this is our life

Aggression and Lewy

It’s a possibility. Especially with LBD.

I’ve mentioned that Burt had a period in which he exercised his anger and aggression. It was due to his aggressive behaviors that we were introduced to mild doses of Seroquel.

In his case, the drug made him sleepy and I could dodge his attacks more easily. It did not calm or quell the aggression.

His aggressive behaviors were mild and this phase lasted a short while.

I worried ahead of the events and felt lucky that his aggression was mild and manageable.

It’s a real worry and I had heard of spouses with extreme rage who posed constant danger to everyone around them.

Early on, because he was prone to anger, I worried Burt would rise to that level when dementia struck. I was thankful that he did not, and grateful that most of our journey was relatively easy.

I don’t want to downplay the possibility. Nor do I want to raise the level of alarm.

Be prepared. I have mentioned that I secreted our knives to a closet after Burt brandished one over my head. He had every confidence he wouldn’t hurt me but that incident unnerved me.

Anything can be a weapon, of course, and Burt’s weapon of choice had been his shoes.

He threw them at the wall when frustrated, but one had gone just over my hair line. Burt was again confident in his aim; he said so.

I don’t think we should cede the responsibility of our pwd’s aim to their control.

You don’t want someone who has delusions, or hallucinations to have access to a deadly weapon.

If you have firearms in your house, disarm them; give them to law enforcement if you can; get them off your premises, or at least lock them up securely and out of harm’s way.

Be prepared, but don’t anticipate. You may never experience any violent episodes with your loved one. Or, if you do, they won’t be extreme or last long. Minimize the possibilities. Take control here, just as you had to with finances and healthcare.

You will understand if I say I am sorry. It’s the disease, not your darling.

Sweet Dreams of You

Recalling my dreams is unusual for me.

In fact, I generally awake certain for sure I did not have a dream.

I am told that that is not possible. People dream, I hear.

The other morning I awoke to the end of a dream, disappointed that Burt was not sitting next to me.

The dream was, in fact, deeply vivid. Burt and I went out for a drive.

I parked the car, a two-tone late ’50s era Plymouth, grey or dark blue and white, in a garage.

We went to sit in a gazebo, where we talked quietly, as we often did. Burt’s seat was a big wicker chair. There were others in the gazebo.

When we felt chilly, we decided to go back to the car. Burt said “we’re taking this plant stand with us” I said okay, as long as we don’t get caught.

It was clear in this dream that Burt was right by my side, close by on a cushy chair to my left.

Then I awoke, and he was not next to me. The dream gave me the expectation of finding him by my side, just on my left shoulder.

That realization that he was not was a moment of great shock, like having ice water hit me in the face.

It was, also, so very nice spending a little time with Burt while I dreamt of him. Even the memory of my dream, of my dreaming makes me smile now.

That was a sweet dream.

From some writing session prompts

Resilient: hey, tough guy

Burt in dementia was clearly and increasingly vulnerable. His losses were evident, yet, through it all, he maintained a resilience that served him well. I thought I was steering the ship but my captain somehow kept his hand on the rudder. We bobbed through troubled waters with Burt somehow maintaining an even keel.

I say his resilience served him well, but really I benefited from his willingness to stay strong and tough when and as long as he could. I believe with all the leap of faith in me that he knew where the end was and went on to the end courageously in his own time. I wish him a safe harbor after his travails.

The changes this disease brings!

As the disease goes on, you realize that there’s a sense of rapid acceleration. Every day feels like something changed and many – not every- changes are a challenge.

Burt was often a new man, a different man one morning to the next.

Confusion when it rampaged made the differences more pronounced. I had time, and the resources he had lost, to adapt.

Burt’s illness left me a more compassionate person. I had to cut him all the slack in the world; in part, because it was best practice for dealing with someone with dementia; it was also out of a recognition of his fragility.

Burt was vulnerable and I took it upon myself to care for him. If I was to look after him, I had to do it out of a place of caring. I am thankful that I found that place in myself.

We are not tough guys in a knife fight, you know. We are all human and need each other’s kindness to thrive. Burt helped me find that better part of me.

Abandonment/Surrendor

We were chatting before our writing session came together. One thing led to another and that was the Tarot, The Hanging Man, Le Pendu.

It’s a rakish card, actually, suspended feet hung up, but quite at ease. It’s actually The Hanged Man, and ironically or forebodingly it’s about letting go. Surrender.

Surrender does not equal giving up. It is not about abandoning the project that is life. Surrender is the ease of acceptance.

Abandonment plays its own part in getting us to acceptance. We abandon, let go, but we don’t give up, and find ourselves able to surrender.

The Firehouse

Back in the neighborhood with the reminiscent firehouse, I am early^* for Fresh Tracks at New York LiveArts. Once again I am reminded about Burt’s encounter with the fireman all those years ago.

^*I went extra early with the intention of snacking and sitting at Ama Vita on W19. It’s closed on Saturdays?¿

Of course, my memory awakens to the fact that that firehouse was near the Time Warner Center in the Columbus Circle area. I am remembering Burt’s admiration of the young man who showed him around that afternoon.

It’s a good memory, of course, since it is connected to Burt. And it isn’t about the actual location of the firehouse.

Burt this Wednesday morning

It’s no secret that my walls and screens prominently feature photos of my guy. Seeing him with a this is a good day smile on a screen this morning, I had a pang of miss him. And in that moment, the pleasure of seeing him.

More importantly, the pleasure of seeing him happy. This lead to a rumination, and a hope, that he had had a good life. My hope is that I helped make his days good. I know we both did the best we could, and despite it being a Burt catch phrase that doing your best “is not good enough” in fact, it was. That smile tells me he knew it was.

Perfect

The thing about perfection is that it does not stand alone. That is to say, it is relative, as in what is perfect to you or for you is not objectively perfect. In the eye of the beholder.

We are all flawed. We are all perfect.

So, Burt was perfect. I remember some rough spots, some edges, some exasperating habits. And all that just added up to perfection. Burt was perfect for me.

No surprise

She could no longer sneak out
With him to see the world through
His fresh eyes; one blue, one with
A small cloud of the nevus, brown;
Eyes, opened wide with the surprise
Of knowing she loved him, of how
Much she loved him, surprise and
Delight. His delight, recognized so
Suddenly, and so often, delighted 
Her; it was a shared delight in their
Shared love. They could no longer
Sneak out to enjoy their mutual 
Love, but it was theirs, is theirs still
She could always remember that.

Acting my age

In the little over three months since Burt’s passing, I have begun to feel old. Well, to express it more accurately, I have begun feeling my age.

My first, initial, reaction was that the strain of care, worrying about Burt’s physical and emotional state, lifted. That came also with a lift of my shoulders a few days after he died.

The last month or two, every muscle has tightened and my joints all ache. It might be that I am now, in the midst of grief, experiencing the strain of mourning.

My theory is that, actually, this is how old I am. While Burt lived, I needed to stay fresh and mobile for the sake of his care. My years are simply catching up to me now that he’s gone.

Time will tell.

A conversation

These are the times that try our souls.

In light of the advent of big trouble in our nation’s social and political landscape, I found myself asking Burt for advice. I started by saying I was glad he was out of this and safe. If he were here I would stand silent to avoid any risk to him. “You were not a take-to-the-streets kind of guy,” and yes, I said it aloud.

“But, honestly, this is too much.” I asked Burt if I should stay silent, stop walking with those who are resisting. I said [again, yes, aloud] “Isn’t it just plain wrong?”

I think I know he would err on the side of safe-and-quiet. I know that I can not heed that advice. I also know he would be proud to support me in protesting because it is just plain wrong.

Finding out

It had not occurred to me that anyone faced with caregiving alongside a person diagnosed with dementia would not seek… help, to learn all possible. I know you would not be following along here if you were that incurious.

To my utter surprise, I met a disinterested spouse recently. I gather she had gone to an intro meeting, but apparently stopped at Previgen didn’t help?

Of course, it doesn’t. I don’t mean to be judgmental but this lack of basics hit me.

It’s bad enough and hard enough to approach the role of caregiver armed with the knowns and the not-knowns.

If I am serious about being non-judgmental, I will let this go, and be grateful for her that she made it to the end of her journey.

Let me advise you, if you are starting life with your loved one with a dementia diagnosis, to find out all you can. Seek assistance. Be informed.