this is our life

Grateful, appreciative, and thankful

It’s Thanksgiving.

Talk of gratitude is as prevalent as the turkey on our plates. We are parsing what is worthy of our appreciation as we sit down for today’s feast.

The original idea of this holiday was to show thanks to God for the bounty in our lives. Gratitude practice is at the least a spiritual one.

It’s hard to be thankful if we don’t see a benevolent universe.

Sometimes, it’s hard to say thanks even when we see good around us.

We are often put into a grateful mode after a life‐threatening event. We look back, and we are thankful to be alive.

Gratitude comes to us after our lives are changed by other difficulties.

Burt’s diagnosis, and his ongoing illness, have given me the pause that sparks gratitude.

My gratitude at still having him here with me is tinged with sadness but also with memories of the happy life we shared.

I am grateful for the memories and for the good times we had.

Burt has often shown his deep appreciation over the course of his disease.

At times, he gives us grief and resistance before thanking us for something we did.

He can take pleasure at many little things and is quick to give a thanks for them.

His pleasure gives me joy. I am grateful for that.

Mayhem

Burt asked me if I knew that guy. I listened a little harder, had he said Maynard?

The guy, he repeated, «Mayhem«. His question gave me chills. I thought of the character Dean Winters plays in a TV ad, but I also thought of the mayhem LBD causes, the disruption in our lives and in his brain.

This day had been one on which he was particularly confused. Did Burt ever use that word before, I mean ever?

It’s never too late

The jingle about Jello Instant Pudding® is running through my head right now, but honestly this is a serious post about a serious question.

The other night, Burt, in the midst of his confusion, was lamenting how “sick” he feels.

My response was to tell him that whatever was bothering him, hurting him and upsetting him, we were in it together.

I repeated this little mantra many times.

I have often said that Burt’s LBD is a disease built for two. Any one with a spouse with dementia is in that very situation. We do go on with our lives while caregiving, but our lives are informed by our beloved’s dementia.

I felt like I had not said it often enough when he was a bit more cogent. We are in this together.

You should also know that the evening’s complaint included a “you did this to me” blame as in it’s you who are making me sick.

I would classify this accusation as part of his confusion; a little bit of the monument of distrust he’s built around our relationship.

Add to that the fact that he thinks his wife is never here no matter how much I insist I am. Right here. I am holding your hand, I will say, and he says go get her, bring her here.

The question: is it too late? Are my reassurances for him? Are they just for me? Did I miss the lifeboat, the moment we could fully share his distress?

Do I continue to reassure him? Me? Us?

We are in this together. We are!

Rapid

My sense is that Burt started his path in LBD at an advanced stage. From the get-go he went from a period of apathy to being fully confused in what felt like 60 seconds.

Capgras was one major symptom; little people enhabited our home; he needed reassurance that he was home.

Meds helped a lot for about three years after diagnosis. A lot. He chased away his hallucinations; generally recognized me; I didn’t have to walk him through the corridors back to our front door to prove we were at home.

As he’s moved further into Lewy, paranoia and distrust have crept into our relationship. He tells everyone he hates his wife, which leaves me wondering who I am. This is especially true when he thanks me for “being so nice” to him.

As I often say, many of these things confuse me more than they confuse him. That is not to imply that he is not confused.

Right now, I am taking this as a hard hit. My heart doesn’t want to accept the reality of this ugly degenerative disease.

I’m working towards acceptance. Damn!

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.