the occasion to combat the many ills that come with Lewy.

I also need to find ways to smile and stay sane. If texting “Tony the tiger great” is an indication of the latter.

Looking for the funny in the sad.

Even Burt, who takes matters pretty seriously, was laughing a bit this morning.

Bitter Sweet

This is what I shared with a group of my fellow LBD spouses about our 32nd anniversary:

It’s the anniversary we’re not celebrating this Friday. I am so glad we did have his 84th surprise party and my birthday with friends when he was able to engage and enjoy.

Burt’s current downturn makes those recent celebrations that much more poignant.5

The other day, we had a substitute aide (uh oh). He called me at the gym: “This time, you’re going to jail. You can’t have someone too young to stay with me. She’s 11.” Then she was 1100, then 55. Whatever, the cops weren’t letting me off. I was willing to be amused.

The aide, by the way, did an amazing job deescalating this bonkers (yes, I use the clinical term) by reading to him. The script was the various books of appreciation I had made for him for his birthdays. (He said she read to me how much you love me blahblahblah.)

All still pretty funny. Later in the evening, the comedy routines subsided, but Capgras visited.

I wonder what it is that turns on the recognition switch. “Thank god you’re here. Where have you been? I’ve been calling you.” His relief at those moments is real. And it makes my heart go pitterpatter.

My gratitude journey: a tale of before

In reviewing the very unsatisfactory week we’ve had recently, my mind flashed back unbidden to days my love and I spent in the park.

The memory was of a time long enough ago that there was no suspicion of dementia and illness.

Burt wanted to take me to a spot where he had been in Central Park on his own. It was by the water in the west 60s or 70s. He was right.

There was something idyllic and magical about sitting in the sheds that jutted out over the lake.

That memory took me to a long long list of happy remembrances.

I am grateful to recall all the good times we shared. Sure, we indulged in a variety of extravagances, but I embraced and cherished the small, simple times.

That touch of spring

Last night Burt, thinking I was his (need I say deceased) mother said he was getting married to a girl from Carolina. He said his wife didn’t love him; she used to but it’s died out.
Well, that did it!

After a while, I fessed up to being his wife and said I was hurt.

He backpedaled as fast as he could and wormed his way back into my heart. (Not that he was ever anywhere else.)

I am not able to handle not being recognized with the grace I would like to muster.

Burt’s Capgras (I have 5 or 7 wives he says. Isn’t that too many to deal with? No, I like it.) is maddening particularly since I am tasked with figuring out the names of all his hallucinations and superfluous wives.

It’s really an evil unpleasant disease that robs our loved ones from us – coming and going.

Interesting that in his appeal for my mercy, he mentioned an occasion in which there had been a fire only he came to realize that he imagined it. He hunted for the word hallucination to explain that episode and linked it to his imagined infidelity.

I am intrigued by how he processes matters. Hallucinations are definitely a difficult symptom. As I have said elsewhere, if I weren’t so deeply saddened by his condition, I would find them fascinating.

My gratitude journey

A few short months have passed since I thrilled at how well Burt was doing. He truly enjoyed his surprise birthday. That was in November when a group gathering to celebrate him was a very welcome experience.

He made it through my birthday party in early February.

It made his decline by the middle of March that much more dismaying.

His current level of awareness also involves a good deal of depression. He seems dragged down in mood as well as in logic and cognition.

And I think he’s just so darn bored. At this point, he’s not a self-starter in any way. If I don’t feed him, food just sits waiting til the bowl is knocked over by his fidgeting.

Likewise, he won’t look at a picture book or magazine even if I place it in his hands.

It’s hard to determine what will be of interest to him. For instance, I tried playing some music. It was clear that he wasn’t receptive to the classical. He said yes to Nat King Cole; this came with Bobby Darin and Sinatra, among other throwbacks to our youth.

After a while, it seemed like he was not enjoying the sounds. Wouldn’t you know as soon as I turned Spotify off, he asked for music.

It’s exhausting having to self-start for two.

My point in this post was not to launch that (obligatory) complaint but rather to be grateful.

I am grateful that the challenges of his care are not insurmountable.

I am grateful for those months when he was perky and engaged.

Gratitude is also a gift.

Why, indeed

Atilla My Hon after his exertions (aka tantrums and unpleasantness) on an outing this afternoon.

My struggles this Friday afternoon, facing a weekend alone with my cranky love, focus on figuring out why going out into a beautiful sunny day causes so much agitation.

The agitation makes me fear for his safety and my ability to assure his welfare. I am worried whether I can provide him the best care.

It was a sudden fit of agitation that caused him to fall two weeks ago. He was eager to get out after a long period indoors. As we got into the lobby, his mood took a sudden turn. [See, I’m so emotional, baby, for more.]

His distress was clear, although I didn’t see his reaction coming til it was too late. Once outside, I thought my calm* tone could soothe Burt and direct him to a quiet sunny spot for a rest.

* Yes, that is I Tamara, who remained calm.. well up until he fell and even then. I had a lot of help from our friends in our building.

He responded by shaking his walker and pushing it into a barrier wall. He succeeded in knocking himself over.

Fortunately, he was not hurt except for a scrape on his leg. Fortunately, our neighbors came to the rescue. Many of our neighbors.

I am grateful to each and to all.

My conundrum is as to why going for a walk can cause Burt so much upset.

He reacted in the same way today when his OT, aide, and I went out with him this afternoon.

He was cranky from the start. His OT and I were subject to his scorn and abuse. He said his feet and his legs hurt. He said he was never going out again.

Only his aide escaped his displeasure. His general anger worried me so much that I wasn’t sure I would make it back home without the aid of his carer.

She kindly proffered her help.

Again, I am grateful.

Who?

We were guaranteed that our LBD spouse wouldn’t forget who we are, but that’s a little complicated.

Burt has such extreme Capgras that he asks me who I am many times each day. Also, he complains about the “other one” who forces him to eat.

The syndrome is one in which your person with dementia feels there are more than one of you. The imposter me “looks just like you,” as Burt has often reported. My duplicate is just one of his hallucinations, but it affects me powerfully.

The upside is that he’s frequently mad at “her” and I come up smelling of roses.

His job search

Burt has obsessed about working for a while now.

I was encouraged this morning when he seemed ready to relinquish his dream of a job. Like everything in our lives these days that didn’t last long.

He developed a new interest in taking in laundry after that and conflated his cousin with the guy who has a job for him.

My expectations of not having to keep burrowing down the rabbit hole are always met with disappointment.

After nearly four years riding with Lewy, I should know better.