It’s a Sunday pastime of mine, going through photos, looking for the one or dozen that tickle me the most.
Rakish
Watch Burt talks coffee break 2023
This is one of two videos I have of Burt. Two videos in which I can hear his voice. The cellphone has me made others with the phone’s choice of musical score.
I uploaded this to my Vimeo feed today. Click below to see (and hear):
There’s two people involved, Burt tells me.
It’s a treat seeing and hearing him. [The other video:]
Let me turn my morning’s happy indulgence, dear caregiver, into a teachable moment: take photos, sure, keep voice mails (definitely), and take videos. That’s what cell phones are for!
This photo album Vimeo just isn’t as satisfying as the ones on which he speaks.
Caring
Witnessing a loved one suffer any long, drawn-out illness is painful.
Of course, it is.
When my mother was diagnosed with pancreatic cancer and given six months to live, it felt like we were embarking on this together. I wasn’t the one who would die, I know, but we faced her last days in solidarity.
Burt and I didn’t experience the journey in partnership; from day one of his illness, we no longer shared the same reality.
We talked, we hugged, we laughed but he didn’t have a grasp on the same big picture anymore. Those details were my responsibility now.
Dementia is that kind of a loss. I missed having a partner. I missed his support and presence. There were moments when it still seemed like he was himself. Just flashes.
I took over the heavy lifting and let myself enjoy what was left of him. There was his sense of humor; he was often thoughtful; he was very social; he was appreciative.
All that gave me a lot. Even those memories were sweet, although I wish he didn’t have to go through that.
Of course, I do.
Reminiscing
Burt was my photo model and this is one of my [many, many] favorite shots. There’s a teasing smirk in the smile, yet the fun is there.
He noted when I took pictures of him and was pleased to have the camera turned towards him. I am pleased to have such a treasure trove of memory.
The photo capture symbolized my love and he knew it. When he’d been well, we didn’t use cellphones and I bought throw away cameras to document our outings. He would initiate asking strangers to take our picture.
Today, I scrolled the phone, found videos (just two with his voice as sound track: what a treat) and put together photo albums. I marked a lot of them with the heart, too. I am far from done.
There are more that need finding and signalling out but I was sated for today.
The last 5 years
There are so many pictures of Burt, mostly during the journey, but a lot of us at ballgames, on walks having fun. The photos perch on every free surface in both rooms or sit tacked to the wall. Our wedding photos, and an album, are also part of the decor.
The photographic reminders take me back to the us from our happy go lucky first thirty years of our marriage.
Those photos are there, but I relate more closely to the pictures of him from the past 5 years.
Those are memories of the Burt I took care of, the Burt who needed my care. I remember my husband when he was healthy, too, but it’s a vaguer memory. I turn first to those years of Burt’s illness.
I’ve reassured friends that as time passed, I was focusing on the good and not the hard times that come with dementia.
Much of that good was the good we were lucky enough to experience during the journey.
It may be a tribute to how much we loved each other that I appreciated him during those last years. It was my privilege to share the journey with him.
In the end
We do all we can to give loving care for our loved one who is broken by this disease.
We are diligent and devoted. It is what we do while we give care. We are grateful for the opportunity to share the last years with someone we love.
We ensure that he has a secure and safe life, and is surrounded by our love and tenderness. We advocate for his health. We are privileged to do whatever we can.
As I see friends I’ve made during our journey come to the end of their journey of care, I feel relief for the end of their struggle just as I did when Burt passed.
When the journey ends, it’s a relief. Their suffering ends. We can stop worrying over our decisions.
The cliché that Burt is in a better place is a truth that accounts for the relief. It’s also a fact that I miss him while my burden is lessened.
Do I have less responsibility? Are my cares lifted? Yes and yes. Do I wish I’d had more time with Burt? Definitely.
Although, I know I would not have wanted to see him get any more lost and confused. He inevitably would have continued on that path.
It’s a relief, always mixed with the sorrow.
This is how it begins, first with the relief lifting off my shoulders; it is nearly a physical sensation.
My grief will always be present, welling up behind my eyes and in my heart. The sorrow, in this past year and a half, as I have found, is going to weave in and out. And so is the relief. Each time I wish he were still here, I realize that it would not be a happy outcome for either of us. He really is better off.
Burt deserved the extraordinary [redux]
Burt was extraordinary. He and I had lived a happy, carefree, and modest life. We had no ambition to stir us towards greatness. He had daydreams of coaching a hapless team with me in the dug- out by his side. Sometimes. Not an ambition. We were impressed by talent and in Burt’s case that meant […]
Burt deserved the extraordinary
Life unravels when your beloved is diagnosed with a dementia. It also begins at that point. Begins anew.
Nothing is as it was.
We had a chance at a kind of do over. We were both different.
He really stepped it up in his final act. He was excellent under the enormous trials of confusion and all the scary symptoms he faced. I got to step up in a way, too. I was his caregiver. I gave care. It was a profound experience.
Dear Reader
My superstitions always warned me that this subscription was too long into the future.
2031 is still many years away. For me even 5 years takes me near to my mid 80s. Burt would have been 92 before Aug ’31. Not ancient but neither of us cool enough to follow the Matrix.
Truth to tell, I have never been hip to its content, although Burt always turned to the back page first. He got a kick out of the content.
He was such a Fan-boy
Burt loved meeting actors. It was easily done. This is NYC, after all, and actors walk among us.
My contribution was recognizing the stars. Burt did the chatting.
For his 84th (surprise) birthday party, I invited two actors whose resumes crossed paths with very famous entertainers.
Bob’s stories amused him, but that day he was swept away by other stories.
He shared reminiscences of their Brooklyn childhood with our friend M.
These are the memories that really captured his attention at this event. He had fun with this conversation.
Expensive
The cost of this illness is enormous. Lewy Body Dementia cost my beloved his reason, his connection to reality, or more importantly to us both, his connection to me. And it lost me the connection we had had, my connection with him.
The physical connection became as tenuous as the fragmented reality he suffered.
Affection, love, transformed but it is not the same in the altered state dementia brings. It is both deeper and more fragile.
The cost was monetary, too, as the expenses of care were high and essential.
There are the psychic tolls I suffered too, and ones he must have endured that I cannot recount. There remains what can only be thought of as PTSD. Aging alone does not fully account for what ails my body now that he’s gone. And there is no way to fully assess what that loss has been.
There also, fortunately, remain memories which traverse the many years before illness inflicted itself upon us.
this is our life 