this is our life

Day into night

Agitation and upset come into every life, but they are harder for your person with dementia.

Losing time is a frequent confusion. When Burt first presented with symptoms, the topsy-turvyness of his days was distressing to me. It confused him that it was 7 at night and not the morning, but he seemed OK with that.

Recently, he’s once again experienced this confusion. He was as sanguine about it this time.

In fact, when it occurred the other day after a nap, he just about accused me of gaslighting him. He said one of us was crazy. I reminded him about the hack the doorman taught him; Burt thought it was midnight, but our doorman pointed to the sunny day to prove it was noon.

Not enough. He wanted to know if I had read about people like him (the ones with Benny Blue) having trouble knowing the time.

I found a poem, I had written about time that I thought would not prove more distressing. [I have written many poems about the loss of time or memories and my feelings.]

I read A Life, In Sum to him, saying it was dedicated to him. He seemed to find it soothing.

He asked for more evidence that he was not alone with this affliction of time. I texted a friend who also cares for a beloved with dementia. She sent an anecdote to confirm.

Burt’s mood changed instantly for the better.

Ego

I use this bit of insider knowledge as a tagline in my online communications with other caregivers.

Caregiving turns out to be a Zen experience; little by little, we give over our ego to the care.

We have to forgo that inevitable clash of egos in which we as couples engage.

This is a positive by-product of his diagnosis. But lord, I miss being able to just argue with my husband.

The sublimation of the ego is also a necessary part of dealing with your pwd.

That’s what “don’t take it personally” teaches us. Burt can tell me I am the best and the worst practically without taking a breath. I don’t take offense, although I do take it seriously.

Everything he says to me is treated with respect.

My other word of wisdom is that: Without love, this journey would be impossible. But I acknowledge that “Patience and love don’t always naturally go hand in hand.”

Mellower

Me. Not he. I have become a less bristly me since Burt was diagnosed.

Oh, yes, I panicked at first. He was so listless. Now his moods (for examples etc. see I’m so emotional…) give him plenty of volatility to play with. There are lulls, and he can be calm and kind.

I was always tough- to -standoffish in my stance with the world. Now, I, too, am emotional. Grief-stricken at all the losses I witness in him. Grateful for help and support.

Touched by the care and concern of friends and acquaintances. Moved (often to a teary state) by his resilience and fortitude.

It’s a bumpy ride.

Up up down up

Burt had two days of the grumps following our outing to the Thanksgiving Dinner and Dance. I realized this was a smaller version of the reaction I had read about, the slide that follows a big event. It was mild if unpleasant.

On Wednesday, he told me what he liked about his aide was that she calms him down. His insights keep surprising me. It’s what I value about his aide, too.

In the evening we went out and I wrote a poem. It was short. It was about the moment we were sharing.

I read it to him. Skipping a beat, maybe, he got it!

Why didn’t I think of that

I had a “duh” moment tonight when I took Burt to a Thanksgiving party at our nearby neighborhood center.

I hesitated. I had trepidations.

He was nervous. His anxiety over where, when, why were extreme.

I was pretty sure I could safely ignore his exhortation to “get another boyfriend” if I wanted to go to something like this. I planned and I organized.

Time came to get going and we arrived to a sweet, terrific welcome.

The room was lively and set up with white chairs and round tables on the basketball court. The shot clock in the auditorium was a bright red. Burt was a convert. He wanted to go to any event that they held.

I had heard of partners who went on trips or who took their person with dementia out for visits. I was envious but felt Burt’s reluctance would make that difficult. Now I know I can do it and how much it can improve mood and sense of self.

Here’s the conclusion: Going to things together and having activities like this is going to make caregiving an easier journey.

Gratitude

It’s Thanksgiving, that Thursday in November we’ve designated as a day on which to be grateful.

I am. I still have my Burt.

His challenges come with heaps of love and appreciation. That’s to say he is grateful. He frequently thanks me for everything I do for him. He doesn’t forget to be appreciative of his aide as well.

The other night, he made a video in which he thanked his OT for her services.

I am grateful for all the gratitude he shows. Even when it feels like he’s gone overboard.

Since he has Lewy Body and not Alzheimer’s Dementia, he remembers unexpected moments. He has thanked some friends and neighbors over and over, repeatedly for favors large and small.

It’s an embarrassment of gratitude, and some of those he thanks are embarrassed.

I think it’s sweet.

“I’m so emotional, baby”

We all tend to be so overwhelmed by our own emotions. I should have realized this sooner, but it hit me just now.

A young woman was on her phone and she started tearing up when she said, “I feel like….”

That conclusion brings me to our LBD partners. They are in a constant raw emotional state.

I am sure it’s exhausting for them. I know it’s exhausting for us.

Truly, in the interest of avoiding “compassion” fatigue, I try to remember his p.o.v. whenever I can.

So, yes, it has to be very hard on my loved one to ride those waves of feeling.

Paying attention

Is it possible that we are watching too closely?

We see declines. We worry. We are concerned with their comfort. We look to manage this disease. We know we can’t prevent the inevitable, but we look to head it off at the pass.

Sometimes, when we pay so much attention, we give ourselves more worries. It’s LBD. There are going to be downs that might be temporary or ups that might not last.

My caution stems from the experience with Burt over the past few weeks. He has seemed so much more confused of late.

He imagines his mother, father, and sometimes a young “male,” helping me care for him. An old friend came to his birthday party, and he was so excited to “meet that guy from Brooklyn.”

At times, he seems almost completely incoherent.

All the while, he has also been aware of and bemoaning his brain disease.

On the day of his appointment to his neurologist, he was his normal jocular self. He liked seeing the people who come with to help me on these visits. Once in the doctor’s office, he perked up. He remembered. He was able to ask questions. He reached a highpoint.

I don’t know how to describe this, but it was not showtime. I know it sounds like showtime, but it was more like a transformation.

Today, the day after he saw his doctor, he still seems to have returned to a plateau. We had a friend drop by to wish him a belated happy birthday. Burt was sharp.

His focus continued when he made a short video about his OT experience for her last day with him. What he said was smart, funny, and very touching.

Just as I won’t despair at the decline when he’s confused, I won’t exult too much in the improvement.

No one knows what will be. Let’s not overanalyze. Be vigilant. Be caring. Be grateful for every day.

Memories

Burnout

It’s a topic of great interest to anyone who is caring for another human being.

Family caregivers have a dose of extra responsibility. There’s the physical caring, which seems like a lot.

It’s not all. We also make personal decisions about the healthcare of our loved ones. Financial decisions fall to us as, often, do the costs of care.

Burnout is on a long list of mustn’ts. It behooves us to stay positive; to stay healthy; to remain cheerful; and to continue with “self care.”

So we mustn’t harbor any negative thoughts or attitudes.

Mustn’t get ill.

Mustn’t take the smile off our face or out of our voice!

Mustn’t deny ourselves that moment of quiet or time for a manicure.

Of course, we expect the mustn’ts to add up so we won’t burn out.

Maybe we should just acknowledge that burnout and sadness are part of the experience.

This was my comment to my friend D.:

As for burnout, everyone advises self care. I say, “Yes, and with that, we still get burned out because this “labor of love” as you put is hard. It’s a lot, it’s work.” I think that reminding ourselves of love is a big component of self care.

And I think that congratulating ourselves on 😣 persevering can go a long way to mitigate the hard parts.
Myself

Acknowledging the challenges today brings can only help. For instance, today, it’s the physical needs of care that are hard for me.

Tomorrow, it might be the emotional or a complicated mixture of things. I will find a way to cope. And I will let love lead.