this is our life

It’s more than just the symptoms

In the beginning, I only saw the symptoms.

I protected us from the damaging effects of his impulsiveness, poor judgment, and diminished cognition.

When he was aggressive, I did what I could so he didn’t hurt himself, me, or others.

I met his agitation with the “I’m sorries” I had learned from counselors easing me on this journey; he wasn’t buying that and saw through it for the pablum I had made of it.

It took me much longer to feel the losses he felt. Empathy was lagging as my judgment reeled from the shock of unusual and odd behaviors.

Compassion began to kick in as I saw what he was losing.

He’s lost everything, all control over his life, his money, his daily activities, his emotions. As Lewy has progressed and he’s declined, he’s lost touch with his losses.

He can’t fully trust who he is. Much of his resume of major life events is altered by his memory.

He’s not sure who I am. Sometimes, he is unsure which wife I am. Sometimes, he’s sure he’s speaking with the new one or the nice one. He is surrounded by imaginary friends and dead family.

He’s quick to anger. He suffers little disappointments with the impatient tantrums of a child.

The moods shift out of his control, sometimes spreading sunshine. He soaks up attention and affection.

His dementia is more than just the symptoms. It’s not the mishearing; the misunderstanding cause and effect; the slipping in and out of time; the tall tales, and sometimes violent ideation; the repeated questions and non-stop talking. It’s more than the extreme anxiety and neediness.

It’s more, and it’s so much less. It’s so much sadness and loss.

The good news in the grip of all this is that he is still resilient. We have many more miles to go on this journey. His strength will help see me through.

At the start

When Burt first presented with his array of bizarre and unexpected symptoms, I simultaneously felt [that] “I couldn’t” and “I got this.”

My current state of mind is very similarly disposed to having it both ways.

Often, it looks like he’s also on the same page. “Got it” and “I just can’t.”

After a recent bout with a drop in his blood pressure that literally brought him to his knees, “I can’t” looked like it would triumph.

For me, despair at our situation was foremost and, of necessity, well-hidden.

Burt was in a wheelchair rather than on his trusty walker. His aide worried he would wobble and fall. I had him stay in bed on Sunday after being unsure I could keep him from toppling on Saturday.

It looked like grim times for us. Burt tried hard getting himself up and into bed one evening; his exercises with his OT were limited.

Next day, I came home to find him in his big brown chair. His walker had replaced the wheelchair. It was just the 6th day since his tumble.

He worked hard to get up and out of his recliner. After 4 practice runs at it, he was holding onto the handles of his walker and heading into his bedroom.

Even in his confusion, he’s a serious and determined guy. I’m impressed. And hopeful.

What’s changed

Our lives have been turned topsy turvy by Burt’s dementia. Lewy Body has no timeline, but it does twist time.

Obviously, Burt has been changed by his illness. Not so obviously, so have I

The question: How has my pwd’s dementia changed me? has a long answer.

I so want to say I am a better person for Burt’s situation. Am I?

I have learned a great deal of medical terminology and some symptoms. I am open to learning, but I always was. Open, that is. Although not really to all the medical stuff that informs our relationship now.

I am also open to being a better person, of course. Who after all isn’t?
I am less resentful. That’s odd.

Definitely less snarky.

I am more open to learning about Burt; there are a lot of his qualities to explore. I hadn’t known so much about who he was, had overlooked the best of him.

He was always smart, and in the framework of his diminished cognition, the smartness shines through differently.

I always loved him, but it was less intense. It wasn’t as necessary.

I am more capable than I thought I could be. God, how I wish I weren’t and wish I did not have to be.

Defiance

Burt is pretty much in his own world. As long as the hallucinations aren’t scary, I am told there’s no need for me to fret. Or medicate.

We shall see. The multiple mes disturb and unnerve me.

Other aspects are amusing. Burt tried to send me on an errand the other night. When I said, “I can’t leave you alone,” he responded he’d be fine with all these people here.

His behaviors are far from perfect.

I have described him as a thrower because he tosses plates or spoons or food. One day, my soundtrack for this activity was a predictable “now pitching for the NY Mets.”

These glimmers of the bad boy Burt are welcome through this morass of confusion. His defiance can be funny, and when he jumps in to join the laughter, it’s a treat.

Getting him to eat is a struggle. When he was unwilling to take the food we offered, I volunteered, “eating involves chewing and swallowing.”

As I stood over him saying, “Now swallow,” he removed the little ball of food from his mouth. He threw it underhand some 2 feet away. With that, Burt announced, “My hand slipped.” His laughter was infectious and delightful.

Mid night thoughts May 7th

It’s a pernicious disease that has outsmarted us both, and Burt and I are pretty smart. Lewy Body Dementia has made its wily way into our lives. I have been split into fragmented personalities some of them adored some abhorred others tolerated.

Burt is never fully alone except when he dreams I have abandoned him. He has the half dozen or more wives problem to resolve, but nothing is ever resolved.

Solutions, and lord knows he works at those with painstaking precision, elude him. Just when he comes to a conclusion, he decides to hold on to that other wife. The crazy one.

He doesn’t mind all the people peopling his world, but it confuses him. He’s confounded when he realizes mom and daddy are dead, but they still will come to work on weekends when he doesn’t have an aide.

The confusion over who I am can be frightening, too. When it is, we need the intervention of a trusted doorman or our neighbors. His brain and his actions are affected by all these disturbances.

The distortions of memory, of mood, change his realities so that he and I live in an unreality. No logic can rewrite the scenarios as they unfold. It is a Kafkaeasque fiction, a nightmarish Ionesco play.

We live in the genre of movie I always most avoided, the horror film. I face him as his sweet wife and turn to return as the nasty one or disappear altogether til I reappear as my more welcome self. It’s hard. On both of us.

So many of us

Burt, in one of the many moments of uncertainty about who I am, “met” a woman in our living room.

As is his wont on these occasions, he interrogated me thoroughly. There was nothing I could say to convince him he was talking to me, his actual wife.

As he does with all the Tamaras, he flirted considerably.

In trying to give him an anchor for identifying who I was, I had stirred the Capgras pot. Once again. It’s not clear to me what I should say when Burt asks, “Who are you, little girl?”

When he “found me” later in the evening, he had buyer’s remorse. I think he worried we two would meet and compare notes. She looked like me, he told me. “And get this she was born where you’re from, too.”

“I don’t know how she got here. What do I tell her if she shows up again?” I said I would be with him. Relieved, he said, “Oh good. Stay with me.”

In every case, he always manages plausible deniability. And I find one more reason for my online handle, “the real Tamara. “

He never denies that he has “other wives,” however. When I was on the phone with his daughter, he said tell her. I asked if it was three or seven. “There’re 15 now,” he reported with pride.

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.