this is our life

There’s a lot to be said

From pretty much day one of Burt’s symptoms, I looked to getting help. Initially, it was because I needed my time.

I wanted to get 3 or 4 hours several times a week to get out. It seemed an existential need for me.

In the parlance of our dementia communities, it’s deemed “self-care.”

Some of us frequently express our annoyance at the exhortation to “take care of” ourselves. We also recognize the necessity.

I realized I had to go on with some small portion of my regular life in order to get on with our new life.

My time was for chores (like trips to the pharmacy) and for enjoyments (like time with my friends for lunch or coffee or walking around solo taking pictures).

It was to keep up the habit of exercise or to keep appointments (for my health or our financial oversight).

Over the last several months, I saw gaps in my plan.

I needed not just that essential me time, but also more assistance with Burt.

Our battles over food, for instance, could use another hand.

His caregiver would be able to help defray the fraught in this aspect of our relationship.

Another hand to feed him seemed like a simple idea. It took me a while to mull over, but I decided to implement time for both of us to get Burt eating.

An added hour at home with the caregiver here so we work as a team has been very helpful.

Burt’s recent decline both physically and in terms of erratic behaviors has made taking him outside on weekends an iffy proposition.

One Saturday, despite his eagerness to go out, Burt became agitated once we were on our way. He started banging his walker into a low wall near the door of our building. Until he toppled over.

The fall was not devastating. He was unhurt. Neighbors by the numbers came to our aid. They pulled him onto the seat of his walker; one escorted us all the way into our apartment.

This is the moment for gratitude, so I pause.

The devastating effect was on my confidence in dealing with Burt on my own.

Time for weekend help. Burt’s regular aide took a week off, and the sub is now our weekend guy.

Day one was yesterday. The goal was to deal with a steady pattern of meals for Burt and to get some outdoor activity in our schedule.

I am exhausted from all the doing, but this is the right thing for us. We are looking forward to our Sunday. Burt is talking about breakfast and lunch. I am saying we’ll go out to sit to watch the river.

On our outing today, Burt kept threatening to fall and was pretty convincing. The last leg of our trip was actually very nerve-wracking, and we pulled him seated on the walker to the door. His new aide helped keep him from falling when he finally got up by the door. Even Burt acknowledged that he’d helped. We put Burt in the bedroom so he could rest.

Burt suggested I “get rid of the guy,” but when he was in the other room, he asked for him.

All in all, a great first start.

Good news

For some good news

I have mentioned Burt’s enjoying people as a highlight of his disease. He has grown more outgoing over most of the course of his dementia.

During the first phase of his recent dip, he stopped engaging as he had. Part of this is because he doesn’t recognize the neighbors as he used.

Lately, he’s back to wanting more connection. On our trip to the doctor, he spoke to passersby and had a long chat with the fellow who always helps transport us to appointments.

One of our recent outings was a Teatime for Caregivers that we went to. He flirted with our social worker and loved the lemon squares. We both had a good time.

My good time was enhanced by seeing glimmers of Burt in good form.

Showtime

It’s a great phrase and describes pretty well what it’s like when our loved ones rise to an occasion. They will interact with old friends as they might have before their disease came into our lives.

I am not sure it’s really play acting as the term implies, however.

I think it is a way for our loves to meet an old self. Somewhere in there is the person he was before the dementia. He [or she] has an awareness of that persona; social settings offer an opportunity to bring back some of who she [or he] was.

You’ve set the stage for that persona to come forward and shine. It’s a huge effort. It exhausts most of our beloved ones so much that they need a few days for a recovery.

My theory is just a poetical stab at describing the magic of showtime, especially for anyone who is seeing it for the first time. No science.

The battle continues

Here are some of the things Burt’s lost along the road our journey has taken:

The construct of time. It is a made-up thing. He was right about that early on. He would say, “Why is it day or night?” Well, not so much right on that point.

Time is a man-imposed measure, but nature brings the light of day or the dark of night.

The hours and the minutes just help us keep track so we know when our wife is coming home or if it’s time for our favorite TV show. Yes, he’s kind of demanding “on demand” all the time. Why didn’t I think of that!

The inability to keep track of time has serious consequences. It messed with his sleep cycle in the beginning of our travels with this disease. I think it also added [and still adds] to his anxiety.

There’s another battle Burt has lost; he suffered from anxiety and was prone to panic attacks before his illness. The presence of Lewy Body Dementia has heightened those health issues.

No doubt living with confusion has to increase feelings of anxiety.

Often, the confusion veers off into an uncertainty about who he’s talking to. Hence, the “What’s your name, little girl?” queries.

The presumed encounter with a stranger is most usually a benign one for him.

Impulse control, never a strength, is gone. He’s quick to lose it but also quick to subside after (for instance) tossing a therapy ball across the room.

To recap, from the top, the losses are any sense of time; mental peace and comfort from fears; security and certainty; freedom from tantrums.

Of course, there are the also poignant diminishments of logic, understanding and judgment. The complete inability to determine cause and effect.

As he was prone to explain, “it’s a brain disease.” I have to be thankful that as the disease has progressed, he seems to have lost the knowledge of its most devastating effect.

It’s more than just the symptoms

In the beginning, I only saw the symptoms.

I protected us from the damaging effects of his impulsiveness, poor judgment, and diminished cognition.

When he was aggressive, I did what I could so he didn’t hurt himself, me, or others.

I met his agitation with the “I’m sorries” I had learned from counselors easing me on this journey; he wasn’t buying that and saw through it for the pablum I had made of it.

It took me much longer to feel the losses he felt. Empathy was lagging as my judgment reeled from the shock of unusual and odd behaviors.

Compassion began to kick in as I saw what he was losing.

He’s lost everything, all control over his life, his money, his daily activities, his emotions. As Lewy has progressed and he’s declined, he’s lost touch with his losses.

He can’t fully trust who he is. Much of his resume of major life events is altered by his memory.

He’s not sure who I am. Sometimes, he is unsure which wife I am. Sometimes, he’s sure he’s speaking with the new one or the nice one. He is surrounded by imaginary friends and dead family.

He’s quick to anger. He suffers little disappointments with the impatient tantrums of a child.

The moods shift out of his control, sometimes spreading sunshine. He soaks up attention and affection.

His dementia is more than just the symptoms. It’s not the mishearing; the misunderstanding cause and effect; the slipping in and out of time; the tall tales, and sometimes violent ideation; the repeated questions and non-stop talking. It’s more than the extreme anxiety and neediness.

It’s more, and it’s so much less. It’s so much sadness and loss.

The good news in the grip of all this is that he is still resilient. We have many more miles to go on this journey. His strength will help see me through.

At the start

When Burt first presented with his array of bizarre and unexpected symptoms, I simultaneously felt [that] “I couldn’t” and “I got this.”

My current state of mind is very similarly disposed to having it both ways.

Often, it looks like he’s also on the same page. “Got it” and “I just can’t.”

After a recent bout with a drop in his blood pressure that literally brought him to his knees, “I can’t” looked like it would triumph.

For me, despair at our situation was foremost and, of necessity, well-hidden.

Burt was in a wheelchair rather than on his trusty walker. His aide worried he would wobble and fall. I had him stay in bed on Sunday after being unsure I could keep him from toppling on Saturday.

It looked like grim times for us. Burt tried hard getting himself up and into bed one evening; his exercises with his OT were limited.

Next day, I came home to find him in his big brown chair. His walker had replaced the wheelchair. It was just the 6th day since his tumble.

He worked hard to get up and out of his recliner. After 4 practice runs at it, he was holding onto the handles of his walker and heading into his bedroom.

Even in his confusion, he’s a serious and determined guy. I’m impressed. And hopeful.

What’s changed

Our lives have been turned topsy turvy by Burt’s dementia. Lewy Body has no timeline, but it does twist time.

Obviously, Burt has been changed by his illness. Not so obviously, so have I

The question: How has my pwd’s dementia changed me? has a long answer.

I so want to say I am a better person for Burt’s situation. Am I?

I have learned a great deal of medical terminology and some symptoms. I am open to learning, but I always was. Open, that is. Although not really to all the medical stuff that informs our relationship now.

I am also open to being a better person, of course. Who after all isn’t?
I am less resentful. That’s odd.

Definitely less snarky.

I am more open to learning about Burt; there are a lot of his qualities to explore. I hadn’t known so much about who he was, had overlooked the best of him.

He was always smart, and in the framework of his diminished cognition, the smartness shines through differently.

I always loved him, but it was less intense. It wasn’t as necessary.

I am more capable than I thought I could be. God, how I wish I weren’t and wish I did not have to be.

Defiance

Burt is pretty much in his own world. As long as the hallucinations aren’t scary, I am told there’s no need for me to fret. Or medicate.

We shall see. The multiple mes disturb and unnerve me.

Other aspects are amusing. Burt tried to send me on an errand the other night. When I said, “I can’t leave you alone,” he responded he’d be fine with all these people here.

His behaviors are far from perfect.

I have described him as a thrower because he tosses plates or spoons or food. One day, my soundtrack for this activity was a predictable “now pitching for the NY Mets.”

These glimmers of the bad boy Burt are welcome through this morass of confusion. His defiance can be funny, and when he jumps in to join the laughter, it’s a treat.

Getting him to eat is a struggle. When he was unwilling to take the food we offered, I volunteered, “eating involves chewing and swallowing.”

As I stood over him saying, “Now swallow,” he removed the little ball of food from his mouth. He threw it underhand some 2 feet away. With that, Burt announced, “My hand slipped.” His laughter was infectious and delightful.