this is our life

A Lament

Let’s face it, I have me-time even when I sit with Burt. (How do you think these blogs get written?) Most of the time, there are no pressing and time-consuming needs.

There’s a little quiet conversation. It’s not challenging or sustained.

Often, it doesn’t even include me as Burt’s focused on some fantom friend. His aide and I love when he gets goofy and laughs at his own jokes.

There’s the feeding which feels good because giving food is a nurturing act.

There’s sitting and listening and scrolling.

There are no more excursions into the park. Just weekends at home sitting.

So I have time. I have me-time. What I miss now is the we-time.

It’s an aggressive disease

Long ago, that’s what 4 years feels like, Burt needed only companion care.

Or, I needed it for him so I could feel he was safe and not alone while I took time for myself. I always knew the time for myself was a necessity if I would make it through the slog.

Along the way, we went through a large number of caregivers. Burt was picky, and I respected that he needed to spend his time with someone he liked.

Some agencies sent an aide without interviewing the family. Some sent a nurse along on the first day to assess the care plan.

Others had a vetting procedure. On one such visit, Burt really liked the nurse and social worker who came to see us.

He was enjoying the attention and asserting himself. His banter was verbally aggressive. Burt made it clear that he would be the boss. Burt’s aggression was mostly performative.

The agency turned us down.

They said they couldn’t subject their caregivers to any hostile behaviors.

I told the agency’s coordinator I felt like my child was denied a place in kindergarten.

I also, more seriously, wondered why professional home health aides weren’t able to handle a common issue in dementia care.

Aggressive behavior is often seen in dementia patients, more often in those with Lewy Body.

Burt’s PT left when Burt hit him on the arm. Under similar circumstances, a substitute aide told me Burt couldn’t do that when he tapped her.

At the next PT session, Burt was back to his cooperative self. In the instance with the aide, I held his hand while she turned him.

Burt fights being turned. Not hard, but with resistance. He sometimes curses his “attacker,” or lashes out, but is conciliatory when we identify ourselves. “We’re just trying to help you, Burt.”

Words of comfort or reassurance usually defuse his confusion and anger.

That early rejection from the agency had me worried that there would be no respite on this journey.

I am grateful that that is not the case.

Changes

Burt seems less restless, even calm, despite the endless chatter. He’ll say he’s scared, but it isn’t urgent.

In other words, the prediction that this declining state would be “easier” has come to fruition.

His aides can give him water or juice. He’s amenable to eating if they feed him.

Burt now entertains himself in conversations that require no response.

Since he’s in his bed, I don’t have to worry that he’ll fall; I don’t need to hover while he shuffles about.

There are issues with being bedbound. The pressure sores require daily bathing. I have to slather lots of cream over him.

There are other disadvantages. Burt doesn’t move much, so he experiences more frequent constipation. He’s lost a lot of strength in his legs.

He’s disoriented.

Communication between us is pretty rudimentary.

It’s hard to ascertain if he needs or wants something.

It’s lonely for me. I think he finds companionship in the stories he spins.

Since he is more confused than he had been, less aware of his surroundings and needs less moment to moment attention, I can find a little more time for myself.

Right now, that’s my plan. That’s the new focus. I need more time away from my grief and sadness.

Taking time off for myself even on the weekends (which Burt and I had reserved for just us) is another small point of pain. Changes and losses. Losses and changes. And cope rhymes with hope.

Expert advice

I am no expert on this disease. I play one around my house, as it were. I am as flummoxed by new behaviors as the next hapless caregiver.

We have been thrown under this bus. Each of us.

The onset of dementia in your partner can lead to confusion. His and mine. Burt and I are both lost in the whirlwinds of his LBD.

I am an observer. We have both been stricken. I often say that dementia is a disease built for two.

We’re in this together. I told Burt that a few weeks ago.

As confused as he is, he seemed to appreciate what I said.

He knows me, he knows me not

«That’s not a very LBD thing,« my support group leader mentions. It’s not, and I resent that.

There had been «a promise« that I would not be forgotten.

The word was people with Lewy Body Dementia tend to always remember their loved ones. It’s not like Alzheimer’s.

Well, Burt knows I am important in his life.

He just doesn’t recognize that I am in his life; by that I mean he thinks that I am not present. When I say hi it’s me, Tamara he answers where is she bring her to me. He’s always delighted and delightfully eager to see me.

He knows I am important just doesn’t realize I am there by his side.

I know it’s hard to understand, but although I would welcome his recognition, I am more distressed that he feels so abandoned.

Wouldn’t it be nice for him to know I am always with him? That he is not alone!?

It does hurt when his aide says what’s your wife’s name, and he gleefully mispronounces wife#1’s name.

Oh, well. He usually calls out for me. Me, by name.

He doesn’t call

Burt always called me during my respite hours. At one time, while he still could, he’d place the calls himself, relying on the numbers from the phone book I had made him. Then he started getting his aide to place the call or to text me to call him.

It was intrusive. I picked up calls at lunch with friends and in the midst of support groups.

Recently, my dear friend noted, “This was the first time Burt didn’t call during lunch.”

And suddenly I missed him. I missed the calls that interrupted.

A month or so ago, I had sent his number direct to v.m. It was an inadvertent choice, and I figured out how to reverse it. If he had phoned, my cell would have vibrated with the sound of a light gallop.

I realized that mostly I no longer heard from him. Another phase. A new plateau. If I called him, he would probably say “okay thanks for calling” minutes in.

I miss him.

Memories

What makes you feel nostalgic?

A YouTube video of snow cascading outside a coffee shop with jazz pleasantly playing prompted «It’s a slow game, but it’s good« from Burt.

Lately, Burt will comment on a “movie” he feels he’s watching even with the TV off, so mention of the «game« didn’t throw me.

For me, that was a reminder, a jog to memories. Burt taught me baseball. That’s a slow game!

Baseball and the afternoons we spent at ballparks taught me to sit and wait. There would be excitement. A double play, a missed pop fly, a triple play… a perfect game.

Yes. Baseball is the perfect game. But you afficionados will join me in saying a perfect game is the pitcher’s triumph. We saw one of those; I believe it was Dave Cone who triumphed that day. After a long rain delay.

[My own delay just now was looking it up. July 1999. Yanks vs Montreal. My research also tells me this was only the 16th perfect game ever pitched.]

It’s New Year’s Eve, so I should wax nostalgic about all The Nutcracker ballets we attended.

And I do. Ditto the several times Burt got us tickets for a play on NYE. How we enjoyed those despite the difficult logistics of getting home on that of all nights.

I mentioned before that we saw Audra McDonald at Lincoln Center in a New Year’s Eve concert.

We were goers, Burt and I, but it was he who initiated all these outings.

I miss that. I wonder if deep in there somewhere, Burt does too.

Call and response

Burt has taken to pontificating all night long. Or, almost all night. Twice when I said «it’s 4 in the morning now, you can try to sleep,« he’s agreeably responded “that’s all right with me.” I always refer to him as “honey” at 4a.m.

He sleeps deep into the morning after that.

Unlike some of you, I am a sound sleeper.

I know about his conversations because I awaken to go to the bathroom every so often. When I do, he’s chatting. Sometimes, he’s yelling «Hello« or giving orders. I have learned to butt out for the most part.

He usually just enjoys talking, but sometimes, he gets agitated by the slow [or stupid] response of his interlocutor.

Getting back to sleep is becoming harder since the yelling grates on my nerves.

And the drumroll of chatter can also be annoying.

This is especially the case at 2a.m. for some reason.

Context is everything or would be if there were one.

It is sad that he’s compelled to talk himself hoarse. It’s sad that his discussions make no sense. It’s sad.

Serious

There is always one more worry. I know you’re shaking your head “just one?”

Despite the comical appearance, these are meant to protect the skin on the heels.

In fact, since he’s been bedbound, I have been put on red alert. The skin is susceptible to breaking down. Bed sores are a real and unpleasant danger.

As I write, I am thinking, I told y’all about this. Sure enough.

Honestly, it is distressing. I hope the prodigious amount of cream I massage and slather on him will ward off this worry.

By the way, a nurse told me that massaging the skin on and around stimulates circulation at the pressure sores. That’s good, Nurse M tells me.

Redundant

My takeaway from the discussion was that the brain protects itself by holding redundancies.

Well, that was one of the points I gleaned from Neil DeGrasse Tyson’s StarTalk with Daniel Levitan (and Chuck Knight) on music as our first language.

Why redundancy? It would be a way for the brain to keep and store information that we need to survive in more than one place. If some mishap takes it away from one place, we can access it from the backup unit. It’s kind of like relying on a generator to power our lights when the grid fails.

Redundancy in brain function may also explain the «long goodbye« of dementia. [This is my unscientific speculation on the science as it was presented.]

There’s another storeroom full of things that might be useful.

Some functions of the brain are preserved in duplicate for the sake of self-preservation. They might kick in as the losses, the difficulty in organizing thoughts or inability to find words, are plaguing our loves with p.w.d.

Usually, the confusion is so great that the information tucked away isn’t much help. It may even add to the muddle. It doesn’t seem to clarify anything for Burt.

At least there is still music to sometimes soothe, entertain, and calm him. Us, actually, I should say. To entertain and calm us.