Forgotten?

Early in our journey when Burt was in many ways deepest in the throes of Lewy Body, he didn’t recognize me.

He’d ask me frequently who I was. I would answer with that neutrality that hides any disappointment.

From my answers, he assumed that he had several wives, all named Tamara.

From our care team, I learned that he suffered from his own unique brand of Capgras.

After his questioning of my identity, he would flirt with me.

Burt regaled me with an expansive retelling of his life story.

On one occasion, when he finished introducing himself, he asked me to tell him about myself. I told him the story of how we’d met.

Burt said, “you seem like a very nice lady, but I don’t remember you.” I feel the wrench of his words.

It was the first time he had voiced not knowing me, even if his asking me so often who I was tacitly said as much.

It might have been the simplicity of his confession (I’m sorry, but I don’t remember you) that struck me so hard.

Let me warn you that your loved one’s dementia might result in this type of erasure. And it will hurt.

Down from the mountain

Is that what caregiving feels like? Racing down, unsure of the brakes, one second-guess away from taking a wrong turn.

It certainly might. Caregiving can take your breath away as if the journey is an adventure. It can also have you holding your breath.

It’s a profound and transformative experience.

Forever

What’s a moment you wish you could freeze and live in forever?

Sunday, May 3rd marked the 36th year since we met. The moments we spent together on that day are frozen in my memory.

On that evening, we had wandered the city from West 21st Street to a restaurant at 50th and 1st Avenue. As we finished eating, Burt said “I really like you.” I remember how I felt when he was so definite in his statement. There was no modifier, no I think about it.

We walked uptown to 72nd Street from the restaurant, deliberately, at that getting to know you pace.

In so many ways, I have frozen these moments, and really many others from our life together. It’s a gift.

Dr. Google

He’s probably famously the most frequently addressed “medical” consultant. There are lots of caveat emptors that go with his cred.

Dr. Google doesn’t know your family history. Doesn’t even know you. May not be familiar with all the possible causes that led to your current plight.

All that is to say, I am not referring you to Dr. Google’s care. Yet, I am suggesting that YouTube has many very knowledgeable people to help you through a dementia diagnosis.

From Teepa Snow, (my dementia guru), to dementiacareblazers.com, I found lots of resources online. The Mayo Clinic, Cleveland Clinic, are  reputable sources for information. Information about LBD here from another credible source as well.

There are videos which can guide you through some of the tasks of caring, too.

In short, the internet can be helpful. As with all resources, I ask that you consider the source.

Symptoms?

It’s sometimes referred to as LBD, sometimes DLB, depending on the genesis of the disease.

It can progress in differing ways. It can begin as Parkinson’s. It may not and some patients only show the symptoms of tremors and shuffling later. Burt had very little of this.

He had hallucinations, severe but not scary, in the early part of the journey. When I claim “early part,” I mean after I became aware that something had gone awry. He dove right in, as I have often described it. He had Capgras Syndrome before or around the time of diagnosis. I remember I was able to talk to his NP from Mt. Sinai about it.

Having information, names- labels- for what is going on is comforting. I was grateful. You never fully know what to expect. Having a knowing ear to hear you through is, well, a bit like a life raft or a tonic.

There is nothing usual or normal about how Dementia with Lewy Bodies, or Lewy Body Disease, or Parkinson’s Dementia manifest.

Be prepared for anything but stay in the moment.

That is advice I will share with anyone dealing with any dementia, not just the above named.

It’s true LBD is described as having Parkinsonisms. To be clear, just as Burt showed very few signs of Parkinson’s, so too Parkinson’s does not have to lead to Parkinson’s Dementia.

P.S.

Here’s an insiders’ look at what it feels like in a YouTube clip called F**k Parkinson’s from Michael J. Fox and Harrison Ford I just found:

It is what it is

Write about a time when you didn’t take action but wish you had. What would you do differently?

Do you dislike that tagline, the one in my header, as much as I do?

My dislike for it is tinged with the understanding that it’s kind of, sort of accurate. Regrets are useless.

And they inflict [unnecessary] pain.

Not taking action can be a problem. Some of us overthink everything that needs doing. While thinking it over, are we favoring inaction over decisiveness? Could be. Is this an especially big problem when you’re in charge of the care of another? Could be.

My policy in connection with this look back is whatever you did it was for the best.

And the best you could. I repeated that mantra to myself many a time. I did my best.

Contrary to Burt’s occasional, and I hate contradicting any of his bon mots, complaint, your best is good enough.

Give yourself the grace of good, even best, intentions.

Loneliness

Loneliness is not just about being alone. I am lonely, not because I lack for company and friends, but because I miss Burt’s company.

I love my friends. I am grateful to have them with me. I am fortunate to have them in my life. I enjoy our conversations, our outings, the time we share.

On the premise that two things can be true, I am both happy with my friends’ companionship, and sad because I miss Burt.

Had Burt and I not met would I feel lonely today? Not in the same way, I think.

There wouldn’t be any missing in it. I’m grateful, need I say, that we did meet.

On the premise that more than one can be true I am both happy that we had that life together and sad, in that melancholy vein. Grateful, yet having the memories of our years deepens the loneliness.

Design a site like this with WordPress.com
Get started