this is our life

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.

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.