this is our life

I am so touched

Scrolling through the photos in my phone always brings me to a smile worthy memory.

Below, for instance, is one of his Madeleine moments which I may be more tickled by from a prejudiced love of the guy with the cookie.

It’s equally nice to remember a Burt from before, and my scroll helps jog my memories from that before time!

There are pictures we have from ballgames and restaurants going back many years.

And that day on the boardwalk at Coney Island, at the Gates, and going full blues brothers.

Say it again.

We all need to hear it often.

Did I say it as often as I should have? Or, could have?

Burt enjoyed sitting where he could watch the river.

We, none of us, believe we are loved. We need to hear it often.

I love you, I would say, to Burt. I truly did, yes, do, love him.

Often, he’d raise an eyebrow in disbelief or in recognition?

It was a fact I needed to prove to him. I said I love you everyday. I said I love you many times each day.

I believe I never said it enough.

Now, that Burt is gone, it is with gratitude that I still say I love you, everyday.

What I did on Burt’s birthday this year

Taking a walk before a performance by PTDC

25 years later

Our wedding pictures, blown up to 12x14s, are pinned to the wall by the dining counter.

They’re there because at some point Burt wasn’t sure of who I was. This was a Visual Aid.

The problem was that at that point neither of us looked like we did on the day that we wed.

The photos were reassuring to me. I like the link to our history.

Burt was not focusing on the photos to find our connection.

In some metaphysical way, he knew I was his person even when he felt lost or alone.

We carry a touchstone of who we are to each other.

The pictures are just decor.

You Sit with Me

I imagine you at a table in 
The café in Sotheby's, one
Where an older couple sits
As I pass. I imagine you as
You eat a tuna sandwich we
Buy at Pret. I say imagine,
Not remember, imagine is 
A more vivid word. It is of
The present and I see you
In the present. You are my
Gift, my  treasure. I imagine
You as we were, transport
You forever in my heart to
Imagine you, as you were 
When you were here with me 
At those familiar places where
We were together. I see us,
You there with me. These are
Comfortable memories that
Give me comfort as I imagine
You when we were together

Musing

Today, I was thinking, with a bit of regret, that over the years I had not told Burt that he was handsome.

This twinge was triggered by a poem in which I called him “my handsome man.” Isn’t it too late to let him know now?

My regret is only half serious. Burt knew how much I loved him. I told him I loved him. Often. At least once a day.

Burt appreciated my love for him. I appreciated his love for me. As the song says, we had a “mutual admiration society.”

He readily accepted gestures as proof of love. Treats I brought home for him; the birthday books I made listing 80+ things I loved about him for several years running.

In truth, I have no regrets. I was demonstrative; I was attentive.

It’s all right to worry that I had not done enough. Self-doubt is a natural extension of loss.

I think all this soul-wrenching is part of the grieving process.

I write a poem

This is a poem because
Because I miss you and
Today I miss you more, 
Seeing your picture, one
Taken years before your
Illness changed you, when
A walk on the ramp to or
From our river path was
Your favorite way to spend
Some hours, when you 
Were strong, and active,
I miss you in that before
Time, but you know I also
Miss the Burt of the last 
Years, the five years that
Swallowed you whole, and
Took power, thought and
Reason from us. Years in
Which you struggled with
Loss and I struggled with
Losing. Today I miss all
Of you, Burt. The days you
Were strong, the days I was.

More in the memory dept.

As I leave lunch at Old John’s, I pass Merkin Hall and think Burt and I went there a few times.

Of course we did. We went to just about every concert hall in town.

Cost of Care

Axios reports, as anyone caring for a person needing care knows, that home health care services are rising.

As someone who paid for home health aides for Burt for the better part of his five year affliction, I can attest how very expensive this already was.

If only… if only we had gotten long-term care insurance…. I don’t know whether to suggest that anyone young enough and healthy enough to be eligible, get LTC coverage.

I think it would help.

I understand the resistance to participate. I regretted our, Burt’s, and mine, unwillingness to face a possible future, the future we eventually encountered.

Quitting, is that really an option?

You know what, I quit

Based on A Prompt From My Caregiver Writing Group

In the rearview mirror when I watch my caregiving technique, I wince at this.

Yes, I would throw my hands in the air in dramatic exasperation. “I can’t, I give up,” I would say, making for the bedroom door.

You know what, I quit would not land the way it was intended. It would frighten Burt. It is a threat, afterall. It would not touch the rational and urge him to agree to whatever I deemed necessary this time.

It was the wrong thing to say, not just because it was completely ineffective. It was wrong because he did not need to have anything else scary in his life. He had the dementia and it depressed and diminished him in so many ways.

My job, my purpose wasn’t to coax hardship on him. I was supposed to, I expected myself to aid and protect him. Besides, “I quit” was never the truth of it.