this is our life

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.

A surprise party

What was I thinking? Honestly, I had trepidations. This could go either way. Or in any direction.

A party could be too much for him. It could be confusing to meet so many people. It could be overwhelming or an unwelcome surprise.

My Burt is a very social guy. He’s made lots of friends in our building. He is sometimes direct and confrontational, but he loves to engage and interact with people.

For his 84th birthday, I wanted to combine my plan to offer him activities and company with a celebration of his special day.

We started slow with a ‘pop-in’ visit from a dear friend of mine. She came bearing flowers for him. He was charmed.

It wasn’t a party yet. Our doorman and friend came up with a card and a greeting. They chatted.

After an interval and when he was expecting his speech therapist, an old friend came in. She had been our neighbor in the “old apartment,” and he remembered.

Then, people began to show up in earnest. I couldn’t tell, even after M. sang the birthday song if he knew it was his party.

Apparently, he did. When the crowd cleared, he thanked me for making his life exciting.

His whole-hearted appreciation was wonderful. His joy at the attention was great, too.

Although I thought he seemed a bit confused during the event, he was a tad sharper after it.

I guess that’s what I was thinking!

In the shirt that our friend S brought him

Feels like a job

It’s a new revelation at my end of the caring experience.

I started thinking of my often funny, sometimes difficult honey of a man as a job. I hate myself for that, but there it is. He is work.

Many of us thrust into this kind of role feel unqualified. I am ill-suited to be nursing my spouse. At this point in our journey, he does not yet need a nurse. Yet there are many demands I am required to fulfill.

I don’t want to turn this into a pity party. Before we say poor Tamara, I have to say that much as I miss my healthy Burt, I still enjoy and love the one I’m living with now.

Partners

The loss of a partner is a difficult loss. When your love has dementia the loss is kind of on-going.

He can’t provide the support he once did. He can’t be the partner he wants to be. Burt is constantly saying “if you have a problem, come to me.” He is sincere, but he can’t be of any real help.

He wants to be chivalrous. “If anyone gives you any trouble, I’ll take care of it. I’ll tell them off, in a nice way,” he says. This display of chivalry is just one clue as to how little he can do. It’s sweet. And comical. And sad.

Today I am mourning this loss in the strangest context.

It’s time to set back our clocks. This would be a joint project spearheaded by him. I am stressing over the loss of an hour (or is it a gain?) (Or does it not matter)?

Time is something that has slipped by him so I am very time-sensitive.

He has trouble telling time on his beautiful watch. Time has little sense in his world these days. He wonders why we can’t watch an 8pm TV show at 9. To him there is no illogic in this question.

Day and night were a bigger jumble earlier in his disease. That confusion led to sleepless nights. We have so much of it straightened out now. And yet, the loss is so present.

Setting back the clocks tonight, there’s a timely reminder.

One day at a time

This cliche of better living is a caveat not just for members of the 12-step community but for anyone wishing to enjoy a more balanced life. Ironically, it is in the throes of my husband’s difficult diagnosis that I found a way towards “living in the moment.”

At first, I was thrown by every change and new development. “Oh no, is this what our life will now be!” I came to realize soon enough that change is the Lewy signature.

Today, my love might be restless and disagreeable. By noon, all that might change. Sometimes, the change will be an improvement, and sometimes not. Things won’t stay the same for long.

Dealing with and anticipating that things will be different is my way of living in our moment. I take Burt’s moods, needs, and expectations minute by minute. One day at a time gets broken up into the little fractions of 24 hours.

Often, this is surprisingly pleasant, if a tad stressful.

Planning, while necessary, doesn’t allow me to fully understand what’s next. I am immersed in our present.

Every day is a new day.