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.
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.
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.
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.
“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.
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.
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.
We got Burt an alternating air pressure mattress.
[Amazon carries everything, and Medicare waits until pressure wounds are a dire concern before providing this remedy.]
He was lifted (as usual, these days kicking and screaming) into his wheelchair so his aide and his OT could set up the bed. I sat with him in the living room while they worked.
The mattress, along with creams and a full body pillow, will help us in the fight to keep his skin healthy.
I am grateful that the worst of his bedsores is responding to the TRIAD cream his MD. advised we use.
A friend made an objection when I defined a puree as a «velouté.« She suggested it sounded like baby food even when I prefaced it as “ersatz“.
Nonetheless, I continue to find the texture of potatoes with milk and lots of butter after a trip through my blender pleasing. And pleasantly haute.
These soft mashed potatoes are so much less labor intensive than the real dish.
Yet I am still reminded of the feel and silken tastes of a velouté.
Pureeing has made an enormous difference in Burt’s diet.
I am gratified to see him happily eat his meals.
What snack would you eat right now?
My morning was spent toiling over a blender. Lest you pity me my arduous labors, it’s nothing. Really.
Cooking was abandoned long before Burt’s diagnosis. He had grown indifferent to what I served. I choose to blame a phase pre-LBD, but perhaps my skills had grown indifferent.
Since I stopped puttering in the kitchen, I have come to miss the action.
It’s a creative activity, preparing food. There’s the satisfaction of nurturing someone with your creation as well.
Pureeing is bringing me back to that type of enjoyment.
There are schools of puree thought that say “maintain the integrity of the ingredients. Meat separate from veg etc.”
I took my cue from Burt. He’s the customer. And, by the way, he led me into my favorite “dish” when he dipped his madelines. From that simple procedure, I designed my famous breakfast mush.
I had pureed meat, vegetables, and potatoes as individual servings in Burt’s meal. He was not thrilled with a spoonful of each. When I spooned the three together, he ate more heartily.
Nonetheless, I was still keeping the ingredients segregated until… I used too much sauce in the meat, so it needed thickening. Potatoes or vegetables could provide just the texture we would welcome.
Eventually, now some meats I prepare remain as stand-alones, but often pasta ends up laced with greens. Or all three food groups are one puree “stew.”
Puree requires some lubricant, and I pick either a broth, a V8 juice, cranberry sauce, or a fruit juice to soften the foods.
The fruit compotes themselves get pureed into little ersatz puddings, sometimes enhanced with a banana.
Each “sauce” offers a flavor palette of its own. It’s the chef’s choice!
this is our life