this is our life

What is slipping away

As Burt’s Lewy Body Dementia progresses

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.

Clean jean

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.

Love and grief

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.]

Food’s still an issue

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.”

Equivocal grief

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.

A poem

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.

Our outdoor weekend

This morning, Burt asked me what I was doing yesterday.

I said I was in the park with you. “I didn’t see you. Why didn’t you come say hello?”

It now occurs to me that Burt is antsy in the park when he doesn’t realize I am with him.

Funny

A friend was struck by a Burt response – asked to color, he said, “me and my friends discussed it and we don’t do that kind of work.”

She said, “That’s hilarious.” It is.

It brought me to the question, “Isn’t it strange that although he no longer has logic, he can still be intentionally funny?”

He makes jokes. He is aware that he’s funny and he loves making people laugh.

Got to get a hobby

What is your favorite hobby or pastime?

In the last post here, I had a chance to investigate “leisure activities” for Burt.

Mine are less nuanced. I used to love trying artsy craftsy things to do. I once made a beautifully resonating drum. I also potted a decidedly clunky piece of clay; I was aiming for lightness.

For the next several weeks, I will be taking an art therapy Friday. I found the first group time to be actually very rewarding. Art is a fraught activity for me.

Not in the way Burt “and his friends” found it to be not their kind of work, but with its own tricky history.

I look forward to emerging with a new sense of dexterity.

A job

Did I mention Burt’s desire to get a job? Actually, he’s been on a hunt for work for a while now.

In some cases, his “bad” wife was the impediment. [I wouldn’t join him at the job, and my doing that was a requirement for his getting it.]

Other times, he felt they were too demanding or bossy. Or he didn’t show up Monday morning.

I know he’s bored. I want to find things to occupy him.

I did put together activity boxes, but except for an attempt at having him color, I didn’t fulfill my plan.

Burt responded to my asking him to color a sign for our apartment number with “me and my friends discussed this; we don’t do that kind of work.”

My new plan: I created a box with Counting work. Another is labeled Ledgers. The pens and pencils he’s going to need are in the Color box. There is also a box with picture albums called the Memory box.

Last week, I pulled out all the books of love and appreciation I made for his birthdays over the past 4 years. I wanted him to look and get involved.

Boredom still seems the default mode, but there are glimmers of interest and hope.