this is our life

I ♥️ Support Groups

To me, it’s not a paying back or a pay-it-forward. I think of it as a graduation. I was a huge consumer of support groups while I was caregiving. I know how much I needed those sessions with others in a similar place.

The neutral space where other caregivers talk freely under the guidance of an impartial group leader helped me find my footing during the journey.

While Burt was ill, I was sure I would not want to volunteer to work with caregivers after he was gone. I looked with admiration at the many people who stuck around after they lost their spouses to help me as I struggled with the changes LBD brought to our life.

It was inspiring but I thought once the caring is over, I will want to regain my normal.

Frankly, I thought I would want to put the experience behind me.

Turns out that at this point in my post-Burt journey offering support to others supports me.

It’s an after-care purpose. I hope the people in the Alzheimer’s support groups I started to co-facilitate will get half as much from me as I am getting from them.

After care

Caregiving is a purposeful and busy occupation.

While I was Burt’s caregiver, I had focus and pep even when I was worried and tired.

Since Burt passed, just over a year ago, I have felt I was aging.

I am, of course, as time rolls by, but it feels as if I went from energetic to creaky.

There’s the let-down when inertia slows to a halt.

There’s the sense that you are in need of recovery. Caregiving does take a lot out of you, or at least it took a lot out of me. I’m pretty sure this is the common experience.

You have gone through the trauma of your spouse being ill.

You had the trauma of losing your spouse to dementia.

Now, you’re carrying the scars of his or her death.

That loss puts you into the trauma of a post traumatic time.

Grief and memories age you, they have clearly aged me.

I do

While I was in the midst of caregiving, an acquaintance suggested I pursue a flirtation I had mentioned to her.

“Don’t think of it as cheating,” she advised. Of course, I would. And of course, in its way, it was not. Well, yes, strictly speaking, of course it was.

This is a delicate point as our spouses are not the people to whom we’d pledged our vows. The illness changes everything.

Yet, I was still married. I took my vows, in sickness or in health, (and acted on them) with complete seriousness.

Caregiving was an expression of my devotion. It was also their fulfillment.

As the disease progressed, we no longer have a physical relationship. If I had been younger, the temptation to step out might have been more pressing. It’s a sensitive (and, of course, utterly personal) subject.

If I had been younger, perhaps, caregiving might not have taken so much of my energy. I don’t know how I would have acted. It is, as I said, a completely personal decision.

It is, as are all things in a caregiver’s life, not something open to judgement or censor.

Burt’s memorial plate, my memory

The plaque in memory of Burt is in its place in the God’s Love We Deliver kitchen. I will be checking it out in person soon.

It’s fair to say that, in fact, time dulls memory. You want to remember all the highlights from years together. At least I do. And, mostly, I can.

Some memories flood back, tickled by ongoing events or musings. Some are hazy and I wish I had a less fuzzy picture of them.

Memory, sadness, it all changes over time. Just as I am grateful for the years we had together, I am also grateful to see the grieving in a new perspective. Sadness comes and goes. Memory, even when it’s fuzzy around the edges, stays.

Caring

The directive that we take care of ourselves is so annoying. You have enough on your plate taking care of your loved one.

Caregiving’s a hard demanding task and isn’t it just natural to watch out for oneself.

I know I resented the reminder even though I regularly did what I could to care for myself. Caring for Burt was the remit, of course, but I did not want to be an afterthought.

Memories of Burt, Always Burt

Once upon a time, Burt and I had been at a Mets game [there were lots of Mets games] and I have a picture sitting on a shelf next to a more recent photo of us together on 78th St. Both good memories, juxtaposed to make me smile. Like a before and after. Just not quite all the way after.

Today, I heard from Nigel at God’s Love We Deliver about where to place Burt’s plaque. It will be in a column in the Joan Rivers’ Bakery facing 6th Avenue.

As I wander the city, I am always faced with a scene from our past. I want to joke and say of our crime, but the memories hold way too much meaning for me to joke.

Sometimes, in those familiar spaces I encounter a new point of view, one I would love to share with Burt.

Yesterday, it was revisiting the beautiful outdoor balcony at Claire Tow, today it’s an elevated pizza parlor on Madison and 91st. Lots of sweets.

For my sweet, I enjoyed a Stewart’s Root Beer which I had not had for a really long time.

Outside the Claire Tow Theatre after a Reading of Miranda Rose Hall’s Work of Devotion and the pizza parlor on Madison & 91-92.

Like me, the 1426 Jukebox [on display in the Sound Design exhibit at Cooper Hewitt] was born in 1947.

The year Burt and I met, we went to a party in the Carnegie garden of the Cooper Hewitt. It was a perk of membership. Today, for one of my art dates with LisaMaria, I again joined the Museum. Whenever I sit outside at the Cooper Hewitt, as Lisa and I did for lunch, I think of being at that garden party with Burt. I expect that I will go to their summer festivities soon and I will return to the galleries again soon.

Video memory

Waiting for my old cellphone to migrate to the new one gave me an opportunity to catch up with the video of Burt in the rehab.

He came home from the facility on February 25th, 2 years to the day before he died at home. The video is just under 7 minutes and in it my voice is much louder than his. Burt is having a snack in the day room and chatting sweetly.

It’s a treat hearing him speak but his expressions are what enthralls me now. At one point, he raised his eyebrow in an all-knowing gesture that had me giggling in delight.

My ChiGong class

My balance, strength, mobility and endurance are all subject to challenges these days. It’s an aging-not-so-well thing.

Many of us oldsters are fairing better. I attend a ChiGong (or, you may know it as QiGong) class with the goal of righting my ship of state.

It is a gentle exercise protocol that calls for balance. My class is generally comprised of a bevy of older women.

When a couple of, also older, men showed up, I wondered if Burt would have taken up this practice. I think if he had been a widower, this is exactly where he would have gone. He would be in the gym with a group of age-appropriate ladies looking for balance.

Step by step

It occurs to me in passing that I no longer walk normally down steps. Its a thought that comes to me as I see a young woman pick her way downstairs.

On its heels, the memory that Burt would warn me to hold the railing. Don’t be a štarker, he’d said.

I guess that translates best as Don’t show off, or don’t be a wiseguy. For many years, he had always held on.

Now, I also always hold on tight.

It’s one year since Burt passed

Looking at the wedding photos hanging over my kitchen table, I realize that I am beaming.

I’m stupid-giddy in these photos. This night, I raise my glass of Polar club soda in a toast to him for that happiest day; then to us both for all the great years we shared.

Someone I met while we were all on the LBD journey said if she’d have known about what was coming, she’d have married her husband any way.

Those words resonated with me then and reverberate now. It’s a truth for me as it was for her.

So, here’s to all the years we got to be together.