this is our life

«Do I love you?«

I’ve just said, “I love you” in response to his conversation. I did not understand what he said. “I love you” is a standard retort.

It reassures me/him. The minute after I affirm my love for him, I doubt myself. Why do I run from the room, leave his bedside mid such conversations? I state the love and leave. Do I really if I am pulled away?

His childish logic and ill-formed reasoning is heartbreaking.

Every interaction tugs at my heart; I exit the room in the mode of self-protection. I don’t want to feel pity for a man so diminished by his disease.

It’s clear that it’s more than pity that drives me to proclaim my devotion.

I do feel the sorrow of it. I also really truly deeply feel the love.

My coda is from Moonstruck in approximated text

«Do you love him, Loretta?« «Awful, mom.« «Oh that’s too bad. When you love them, they can break your heart.«

The balance sheet

What’s become easier in Burt’s last decline?

We feed him.
No more bowls of food flung across the room.
No spills, either.
It’s generally tidier, I guess I would say.
I value the sense of peace and intimacy I get from serving him this way.
All his food needs to be pureed.
This can be fun and sometimes even feels creative to me.
He’s not getting up to walk.
No fear of his falling.
Less physical effort in getting him upright out of his chair.
Likewise, off of his bed
He’s confused, disoriented and hallucinating more.
There’s less drama over my absences.
My time away is really a respite;
I’m not interrupted while at the gym or during lunch;
He doesn’t call in the middle of my support groups.
Despite the confusion, he seems content.
I know he’s well taken care of by his aides.
He chats with them as well as with the hallucinatory friends he gathers.
His anxiety is generally reduced. He seems less prone to agitation.

What’s harder?

We feed him.
Feeding is physical work.
My shoulder as well as my back feel the effort.
I worry that he’s not getting enough nutrition. To be fair, I always worried about his calorie intake and the variety of his foods.
All his food needs to be pureed.
This takes time and organization.
He doesn’t get out of bed.
He’s lost muscle mass in his calves. I mean, that’s visible to the naked eye.
Changing and cleaning him in bed is physically harder.
He risks [and has] bed sores which have to be monitored. More vigilance and worry.
The bed sores and his skin in general have to be treated.
He needs to be turned every few hours.
For me, right now, this is not possible.
We are doing our best. I am doing my best. It’s not good enough.
He’s confused and hallucinating.
It makes me sad that he no longer notices that I am gone or asks when I’m coming back. It’s nice to be missed.
I don’t miss the drama, just the emotion around being needed.
He doesn’t call to interrupt my time away from him.
He seems content, chatting with an imaginary crew.
Of course, his being content is a good thing! But he’s also absent.
I miss him. I miss my husband. I miss Burt.

A treat?

Standing in an aisle at Duane Reade, I realize that I won’t be bringing Burt a chocolate treat. He can’t eat chocolates the way he once could.

I’ve been breaking a little piece into littler pieces for him, but he’s not getting the kick out of it anymore.

Now, I add dark chocolate syrup to his ice cream for the flavor or give him a protein rich chocolate drink from Bolthouse Farms.

I hadn’t thought about it until I stood facing the Valentine display on this cold, cold day.

It’s heavy

In my encounters with friends and acquaintances, I feel heavy. Physically, of course, I am.

It is the sorrow I carry in my heart that makes me feel weightier.

This, I think, at each conversation is not the gravitas I hoped to achieve.

I have toned down the impulse to spill it all. I no longer overshare on cue.

I talk on topics more neutral than my sadness, like religion or politics.

Even addiction or sobriety seem like safer subjects than the details of my emotions. Of course, there is no news. Burt’s decline is just what it is. No real change once I acknowledge it.

My feelings on that front don’t change either. I am sad, and it’s hard to see him so lost. Lost to me; lost to himself.

I still know who he is even when he seems uncertain.

I can still laugh. I can still feel the tenderness of love.

That lightens me. That’s not so heavy.

Am I repeating myself

When our podiatrist visited, her shock over the change in Burt over two months became my shock.

There is no escaping the fact that a progressive neurodegenerative disease degenerates. It’s the only progress it knows.

Those of us who are living with it are serially surprised. It often or sometimes takes other’s eyes to show us that which we know.

I am so glad that our podiatrist left me with her positive remark. She said «you can see Burt’s still in there.«

I had my shock and my reminder to keep reaching for him. To keep connecting to the man I love. He’s in there.

Teary-eyed

Can you share a positive example of where you’ve felt loved?

Burt has always made me feel truly loved.

Even these days, when he seems not so sure who I am, I still know he loves me truly.

I am entirely delighted by the reassurance of this truth.

Call and response

“Burton Philip… we’re having a good day.” I am quoting the random callout Burt made last night.

His conversation is ongoing, and he is addressing someone with questions and a flow of dialog. This is an evening ritual. Who am I kidding? These exchanges can go on all day long.

My friend J is right. What is happening in the LBD brain is fascinating. I just wish it weren’t happening to our spouses.

I will take comfort that Burton Philip chose to announce he was having a good day.

Letting go

What was true a week or maybe two ago has changed now. It will always change.

I can not cease worrying because there may honestly be something worse or just different about to happen.

Things are harder with Burt in bed all the time.

Have I mentioned that?

I know I have spoken of no longer worrying that he’d fall. That part’s easier, for sure.

Burt seems content to just stay in the bed.

He seems content in general. I would say his anxieties and fears are greatly abated. That part is not just easier but also gratifying.

It is his physical care that now requires more effort. It takes two of us to turn, hold and change him.

He resists much of this, as he resists being helped to standing so we can transfer him to the wheelchair. His resistance adds pounds to the weight of him.

The longer he stays bedbound, the more strength goes from his legs. You can see the weakness in his calves.

This means that standing even with help and support will be harder for him.

It occurs to me that he may not want to stand or walk anymore. That’s a dream of mine, that he be mobile again and that we go places. He may not share that dream with me.

As I said, he seems content.

Call me!

A recent revelation that perhaps Burt recognized me as a presence on the phone was confirmed. Sort of.

He heard me speaking with a visitor in the livingroom; the voice led to his asking Ruthy where Tamara was.

A kindred carer reported that her husband insisted on calling her on the phone. Like me on such occasions (and Burt had made similar requests), she objected that she was right here.

Unlike me, she acquiesced, and they had cordial conversations, which her husband would repeat to her afterward. He had the pleasure of the experience and the recap. Actually, I suppose, they both did.

This falls under the rubric of entering their reality. Advice one often hears in the world of care for a person with dementia.

There were times, when Burt used to call me as I was coming home.

I think I overvalued my in-person presence by hanging up as soon as I came in the door.

Now I know. If he asks me again as he has when I’ve said “it’s Tamara, your wife” to bring her to him, I will resort to a cell call with him. I’ll dial me up from his phone and I’ll answer mine. Who knows, perhaps we’ll chat.