this is our life

It’s not imminent

We all die alone; it’s our own
Personal drama. Noone should
Take our spotlight. I will stay
As witness. I will not let him go
Alone. I will be the chorus to his
Agamennon, the Fool to his Lear

Burt’s decline, as I have mulled it over and over, is a dark time for me.

It is also dark for him. He speaks of dying. He is anxious, paranoid, and sleeping.

One night, he was up with the full moon, talking and talking.

The next, he slept on through the day and into the night as a big moon still shone through our window.

That day and night waking was intermittent as sleep had been the night before.

Death will come, I hope quietly, I hope peacefully, I hope with the light of the moon.

I will be there, in his shadow, to hold his hand, as witness.

It’s not imminent. I don’t know why I feel I have to prepare, to brace myself for its inevitability.

In the meantime, I just want to keep him safe, comfortable, and happy. These last couple of days, he seems to have accomplished the happiness card.

That’s wonderful to witness.

I am enjoying his pleasure. It’s delightful.

Lunacy

One of my fellow LBD spouses has been pushing the idea that a full moon influences behavior in our loved ones.

I was skeptical. I tend to be.

Serves me right that on Saturday with a full moon looming outside my window, Burt was awake and conversing until 2:30 in the morning.

Full moon. Strange behavior. Makes sense.

Let’s look at what being confused is really like. I think we often feel that it’s a pleasant state or, if not quite pleasant, a not-unpleasant one. You look around, and things don’t make sense, but you know, who cares: It’s all good.

In this assessment, confusion is confused with the “no worties” state of mind.

Those whom dementia confuses aren’t enjoying some form of just being out of it.

It’s not an exotic trip on a magic mushroom.

It’s decidely not fun and games. It isn’t a voluntary experiment.

Confusion is not knowing where you are, who is with you, or even sometimes who you are.

The confused are disoriented and frightened. Anxiety is a constant companion.

Mid-conversation about getting something to eat, Burt says, “Now you’re scaring me.” I don’t think he’s enjoying his confusion.

Unambiguously

I started mourning…. I was going to say right away, well, that’s not true. The first losses kicked me in the gut. They perplexed me. I was angry. I was scared. I didn’t know what to do.

I started mourning as I got used to the loss. Losses, that’s the right word; they are incremental; each loss a little deeper, a little more refined. Stealing a little more of him from us, from him and me.

As I began to get my footing; to understand what was required of me. That’s when the mourning really began.

That’s when I knew my loss and felt his, too.

In the beginning, I was just so caught up in the ‘to do,’ and the ‘how to,’ the practical that made Burt’s diagnosis my own.

In the beginning, I had to learn how to take care of myself and him.

They refer to anticipatory loss, but it really isn’t. It happens in real time and every day as this disease progresses. They call it ambiguous grief, but there is little ambiguity in it. It happens in real time, and it’s with us every day, too.

I started mourning after the beginning.

Moment to moment

Burt’s fever broke overnight, almost as suddenly as it started. He was immediately a bit less disoriented. He was able to speak more clearly.

We were just chatting, and he mentioned his ex-wife‘s name. I was prepared for this. I was prepared for it to hurt when I asked who she was. He did say, ‘My wife.’

Conversation went on from there, and he accused Yakkafakka of hurting his leg. I named names, was he talking about his OT, or perhaps his aide? Or was it Tamara.

“Tamara?,” he said,”I love her.” He explained she was his wife and he never saw her. At this point, I volunteered that I was Tamara and that I loved him very much.

“Where is she? Bring her to me.” I persisted, saying it’s me holding your hand; I’m holding the spoon, feeding you; it’s Tamara, I’m right here. Finally, recognition and a pleased look!

I relive that moment in my mind over and over.

That was a great moment.

Music

It’s medicinal.

It can jog memories; it makes you feel good; it works on the mind.

You know how music can bring a smile to your face.

You know how music can make your love-with-dementia happy.

There is scientific evidence for this. Neuro scientific evidence.

The podcast here also tells us that there is redundancy in the brain. If one part of the brain fails, your musical memory is still in there somewhere.

A weekend routine

We were going out on Saturdays and Sundays.

We went to Karl Schurz Park or to watch the waters along the East River Esplanade.

We stopped at an ice cream parlor on our route to or from. When the park outings proved too much, we still went out for an ice cream.

We went out. And then we didn’t.

Burt seems afraid to stand up. It’s a job getting him up so we can change him and the bed.

My new routine is feeding him, then going to a cafe for a drink or a bakery snack. I try to catch up with a friend on this coffee break.

It’s the reality since his recent decline.

We went out, and then we didn’t.

As I told my friend A, I aim for a level of acceptance so that every sad thing isn’t such a shock.

Tomorrow, I’ll bring home some of his favorite ice cream. I think he still appreciates when I’m thinking of him.

It’s a chore. It’s a delight.

The sound of the glug glug as the bottle empties makes me smile.

Feeding Burt is a task. My wait time patience between spoonfuls is limited. I have to resort to a slow, silent count and to posture breaks.

Feeding Burt is also the one remaining intimacy we share. That and giving him to drink both foster a closeness. They are my service to him, and I am pleased to serve.

I still question my effectiveness. Is he getting enough?

Am I assuring that he eats a diversified diet?

Should I wake him to feed him?

Here’s where the focus shifts

Burt is having more interactions with hallucinatory visitors these days. He experiences delusions and a good deal of confusion.

This lessens his involvement and connection with those of us with him; the ones actually in the room.

For instance, when I told him I was his wife and I was home with him, he said, “Get her for me.” He meant on the phone, I believe.

He will call for his aide to help him when I am there, and for me, all the time I am out.

His conversation occurs in his sleep, and when he’s awake with equal intensity. It can be very elaborate.

Much of it is forcefully expressed but unintelligible.

I am writing my grief. I keep my sense of humor and a clear eye on reality as I do so. There is a part of me that expects Burt to snap out of it.

Aside: don’t picture Cher slapping Nicolas Cage. Although, as soon as that phrase came to me, I saw that scene in Moonstruck.

Burt is still in his decline. He’s not at the twist or turn when he was so unresponsive that he scared his aide.

He seems to want to stay in bed. He is fearful when we get him up; afraid of falling, a bit unsteady, unwilling to straighten his knees to stand.

Feeding him as I do now spoonful by spoonful feels like a tender act. I am physically present.

It’s my connection with him. It’s our interaction.

Aides in short supply

I had considered that any crackdown on immigrants would affect the food supply – from farm workers to deliverymen – but was surprised by this:

Some of the earliest and lasting effects from President-elect Trump’s promised immigration crackdowns would be in home health and long-term care, both of which rely on a substantial number of foreign-born and undocumented workers.

Axios Vitals December 4

Paid caregivers often come from the immigrant population. Labor in the health care industry is already in short supply and stretched thin.

What they’re saying: “Immigration policy is long-term care policy,” said David Grabowski, a Harvard Medical School professor who’s chronicled how foreign-born workers filled key nursing home roles early in the pandemic.

Axios Vitals December 4

In New York and California, the estimate is that 40% of health care workers are foreign born; only about 6٪ are undocumented, but let’s face it, there’s a shortage of this kind of help.