this is our life

Recognition

When we started our ride with Lewy, I was cheered± by one assurance. Unlike Alzheimer’s the person with this dementia will always know his/her spouse.

It’s a tricky point. They didn’t tell me that he would tell me that his wife was dead; or that he hates her. They didn’t say that there would be so many of me.

Well, actually, they did. I was introduced to Capgras (the “phantom” wife syndrome) early on. Burt never recognized me then, but he had many wives.

I guess what they didn’t tell me was how complicated all this was going to get.

Juggling multiple wives isn’t that hard for Burt. I am the one who is challenged by it.

Not just logistically. As time has passed on this roller coaster ride from hell, I have found the issue of my identity ever more difficult, emotionally. On the gut level.

Speaking of work

Burt was looking for a job. I know I mentioned that a few times. It’s hard to dissuade him, and this delusion that he needs to work is persistent.

The other night, he was intent and preoccupied with some sort of project. He’s always managing and directing others at his job.

Work kept him up late and also recurred over the course of the night.

I can sleep through anything. He was barking orders a lot.

I was able to recuse myself from the command to “do this now” by a claim that I had organized everything in boxes. (Well, I had.)

Thus, while he continued to boss the imagined staff, I could sleep.

He caught up by sleeping the next day and miraculously also slept that night. Well, his sleeping and tired-weakness are not so much a miracle as a worry.

It’s clear that he is in a decline. Added confusion, more intense delusions, and hallucinations along with his weakness moving are all part of that downturn.

So, yes, the work project is funny, but there’s this sadness too.

Since this is Lewy, I always expect a change; maybe there’ll be a climb upward. Not knowing what to expect is just part of the ride.

Figuring it out

Okay, this is a bit weird.

One of my fears is that by the time I get the hang of caring for Burt, it will be too late.

It’s a huge learning curve, at least for me.

So many things to consider and do. I want him comfortable, safe, and secure. I want to love him the best I can.

His emotional well-being is a component of my big pictire view, too.

He has anxieties, often telling us, “I’m scared.” The only answer to that vague announcement is to say don’t be. “You’re ok,” I add, knowing he’s not.

Cuddle and coddle, hug, and reassure seems to be the formula.

For now.

Daydreaming

Burt always was a daydreaming kind of guy.

I’ve been saying he wasn’t an imaginative guy, but clearly, he always was.

In those days it was clear to him that he’d been imagining he was managing the Mets. It was cute that he insisted they also hire me.

He knew fantasy from reality. Now, he thinks his dreams are real.

Caring. Day in/day out.

My role as caregiver is certainly not an easy job. I am not saying this out of self-congratulations or pity. I try not to allow it to limit or overwhelm me.

In order to, you know, keep on keeping on, I have to stay strong and centered. Burt has often told me not to get sick, as if it were a choice.

The choice for me, as our journey becomes more constrictive, is my staying engaged in the wider world.

I also choose to be kind as I care. The grind of it requires a focus on compassion, and that focus can grind you down, too.

When I veer from that path, I reset my course as quickly as I can.

Sometimes, that just means walking out of the room before impatience or anger boils over. My mother would’ve advised I count to ten.

The prophylaxis to exhaustion and compassion fatigue lies in finding yourself. You are now out of necessity [and willingly] a caregiver. It is not all you are. Those things you were are still you.

A wife, a friend, a writer, a force for good, a force to be reckoned with, a woman. These are my pronouns, and yours, as a caregiver, might be a husband, a brother, a father, a friend, a son, a scientist, a pharmacist, a man.

Find all that in you which is in you and then find some more. And get out to do things, too. Find some joy. Choose well. Breathe. Live.

Foodie

Sometimes, something just predisposes us to enjoy a food.

Cooking has been pretty much out of my vocabulary for quite a while.

My favorite “meals” lately have involved some measure of yogurt, usually with nuts, fruit, and granola.

(No hot food, so maybe that was what predisposed me.)

I mix a breakfast cereal mush for Burt that is designed to offer fiber and protein. It is also caloric. It tastes sweet and fortifying. It is also delicious; I mean to say this objectively, as even he likes it.

Getting him to eat has been a challenge, not constantly as it once was. Pureeing seems to be making the difference.

Tonight, I pureed red skin potato in milk with several pats of (real) butter. Then I added cooked baby carrots and hit the button some more.

The result was a silky soupy pale orange ersatz Velouté. The flavor, texture, and “mouthfeel” felt so sensuous. I was reminded of our weekly lunches at JeanGeorges back in our day.

I am bragging, but this dish was perfect for today. I also had a yen for sunny eggs; I dipped them with a fresh slice of whole wheat bread.

Why I am up at 4

My circadian clock is resetting. I hit the sack at or before 8 or 9pm.

It’s a full seven to eight hours by the time the clock ticks to 4am.

Why so early to bed? you ask. Exactly. I lie down to help settle Burt, who after a nap from 6pm is suddenly on a talking jag. He might be anxious to “go home,” an anxiety undeterred by cheery outbursts from me. “Oh, aren’t we lucky! We are home.”

There might be a train to catch, likely and apparently the last for hours.

There could be some concern over his “job.” He has an urgent need to organize whatever has to be done.

What’s my excuse at the shank of the night and the [oh so early] start of the day? I am up with the cows to close the window as it might be getting chilly. I am awake organizing whatever needs to be done.

I have some anxiety over what will be despite so often seeing that what will be turns out differently than expected. It is almost other than I feared, “aren’t we lucky!” usually sooo much better.

Some thoughts and ideas might percolate to distract me, but they require writing down. And I’m up.

Transition

It’s in my journal. “Burt has so much trouble with transitions.”*

Then it hits me, Burt’s transitions drive me nuts. It takes so long for him to get up out of his chair. I timed it one day, and it took 45 minutes. That was with two of us assisting him.

I just get so antsy that I add to the difficulty.

On good days, I leave him to the aide. That way, my impatience doesn’t add a distraction.

Today, he couldn’t (I would say wouldn’t, but he no longer really has that kind of will) get off the bed.

I left him with his weekend guy and went to have a cappucino. [Nice new place on the corner of 77th and York, by the way.] I left because his inert position, sitting near the edge of his bed, was wearing on my nerves.

Of course, I know he can’t help it. I shake my head, saying Poor Burt under my breath. I’m just emotionally drained by this. It’s not rational. It feels unkind.

I need to walk away.

Today, I was handed a few other opportunities to be tested. After my break, I came back to help him to the bathroom.

He again could not move off the toilet but really wanted the pistachio ice cream I promised.

I went to pick that up and came back to help pick him up to go from the bathroom to the bed.

Each little transition of mine – going out for coffee and to the ice cream parlor – fortified me for the transitions with which Burt was struggling.

*Transitions were always difficult for Burt. They were integral to his anxiety disorder years and years before his LBD diagnosis.

Rest

There is considerable chaos 
Among the Chux on his bed.
He moans, complaining as he
Sleeps. If the dreams are hard
I will hear their wild stories in
The morning as he awakes to
Share the narratives of his
Imaginings and the pains his
Moans express. Yet his sleep
Is fulsome, generous, relaxed

A good week. I’m still stressed. But it was good.

Here I am. I am affirming my positives despite the stress of last week. Let me count the ways:

Burt’s surprise birthday party was a little too much for him, but he survived it w unusual stoicism.
AND had a couple of nice
encounters with Mel and with W in particular.
He also remembered MR as the guy from Brooklyn.
I really enjoyed seeing all the people.
His weekday aide coming was special for me, and Burt noted her presence. She also helped out.
L’s late drop in was touching.
The 2 Ds also made a late pop in on the way to a movie; they are such upbeat people
Very pleasant celebration so a🌷up to the party.
On Sunday, we ran into J at Sedutto’s. That was fun for Burt, too. She wished him a happy again and talked a little Brooklyn with him.
Then, on Tuesday my being able to GET OUT to the 6th annual and be part of the Caregiver Appreciation Event plus the writing group meeting & reading at AlzHQ was also a great and a special respite for me.
Extra points for being able to deliver the sample for testing to the doctor’s office.
Burt, being in his big brown chair when I came home from the Event to greet me, was ⚘️ a bonus for me.
Thursday’s OT went well for Burt, which seemed very important after his recent weakness.
Friday, he was again up and in his chair when I came home. No more fever this week after I shut the heat in the bedroom.
My Friday art (connections) group really connected; it was extraordinary for the sharing as well as the art.
A Thursday morning virtual “museum tour” proved very peaceful, as did that day’s deep water aerobics.
Positives, affirmed❗️

[I had a little extra stress from the unexpectedly threatening phone call that I got on Friday. You know that feeling when you shake everything off and then have a nightmare.]

Today, the hospital bed arrived and was assembled with none of the drama I anticipated. One more plus for us.