this is our life

Supporting

Healing after losing the one you love is not really about moving on. It’s about honoring and it’s about remembering.

It’s also about finding joy. A word I am flinging around these days as if it were a flag to the future.

It is important. Significantly, it also helps to continue to support others going through this journey with Lewy (and other dementias.)

I know that as time passes and I am no longer involved in that day to day of care, my advice will be dulled. My support will not.

I have acquired a new and different perspective. It’s the perspective of full-on mourning.

I still maintain that there is nothing ambiguous about your grief as you watch your loved one lose his faculties. But, the loss of Burt, entirely, is a different kind and degree.

So I can mourn and celebrate who he was, what he meant to me, both in the before and the after of Lewy. I can mourn and celebrate what he means to me, now, after he’s gone.

I can honor him by supporting others who are still on this sad, difficult journey.

Some days

My grief regimen has been to keep really busy. There are some days that the activities don’t take me out in the whirlwind.

I was feeling guilty those days, and then I thought, Why?

It’s ok to stay home listening to an audio book or podcasts, writing or drawing. It’s ok to just be. At home. With memories or new ideas.

I welcome activity, always have. I enjoy warm days and sitting in the sunshine. I value a walk. It’s fun meeting friends and talking.

I also like my peace, my time to slow down. Some days are going to be like that.

Don’t give up

As I was looking for a reference in some posts past, I found this amazing quote from Burt:

“Don’t give up on loving me,” my very sleepy sweetheart said, holding my hand.

As he drifted off to sleep, Burt called me over [why does everything have to be shared as a secret (sigh)?].

Despite my exasperation over the urge to whisper, I now wish I could hear him whispering one of his secrets to me.

I have fond memories of some of his whispers. While he was in the rehab in 2023, he would phone me to discuss an escape route.

Those were always whispered calls, usually made from a cellphone borrowed from one of the CNAs. His plans included his sneaking out to meet me by the busstop. Those calls always charmed me.

Today, I want to reassure Burt that no, I will never give up on loving him.

Reinvention

There’s a lot of re-inventing the wheel for us when we become caregivers.

It makes sense that we have to learn how to deal with the many difficulties of dementia when it strikes.

We have to learn to take on the responsibility for another person. We have to learn how to take care of ourselves.

Dementia attacks us, caregiver and the afflicted darling of our soul, in a decidely personal way.

We re-invent how to deal with it because of how personal that attack is. We face dementia as if it never happened before because it never happened to us before.

The first thing you need to do after you confirm the diagnosis is to find support. The groups at Caring Kind and alz.org will help. Your neurologist’s office will give you access to the social worker on staff. Take advantage of all the programs for yourself. Burt was not inclined to join a group, but there are those for your pwd also.

Persons with Lewy Body can turn to either Lewy Body Dementia Association or the Lewy Body Resource Center for help. I was a participant in the online spouses group, which was invaluable.

The support will help you in navigating the intricacies of the disease. You’ll ask how and why and others who are navigating through the disease will advise you.

Asking for help is so hard. Not asking will prove harder. You’ll ask questions others probably asked along the way. The answers you’ll get will help you learn.

Joy

In my post Advice, I said that I found joy during our journey with Burt’s dementia. It sounds Pollyanna-ish, so let me expound.

Caring for someone you love is a gift of grace.

The gift is reciprocal, so when Burt was aware enough to thank me, that thanks was my gift.

When he wasn’t aware, I had the echo of his appreciation; and I had the privilege and pleasure that doing for your beloved gives you.

Being needed is empowering. As is being of use. Double that when you are supporting someone you love.

The responsibility of care, no question, is stressful.

It also has many rewards. For me, Burt’s strength and love were my reward. He was often kind, and funny.

His hearty laughter and interest in others gave me pleasure. Joy, to stick to the headline.

Advice

From the perspective of after

My message for you, preparing for life with and then after, is that you find the joy.

There was plenty of joy in caring for Burt.

It was sometimes a discovery of who he was under the patina of our marriage; sometimes it was enjoying his jokes, and more importantly how much he enjoyed them, laughing heartily at his crack-ups.

Keep the joy, now, and in writing or in your art, if you practice one.

Document these years, the hard ones, for the record, for your record. Keep a journal.

Always write down all of the surprisingly wise and witty things your spouse says.

It’s the context of the comments that will illuminate these for you.
They come from the, for want of a clearer word, soul. The soul that comes to the fore as dementia steals so much else.

Eventually, you will find joy in the remembering. I remember Burt as he was, as he became these last five years. I remember Burt as he was, before the illness that stole so much of him.

All my memories of him bring me joy. It’s mixed with sadness, and sorrow, but there is joy.

I have kept the joy.

Midtown west

Our old stomping ground

After the hard years, I get to remember and celebrate all the good years

New York City Center has been restored beautifully.

It’s a bright elegant spot even with all the superb theatrical venues the City sports.

I have been a habituée for longer than you need to know. [Hey, it was home to the New York City Ballet when Lincoln Center was just a gleam in Robert Moses’ eye.]

Ballet Hispánico, *excerpts,* ***Club Havana***, choreography by Pedro Ruiz. Part of Saturday’s En Familia matinee.

As I step into its balcony seats, gazing at the Moorish splendor of its interiors. I remember the many times Burt and I had been at City Center. Although our seats were always in the first row [far-right] mezzanine.

During the Ballet Hispánico show, I note [to self] how much Burt would have enjoyed this ballet performance. I think the tidbit of Carmen.maquia (choreographed by Gustavo Ramirez Sansano, sets by Luis Crispo) would have been a treat for him. But, I know we would have agreed that the piece of Club Havana, with its colors and textured dance, were the highlight.

After the matinee, my friend J and I walk through lobbies from 55th to 57th. This is the tactic Burt would have spearheaded, too.

The hotel, now called Thompson, was Le Meridien when Burt and I used to wander in before heading to a performance. It’s an equally convenient squat for Carnegie Hall as it is for City Center. We even sometimes stopped there on the way to Radio City; although the Hilton or the Warwick where better situated.

This way of bringing Burt along by tickling memory is a habit I am happy to cultivate. It’s doubly nice that pretty much anywhere I go, we’ve been. And I remember.

So many memories, and these of theater outings and walks, are of the best of our 35 years together. I remember….

To soothe

Burt loved tap and step dance, healthy Burt did.

Burt during dementia gave Irish step a pass, at least he did on St. Paddy’s in 2023. I was reminded of this last night while watching a snippet of very enjoyable step dance at New York Irish Center.

In deference to the many times we enjoyed Riverdance over those well-years, I put Irish dance on TV. He was annoyed by it. Oh well. Guess not everyone’s Irish on St. Patrick’s Day.

Music, like dance, went in and out of favor. I had to hit the remote on Connie Francis one evening. That was counter to all expectations- play music that your loved one grew up loving….

Poor Burt, I subjected him to reams and reams of the Top10 from his youth practically every week during the last months. Before that, we did love us some Lawrence Welk on its regularly scheduled PBS revival [sigh, since canceled.] Burt even tapped along with Arthur Duncan while sitting in his Big Brown Chair.

Isn’t It Romantic

I am a romantic. It was not always thus. I had once been a self-prescribed pragmatist.

I wouldn’t be surprised if life with Burt is what turned me into a sentimental sort. I’m sure it has.

When we met, I was determined to find a life partner. I was lonely living alone and it was time. I had set out to do that. «It’s like a job,« my friend C said, meaning I would have to work at finding someone to spend my life with. For me, once Burt and I had found each other, that life together didn’t have to be in marriage.

I am pretty sure that I suggested something like that. “I’m fine with co-habiting.”

Burt preferred committment.

He told me that he’d gotten my father’s goat, as it were, when he told him upon their first meeting that he planned to marry me. [My father’s reaction should be beside the point; clearly, he wasn’t a romantic.] Burt told my father of his intentions before he ever told me.

Apparently, he also told the cab driver who took him home on the night we first met.

When Burt asked me to marry him, it was natural and easy to say yes. I had fallen in love with him and I was committed.

He took the day off from work on his birthday to propose, then to escort me ring-shopping.

Our romance was fun; love was an adventure. Marriage was just us being together.

I guess it’s safe to say Burt was a romantic. A three cards, always the sincere ones, never the funny, for Valentine’s and no fewer than 2 for my birthday, romantic.

When he became ill, I cried as I emerged from the closet where I had stored cards he’d given me over the years.

I was sure I’d never get another caring and thoughtful card from him again.

You know that Burt proved me wrong. He remembered; he went with an aide and bought me two cards; he personalized them just as he’d always done with all his love and with meticulous care.

Burt always inscribed the cards “dear Tamara” and “to my wife” and of course the date; he made them personal, detailing which anniversary we were celebrating, how many years we’d been together.

Of course, I got him a carefully chosen card for every occasion, each year, too. He expected cards to commemorate our life events. He was a romantic, sentimental guy.

He also always appreciated the poems I wrote him, romantic that I am. My poems were not always linked to occasions, and I would interrupt our dinner or a tv show to read them to him. He loved that I thought of him with so much love and tenderness.

He’d be happy to know that I am still writing about him. I guess he does know that he’s always in my thoughts.

He knows, too, that I can’t help talking about him, because under his love and care I turned into a romantic. A romantic who misses him and remembers all our life events.

I have some theories

Burt had panic attacks all of his life.

By the time we got together the anxiety was mostly and as time went on increasingly under control.

Anxiety is one of the symptoms that plague those with Lewy Body Dementia. Burt’s anxiety during his years with this illness was mild although we had some concerns about depression.

My question: are those sufferimg from anxiety disorder, perhaps, predisposed to LBD?

More interesting notes on Burt’s health issues.

He had a case of psoriasis about a year before diagnosis. His skin shed plaques and I would rub him down to moisturize. During the years with LBD, the condition disappeared. Just about 99.9% at any rate.

❓️❓️🤔

We were monitoring an inguinal hernia for several years. Burt did some exercises to subdue it just about every day. This syndrome also receded after a couple of years with LBD.

❓️❓️

The drop in Burt’s blood pressure from high even when controlled by medication to low-normal is a documented symptom of LBD. No question mark here.