this is our life

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.

One spring day with Burt

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.

Support. Volunteer.

The idea that I might want to stick around with dementia caregivers after the traumas of my journey with Burt seemed unlikely. I have mentioned this before. I admired and appreciated all those I met on my journey who were supporting others after their journey had ended. I just did not expect to be one of them.

Here I am.

Co-facilitating an Alz.org group, working to create another support group at Alzheimer’s Association for partners newly diagnosed with LBD.

Volunteering is as helpful to the volunteer as it is to the constituent served.

Alzheimer’s Association is always in a campaign to build Awareness and find cures. Right now, they are also looking to increase their Volunteer cadre.
Call 800.272.3900 to find your local Chapter.

And here’s my thought: I thought while I was caregiving this is really unpleasant why would I want to stick around?

I think the answer is the journey is definitely difficult and unpleasant, traumatic, even, but the community support groups that are built is not. They are wonderful.

“The way you wear your hat…”

My photo portfolio is full of all those shots I took of Burt.*

Some picture of Burt is bound to come to the screen every day.

This is the one that gave me my smile yesterday.∆

* As I pointed the camera at him, Burt would say something like you really love me; you’re always taking my picture.

∆ My advice: Take lots of pictures.

Weekly call

Describe a positive thing a family member has done for you.

Burt’s daughter would call him every week. In the last year or so, when LBD distracted him from the conversation, he still smiled at the attention. She and I would then catch up.

Since he’s passed, she calls me every weekend and we catch up a little. It’s a treat for me, too, hearing from her. I appreciate the chance to connect.

Missing, miss, missed

Missing Burt since he died a little over a year ago in many ways is not so different from how I felt his absence during his illness.

He is not here and that is obvious in our empty house. It is obvious when I walk in the door or into the other room.

I miss hearing his voice and the random funny things he could say, the quirks that I found endearing.

Many of the things I miss, besides his corporeal presence and holding his hand, I missed those last years of his illness.

I miss us, and have missed that for a long time.

I miss the interaction, the dis- and the agreements, all the intimacies, the look we would share and that made us co-conspirators when in a dubious situation, the co- operation, the single-mindedness that comes with being a pair.

We morphed into a new us and changed as the journey wended us through emotional hill and dale, and I also miss those two people from that relationship. From that different relationship, the one in which care comes before partner.