They brought us oranges today. The “they” are the lovely people who cater our Meals on Wheels.
I love oranges, but they’re work to prepare.
This evening, as I looked at the orange in anticipation of cutting and peeling, I remembered that my mother always prepared my oranges for me.
Years ago, when I shared that with Burt, he took over orange chores.
He always gave us quarters to chew on. I called it the “smile” solution.
This occurred to me today:
It is not fair that I have violated Burt’s privacy in describing our journey.
I have shared his delusions with you; I have lamented his decline; I have exposed his hallucinations; I have described his terrors and his joys.
It should be enough that his Lewy Body Dementia diminishes him.
I should not be laying bare how his pernicious disease steals who he is.
Yet I am compelled to do so.
In part, it’s because the writing serves me well. The caregiver has to matter, too. I don’t mean that in a glib way.
Our journey, as I describe it, is entirely from my perspective. I hope that is of help to others on this side of the experience.
Burt has, alas, lost agency in his life.
He also lost the self-knowledge he once had about his plight. I am grateful he is no longer aware of Lewy.
His innocence over his confusion adds a blissful improvement to his quality of life.
I think if he knew, if he understood that he would want to participate in sharing just a bit too much.
My love thinks he met yet one more new wife. Today, this gave him qualms. Briefly.
Can I have more than one wife at a time?
I said you’re the exception to the rule. It’s ok for you.
He is very happy with this one. She’s mostly nice to him; an exception to that was when I said no. “We’re not going down 68th Street.”
We went all the way down to the 60th Street play area overlooking the river. The Friends of the East River Esplanade had a party with music and ice cream. Salsa and the river view appealed to me. I wondered if it would appeal to Burt. He was content.
This was the way we joined in to virtually walk with CaringKind. Thank you all for helping our fundraising hit the $545 mark.
It was a beautiful day for it, as I’ve heard the Brits put it.
Much is lost as LBD progresses. That doesn’t mean we’ve lost everything to this disease.
We still exchange affection in words and deeds. We kiss. We hold hands.
We express how very very much we love each other. Often.
He still says thank you when he wants to show appreciation. More importantly, Burt still knows how to be appreciative.
There are glimmers of the man he was.
We connect verbally. Burt talks a lot. He loves to talk.
Even when what he’s saying is confused, I am grateful that he’s still communicating.
Often, what he says is funny. He likes the sound of our laughter. Making people laugh makes him feel good.
“I like to talk to people,” he’s telling me now. “I really do.”
There is no logic, so Burt has odd explanations of how things – even in his own body – work.
Being able to define tasks, follow through, and find order go out the door with logic.
Things he knew and understood are forgotten. This is not memory loss it’s cognitive impairment.
He doesn’t recognize his wife, [that would be me]. This could be amusing, but it is mostly sad and unsettling.
Since he is convinced that there are multiple Tamaras, I often wonder which one I am. He can’t help me with that.
There are many things now with which he no longer can help.
He asks me to identify myself, but often doesn’t take the answer at face value. [Now there’s a funny image to go along with this particular frustration.]
In the short term, there are things that are forgotten. This is, of course, memory loss.
The components of what is called executive function are also lost. Inhibitions and impulse control, as well as any ability to plan, are part of this loss.
Working memory falls under this loss, too.
His sense of time has changed; time basically has no meaning, but its illusive nature haunts him. “What time is it?” is repeatedly asked.
The answer is seldom heard or understood. His watch stopped, but before it did, he would reset it several times a day to a wrong time, one different from the one we told him.
Burt’s memories are a jumble. His confusion sometimes feels as if it’s contagious.
Language is a mysterious blend of made-up words [an intentional quirk] and unintelligible ones. It’s sad because he loves to talk and he really wants to communicate.
Numbers don’t add up either. He was a finance guy, so this is losing a part of his self, his being, his history, and his story.
There are many different kinds of optimism to sustain us.
White pants are the one variety that I am sporting.
For instance, I am expecting not to be covered with stains but am also planning a trip for ice cream today.
I had been feeding Burt to spur his eating. I know it’s better to encourage independence. He can still manage on his own. Now I am mixing it up.
When it came to the ice cream, I mostly let him deal with the cups himself. He spilled very little [and that onto his jacket.]
I swell with unreasonable pride when he eats anything.
It’s irrational, but I was so very pleased that he had a kiddie cup of strawberry and another of pistachio.
Speaking of eating [since I posted a #food-fight complaint recently], he polished off some chicken and spinach with a dose of noodles and rice today.
Although he’s had quite a bit to eat already, he seems to have forgotten. He’s looking for more.
Burt’s morning cereal mush is a very high fiber and calorie Kelloggs Cracklin Oats that I mix with protein powder and a rich juice like Naked’s Blue Machine. This week I added the 350 calorie Bolthouse Farms drink.
It tastes good as it should but I aim for calories. His day is kick started this way and it makes me feel more confident about his diet.
BTW, my white jeans stayed clean through all our meals today.
I wear my grief on my sleeve like
A badge on a soccer uniform
I hope that the love is a second
Patch also obvious, also on my
Sleeve. Love and grief commingle,
Intertwined, intermingled, linked
In tears and smiles, in the joy of
Having you still with me. I see the
Glimmers of who you always were.
I mourn losing all the rest. I know
You struggle to find yourself. I
Struggle to find you, too. I want
You whole, healthy, and strong.
This is the final poem of a triumvirate of grieving. It is all the sorrow I can hold for now. [The other two are included here and here.] I am aware that there is a significance in these being written at Yom Kippur. [The last note is said as a secularist and an atheist.]
It’s never one-and-done with Burt of course.
He’s returning to the not willing to eat phase.
His dinners are mostly pureed in an attempt to ensure they go down smoothly. Sometimes it works, sometimes he needs to get sweets to fill him up.
Desserts tempt him. He ate half a pineapple cake* with his aide the other day.
[*Starbucks: please join me in petitioning them to keep it on the menu year round.]
I got him to eat nearly half a rainbow cake when I got home.
Real food remains the challenge. A challenge he and I will rise to conquer! Once we get past “never give me mashed potatoes again.”
I have been doing my share
Of grieving lately. I say share
As if it were an apportioned
Amount. A pinch of salt, dash
Of cardamon. Measure your
Grief in a beaker, a basket, by
The pound or a bushel. I do
Not even know what a bushel
Is. There's the song, "I love you
A bushel and a peck," it adds
"A hug around the neck." So
Sweet. We saw Oklahoma four
Times when it played Broadway
In 2002. At least 4. Burt never
Did anything but all out. I am
Grieving that. The shows we
Saw; the ones we never will see.
The memories I hold and share
For both of us, because he does
Not. I am losing who he is; he is
Too. He's not always sure who
I am; in the night, he calls out
Hello, it's Burt. He has to identify
Himself, maybe as proof of who.
I am grieving and it just might be
More than my share. It's his share
As well. By the bushel or the gallon
Or the gas tank. Please fill 'er up.
Let me grieve to identify myself
As the one who loves, who misses.
It was, well still is, a beautiful
Day, full of autumn's promise,
Crisp with expectation. I am
Sorry you missed it, my love.
Staying inside, sluggish with
Your special imaginings and
Disconnected from seasons
As they pass. I so want you
Present and here with me in
The warm of fall as it begins
To cool. It's a season I have
Always enjoyed most of all.
In years past I spent it with
You. Then we cherished the
Transition this time of year
Made. It took us from the
Summer's heat, letting us
Adjust to the coming cold.
It is so beautiful in the fall.
I am sorry you missed it, my
Love.
this is our life