At the beginning

By the time I started relating our journey through the pages of this blog, Burt and I had been at it for over three years.

I described what transpired in the early days but I know it was from the perspective of distance. I feel like the beginning is the subtlest but least documented aspect of the dementia journey.

There is so much that requires us to adjust when we’re just starting. I know that I was engrossed by the details and demands of daily life.

I often forgot just how ill Burt was because of this distraction. In early stages, Burt also seemed to exhibit traits from his healthier state, once the meds kicked in.

His first symptoms, or the ones I noticed in March of 2020, were extreme.

I think I have said that Burt dived into Lewy Body Dementia with both feet.

Burt suffered hallucinations, was in the throes of Capgras, and also delusional. After the diagnosis, he started a miracle drug, donepezil, which rid him of the symptoms.

It worked well for many years. The delusions and hallucinations came back at the end, but he was pretty clear for some 3 years.

We were lucky that his delusions and hallucinations were benign.

As Burt progressed and neared the end, he often didn’t know where I was. I was with him but he felt that he was alone. On one occasion, when I said, I’m here, I will always be with you, we’re going through this together, his eye’s widened. It was a moment of recognition that I am grateful to have had.

All those good years

I promise that I will  continue to write about Burt’s struggles as I heal from the reeling loss of him.

Heal is the wrong word, so is reel to be honest.

It hurts but it’s not a pain you want to cure.

It will dull on its own and I will feel that relief. In time, I will rejoice at my good fortune of just knowing Burt and keeping him as long as I did. 

As I rejoice that Burt was in my life, I will be able to chronicle that life, our life.

I’ll have memories of my good fortune. I promise that I will share my good fortune with you.

We met

The Puck Building where it all began.

Just a month into our first year together, Burt made it his mission to give my apartment a makeover.

Once refurbished, it would be our apartment. I found a contractor whose credentials included solid quirkiness. Every few days, we were asked for more money to keep the project going. Burt was paying for the work even though we had barely committed to each other.

We had taken a trip to Newport, RI in the summer; gone to see Michael Feinstein at Kutscher’s; went on the first of many weekends in AC.

I moved into Burt’s rental on W43rd so that the place on the other side of town could get its facelift.

That dragged out over the fall, with promises of completion by Thanksgiving. Burt said he’d be happy to settle for the end of the year. That would be December 1991.

In November, on his birthday, Burt proposed and took me to shop for a ring. We were about to have a year + a half engagement.

Meant to be

Home of the NY Press; I was kind of wandering on Bleecker and lost on Lafayette when I made my return to the Puck Building. Today, that was meant to be!

Burt did a favor for Angelo one day in 1990. He went to drop off something at the Puck Building. He noticed a freebie newspaper on the premises.

The NY Press had an, also free, personal ad section. Intrigued, Burt worked on his pitch.

I was in the market. Burt’s ad was tailor-made to my intetests. My response said I liked gawking at buildings. I know Burt thought that was strange; he told me so.

I listed my office number. We made a date to meet at Tramps, a bar across from the office on Friday, May 3.

We spent the evening strolling from 21st and 6th, eventually all the way to my place on 72nd by the East River. [No, we didn’t. It was a first date.] Burt told the cabbie about me; the driver said maybe you’ll marry her. [That we did, but you know that part of the story.]

On Sunday at the Central Park Boathouse Cafe, we continued the conversation. I told him I was joining my friends C&S at a charity dinner. Black tie, sure, Burt said, let’s go rent a tux.

Over the next weeks, it was a whirlwind.

And then one morning, Burt had a panic attack. He’d had these before; in fact, he was open about it with me. This morning I wasn’t understanding at all; in fact, I freaked out. I decided I had my own neuroses and didn’t want to take on Burt’s. I sent him home.

The tuxedo event was a few weeks away; I offered to let him off the hook. Burt said he stuck to his committments. Hmmm.

There was comedy, good food and dancing at the gala. Burt was a terrific dancer, not showy just smooth. That tied it. I invited him to go out with some friends the next night.

We were on again. No more break ups, although we were known to have some whopping good fights. I used to say after his diagnosis that I missed being able to fight with my husband since it is counter-indicated when your partner has dementia. There’s a lot to miss with dementia; I made fighting the fall guy. Burt was a good dancer and a pretty smooth fighter, too.

Mourning

I will mourn you when

You’re gone, and those

Rites of your passing

Allow my grief out from

The volcano the furnace

The seismic pressure

I am holding together

While you live each day

As less of who you are

Diminished, diminishing

Lost but still here, still

Mine, not fully mine, and

Not always lost. Still

Funny, silly, bitter, and

Yes, still sweet. My love

No longer the helpmate,

The lover, the champion

Of our lives. Still lost. I

Will mourn you now and

Then. I will mourn. Now

The concept, Ambiguous Loss, is sound and disturbing. It is not the loss that is ambiguous; that is real but there is ambiguity. That lies in the fact that you are grieving someone who has not passed. Lucky you, now you can mix guilt in with the grief.

Burt was alive when I wrote this poem of anticipatory grief. I anticipated my grief, another accurate and disturbing concept, knowing I would mourn him when he died. I do. But I also mourned all the other losses we had as he declined. They call it Anticipatory Grief, which again is not completely accurate. You are grieving in advance of the full-on loss; but that grief, while you’re beloved is alive and has dementia, that grief is in real time.

Burt was still my love as he went into the decline of dementia. He was not the man he had been. He never would be again except in grief. And in memory.

These are two [of many] songs of grief. The In March poem is a companion to Mourning, as you can see in its echo.

Grieving

There are so many words but
I have only used loss; I’ve only
Said “I’m mourning” or “I mourn”
I have said “I miss you” and I’ve
Mentioned that as I missed you,
You were also missing. I knew
You were lost and losing little
Bits of yourself over time which
I noticed you had lost. A whole
Concept, a man-made construct
Time was lost to you. This not
Being able to tell time caused
A consternation. You did ask
After the time a lot. “What time
Is it?” A question that came at
Minutes apart. You wanted to
Know, to understand but you no
Longer had the sense of it. Time
Was already really irrelevant and
Lost. I knew I was grieving you
[There I have said it.] I still had
Little bits of you but I mourned,
Bereft of the partner who would
Know how to fix it. Whatever it
Might be. The companion who
Did things, set the clocks back
Or forward, the lover who would
Recognize my feelings, the friend
Who would console when I was
Sad. I grieved alone. Sad alone. I rejoiced alone. You were here and we did laugh and chat together. Your chitchat could be so very Endearing. Now you are truly lost
To me but not lost in confusion   Lost. Gone. I can begin mourning
Properly, my grief made real by
Your timely departure. You were
Able to pick your moment, time
Your passing perfectly. I have a
New concept of time now too, a
Time when a vibrant loving man
Left me with memories, a time
When that man, my man began
His long fail into confusion, and
That time when I journeyed with
Him in sickness ’til death did us
Part and I was left bereft but with
Memories of his strength, of him.
Memories of his generosity and
His love and his care. I grieve his
Loss. I mourn your passing but
I rejoice in all our time together.
It was our time. We used it well.
Bereavement, grief, has its time
Now. Memories of all our time
Fill my time now as I grieve you
And miss us. As I mourn our time

In March, after you’re gone

I mourn you now as the
Rites of your passing let
Me, permit me to mourn
You, completely, a little
At a time. Mourning, it’s
A process, I say, a little at
A time but in all this time
I have mourned you, not
Completely but a little at
A time as I lost you, not
Completely, but a little at
A time. All this time when
You were still here yet not
Completely you, I mourned
You, losing you as I did, a
Little at a time. I mourned
Through laughter and tears
That never completely fall
As you slipped away, lost
To me, lost to yourself, you
Are gone now, passed from
This realm, no longer lost,
As you were when first I
Mourned you, yet lost to
Me. I will mourn you. Now

Theater, or

Whatever favored activity

I will make the case for theater as a healing art for those of us grieving a loss as well as it may be for a nation in crisis.

Theater does not stand alone in its healing powers. Dance, you bopping to a tune while mopping the floors, or the variety you can catch on the stage or screen, is a great heal, too.

When Burt was around, I used a PBS retrospective of Swan Lake as entertainment for us. Music, ah music, it is nearly legendary as a healer.

When you’re caregiving, there is no time to head off to see a play. I get that. My theater going when Burt was alive was watching clips on our TV with him, and lots of Bluey.*


*incidentally a favorite of mine.


After he passed, I re-started my [our, truth be told] old hobby of going to stage shows. I spent a week at a dance festival and have seen several shows. I reviewed these in the past, and am doing so now.

You, of course, may have other interests. I suggest you take them up again. Long walks in which I rediscover places where we had been add layers of experience to the memories from the before.

I take photos and often comment when I share them on my blogs. I wrote blogs while Burt was alive, too, so there is a continuity for me. That’s good, I think.

Grieving doesn’t ask to be healed. It is a remembering. I have many great rememberings of my life with Burt.

Loss is an odd experience and I try to share my mourning with friends. It keeps it present for me; it keeps Burt present for me.

That’s good I think.

Like we used to do

It’s not a flippant thought, really; I do find Burt coming with me, tagging along as I wander the city.

Some places bring me memories of us. Some are new to me and I feel like we are exploring. Like we used to do.

The Dance Parade was first organized in 2007 in protest of a Prohibition-era city Cabaret Law

It’s pleasing to imagine, for instance, that I am introducing Burt to the dance parade on lower 6th Avenue. Neither of us had seen this before.

And then to see how a familiar area of NYC has changed from what Burt and I would recognize.

Grieving the loss

Caregiving is the hardest job I ever had. Or, it was until Burt died and I suddenly had a much harder job.

This, like my caring for him, is truly a labor of love.

The work of missing Burt involves the pleasure of remembering him. It’s a consolation prize but not really a prize since it recognizes his absence.

This work of recall hurts and heals; Burt is no longer present, and I miss him. I am witnessing that loss every day.

Remembering Burt helps bring him back in a way. Honoring his memory brings a smile to my heart.

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