“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!
Supported was a tangent that derailed my intention to discuss support groups.
These have been a vital life-line on my side of the journey.
Early on, his first neuro team at Mt Sinai guided me to regular sessions with their social worker. What a gift that was.
The social worker from his current neurologist’s office leads a group I attend monthly now.
Early in my travels, someone suggested I speak with Norma. (I did. We spoke for an hour and a half.)
Lewy Body Resource Center, founded by Norma Loeb, provides life altering help through support groups for those caring for a person with LBD.
I now attend one or two of these each month. Sometimes, I connect with a third one as well. We LBD carers share more than just the diagnosis, the symptoms of which both baffle and amuse.
On line, I use the message board of LBD Caring Spouses daily. Tips, suggestions, experience flow back and forth on the site.
On a Wednesday morning, I find myself in an alz.org spousal group, and then I head over to an intimate LBD Resource Center support group. Zoom meetings are so convenient to navigate.
I think I attend a half dozen each month. My special pleasure is the Caregiving Expressions, also an alz.org resource, where we write our experiences.
On occasion, I take advantage of a nearby support group and pop in in person. My local Lenox Hill Neighborhood House has hybrid offerings; you should seek some through Community Centers in your hometown.
In fact, no one should attempt this lonely energy-sapping excursion on their own.
Find support through CaringKind or Alzheimer’s Association or in online workshops.
There are many online supports: Dementia Alliance of NC and Caregiver Teleconnections. Teepa Snow or Dr. Natalie’s Careblazers. The Lewy Body Dementia Association has a YouTube TV channel.
There’s a lot of support to be found. Google it, find it! As the old ad used to say, “You’ll be glad you did.”
Burt has me and his excellent aides as his support. He gets visit from a very caring OT and PT team.
He also has a fantastic crew of doctors and nurses from Weill Cornell Center on Aging to keep his well-being on track.
It’s not easy maintaining his quality of life at the best it can be.
He can only describe aches and pains in the vocabulary of generalized anxiety.
Otherwise, he is contentedly manic, talking to “his friends in the ceiling” as an aide put it to me.
In short, if anything is awry, we have to catch on.
Emotionally, and we’ve already established just how rampant feelings and moods are, he’s either “scared” or happily gabby.
We go along for that ride. “I got you” is a standard refrain.
His bedbound state makes his physical care harder.
The vigilance has turned from fears of his falling to feats of our strength.
He has to be turned side to side to get him changed. He needs to be placed on his side to mitigate the danger of pressure sores.
He resists the turning both physically and very vocally. We trot out “Don’t be scared” and the old “I got you.”
Clean clothes and the mild exercise he gets in this morning ritual generally put Burt in a good mood.
Yes, Burt, I got you!
It feels like betrayal. I know it isn’t, but since I say Love is lovlier how could I?
Since Burt’s been bedbound, I felt it was time. Since he’s in such a decline, he couldn’t participate.
I met with his doctor to file a MOLST on his behalf. We also opted for a palliative approach to his care.
The MOLST is necessary. It’s the do not resuscitate order. If your darling is stuck in a degenerative neurological disease, you want this in place. You may want one of these for yourself too, btw.
It was a hard thing to sign. It’s posted on my fridge. It’s just in case. You know.
Oh dear. The second time around. 🎼
For me, the second time is really the years after diagnosis and the symptoms. I am the second wife, but Burt is my first. And only.
I know, I am laying it on with extra schmaltz.
There is something to what I heard from a recently widowed LBD wife years ago: we find a deeper love for our person as we care for him/her.
It might be that we now see our spouse more vulnerable. S/He needs us more than ever before. We are needed; our care is needed and wanted.
It’s nice to be wanted.
We’ve lost the partner we used to bounce ideas off before making decisions together. We’ve also probably lost much of the physical intimacy that makes up a marriage. We can’t rely on the conversations we used to love or enjoy most of the outings we had.
Things are different between us.
But….
But, Burt accepts my care and help and the outreached spoon sweetly and graciously.
I can make our lives in the years of his decline as good, happy, and comfortable as possible.
It’s my responsibility, and I am grateful.
this is our life