We have Emily Dickenson to thank for the wonderful image that gives hope all this lightness. We can always use some feathers whether we are caregiving or not.
It was definitely a better choice when I returned Burt to his morning meds first thing. He has, in consequence, returned to some measure of sharpness.
The delusions, hallucinations, and Capgras continue to keep him in his alternate universe. It just seems like a happier place.
He’s back to being impish.
After his fall
Burt is a recoverer by nature and determination.
It’s 11 days since he bruised his knee, and here he is getting approved to go out walking again.
Not only that, he’s not screaming in pain over it.
In fact, he’s blaming the other leg.
How’s he doing? Doing well.
Lewy lou-ie
I can do nothing to make Burt know who I am. I feel like I should be able to force the issue somehow.
It is heedless and needless to allow his who-are-you’s to distress me. It’s the disease.
Our weekly outings are very exhausting. In the evening, when we get home, he has to ask me who I am. Which wife? is not a trivial question.
So much for “he will always know who you are.” We spouses of Lewy Body p.w.d.s are led to believe that we will always be recognized. Perhaps if it weren’t for Capgras….
So that too is exhausting. I am giving myself a 🌷⚘️🌿☘️🌷⚘️🌹🌷🌷🌹🌿🌹🌹⚘️🌹🌿
I am still grateful that our early to bed project continues to thrive.
Strength to deal with this disease lies in keeping a positive outlook.
Our outing collage
The great outdoors
Still a puzzle. All week, he’s talking about loving it outside. It’s a gorgeous, warm, agreeable day, but Burt is not. Agreeable, that is.
We’ve discussed his fear that we won’t find our way home both privately and with his “driver,” the weekend aide.
On this occasion, he recognizes that I am with him. So it’s not that he lost me. He just says he hates it. I put down my phone and use it only to take his picture. All my attention on him should help.
He does agree that if I am going out, he will too. Wonder what is going on in his emotional core. Oh well, at least we are outside.
Burt loves the heat, but perhaps it’s just the heat making him dull and making the pleasant less so.
Don’t get me wrong, we’re in the shade, and I give him plenty of liquids.
It’s all very serious to him, but I have to keep it in perspective.
One big thing
It’s a small thing that’s true, but just a few weeks ago, it was an all-consuming (pun intended) huge thing.
The food fight at the Beck house has subsided. That my friends is one BIG thing.
It’s not just that Burt’s asking for food, but he eats avocado and yogurt. Yogurt! I even gave him a spoonful of hummus.
And, some of this experiment is accompanied by disparaging words about what he’s eating. Yet he eats.
I feel like a weight has been lifted when he takes spoonfuls of trout and baby Brussels sprouts. He’s 84, it’s not going to be a very big meal.
I’m impressed by the variety and spurred to think about, to plan for more.
Dinner time is getting to be fun for us.
That’s a BIG deal. Bon appetit.
My poet
This is what I needed to move from the darkness I have been feeling. [To wit, a poem called Seeking Joy, which hardly hit its mark.]
It was a contribution by my love, my p.w.d.
Burt said something that was very uncharacteristic. He told me, “You’re talking to a poet.”
I said, “You are the poet of my soul.” My response was heartfelt and expressed my gratitude at his unusual utterance. Like his statement, it was uncharacteristic.
In the meantime, I had occasion to try to right my floundering ship of mood with another poem. It, too, was heartfelt but sprung from sadness.
Further support was a prompt in my caregiver writing group. This evoked sorrow but allowed me to fight through it. It offered a chance for me to buoy myself up.
The prompt was, “They’re looking good. The invisible burden.”
Here’s what I did with it. Note the reminder to look for the positives in care.
He’s doing well, they’ll say. No response to that makes it any easier. Yes, it’s a progressive illness, and we’re doing what we can. He has good days. I’m glad you got him on a better day. Your visit certainly perked him up.
In truth, I have rarely had to deal with that.
Burt’s pretty transparent, as it were, about his progression. I see more of the decline than others who aren’t with him all the time, but his confusion is evident. He’s not invisible; his disease is in the open.
He can be very clear about his demands, his needs, his wants. That can fool even me into believing he’s stronger than he really is.
Early on, his moments of clarity were a welcome opportunity to deny the realities of his illness. Denial is behind me now, and I face the truth of his decline minute to minute.
I need to say “he’s doing well” more often so I can appreciate what of him I still have.
Weighing the options
Let’s get practical about what is involved in care for your p.w.d.
I advocate getting an aide early on when perhaps all your dearest needs is companion care.
This is for you, the spouse or family caregiver. You definitely need the time while s/he is with someone.
The expenses are astronomical. I know not everyone can afford to follow my guidance. I couldn’t afford not to.
My time, aka me-time aka my own sanity-check, was an existential necessity. From day one.
Today, with Burt slipping ever more deeply down a slope of incomprehension [all right, it is I who has trouble understanding], it’s even more existential.
I need time to recharge, to see friends, have lunch, and exercise.
Even with my precious 5 hours a day, I am often frazzled. My short fuse needs the time apart to appreciate the good interactions.
Never mind the messy ones.
Time is not the only
A poem
So much has gone missing
As I mourn your losses and
The loss of you, the loss of
Your thoughts, recollections,
The loss of who you were or
How you form ideas, come
To conclusions. All the loss
That is clear, and all that is
Ambiguous, waiting in the
Wings for the big finale I am
Sure will tear my heart into
Many more pieces, break it
Again and again, as if you're
Being broken hasn't torn it
Apart. Time once was lost
Yet it still marks the losses.
All the time. Steadily. But oh
So slowly, and unpredictably.
So much has gone missing.
I miss you so much. All the
Time.
Poems of time and remembrance
He told me all his stories, so
That when this day came, I’d
Be the one who remembered.
Love song: if I remember you
When he lost the wisdom of his age
[Like] Lear on the moor
You, my beloved, not only lose time/You misrepresent it
His time is lost and eludes him
Only reminds me of how much time we have lost…
I remember memories, his, mine, ours
When time became a flight of fancy
They agreed to restore sorrow to the vocabulary of loss
The one about time losing its meaning
Hold on
I’ve got you, fight me all you can
Fight me all you want and with
All your mighty might, and all
The will you can muster. Yours
Is a strong will, you show plenty
Of determination, so do I. I am
Determined. I won’t let go of you
I will not let you go. It’s not yet
Our time. That is our time is not
At an end. You and I will have this
Time as our own. I’ve got you now.
I am not ready. We are not ready.
Not now. I’ve got you now. Fight
Me all you want, but hold on tight.
What time is it?
When he stopped recognizing time
I had to know what time it was all
The time. Day and night for a while
Were his to mix and match but I had
To know what time it was all the time
Day and night. He would ask after it
Knowing that it was eluding him but
Wanting to keep track of the time all
The time. I had to know what time it
Was all the time to share the time
With him. I had to know if it was day
Or night, morning or evening for him.
this is our life 