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.
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.
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.
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.
It’s a quandary we face. The person we love and married is no longer the same. I miss him all the time.
Life with a p.w.d. is far from easy. Is this the right time to place him or her in a residential home?
A social worker once told me, “You will know when the time is right.”
I don’t think there is a time that’s right, only the time that’s right for you. I am choosing to keep Burt at home. With help, I believe I can do it.
Residential care may salvage a caregiver’s nerves; it may be the right thing at this right time.
The caregiving, the advocacy, the memories of better days, and the love continue at home or in a home.
Every person with Lewy Body Dementia, it is said, is different. So is every caregiver for that person.
Go with your gut. There is no wrong thing you can do.
It takes a village.
Hillary Clinton on bringing up children but applies as well to how society runs
Good neighbors.
They have provided continuing support for me.
My personal cavalry when, one day, Burt was so agitated about going out to the street that he rammed his walker against a wall. Down he went. A little mob of his friends and followers pulled him up.
Today, Burt crumpled by the mailbox. I was able to guide him down for a gentle landing. Our doorman and a neighbor I barely know past a nod picked him up.
The walker is not meant to be used as transport, but an emergency is an exception.
At our door, he felt too unsteady to get on his feet. I went down the hall to ask MK & LG for a hand.
And what a loving hand they gave us!
M scooped Burt up and kind of supported and walked-carried him to his bed.
Great neighbors are the best kind.
In trying to keep a positive attitude over our situation, I also try to find humor when I can.
This doesn’t mean that dementia is not a dreadful disease.
As it is Lewy Body Awareness Month, we need to stay aware of just how devastating LBD is.
All dementias occur as some necessary protein in effect begins to destroy the brain.
In Lewy, it’s the alpha synucleins that fold when they shouldn’t. They damage the neurons (as I understand it) and begin a process in which brain activities stop functioning.
I once read a novel in which the protagonist describes his heart attack as his body turning on him. Dementia is akin to that.
Lewy bodies act unpredictably. Our person with this dementia loses one function or another in no set order.
It is devastating.
While this process of effectively “losing” his/her mind is going on (and it’s ongoing), our loved one has some awareness.
The other night, Burt answered my question of “what’s missing” with a blithe “my brain.”
I had become accustomed to some version of this heart- breaking response when Burt was more aware of his diagnosis.
Then he used to call it “Benny Blue” and would explain, “It’s a brain disease.”
Lately, during his decline, he’s mercifully forgotten about old Benny. His response tore at me.
Burt’s awareness comes and goes, and there are times when he tells me that I must be losing my mind. I guess that projection suggests he is feeling his losses.
I know I am.
A year ago, I commemorated Oct, Lewy Body Awareness Month, by beginning this chronicle of our journey.
October marks 4 years since Burt was diagnosed. It is not a happy anniversary.
Nonetheless, I remain grateful that I can still enjoy him. We are having some rough times, but he is still my delight. I am grateful for those feelings as well.
We’re celebrating this LBD Awareness Month by joining the CaringKind walk (albeit virtually) on October 19th.
Your link to sponsor Burt & Tamara is here: https://give.caringkindnyc.org/fundraiser/5610000
I am also grateful to you.
A provider is giving me a hard time over my healthcare proxy. They’ve refused to discuss Burt’s plan of care until they vet my proxy.
This morning, while mulling my frustration, I thought oh come on. I have the marriage certificate.* That should be proof enough.
[*Side note: a beautiful copy of this docunent arrived in Friday’s mail.]
In further mulling, this time on my participation in my true love’s healthcare, I had to admit I did not interfere much before his illness.
As we gained mileage in our life together, I did go along to see doctors.
We had multiple appointments to try to chase the cause of Burt’s double vision. I accompanied to dentists.
In retrospect, I should have been more proactive on at least some occasions.
His PCP recommended Benadryl to help Burt with anxiety and sleep issues. I saw a red flag.
Waking from a nap after popping one, Burt seemed like a stroke victim; his speech was slurred, and he was confused.
I think I did mention my concern to his doctor. He pooh-pooed my worry; it takes the edge off, the medical professional said.
I think that Benadryl accelerated his Lewy Body if it didn’t actually cause it to happen.
We never pick the best time to overstep, do we?
Burt has times when he is sure I am one of “6 to 20” wives. Which one are you? Honestly – although I call this schizophrenia by proxy, – I am glad that, if he’s confused, he asks.
This query about who and which at 6 or 7 pm always puts me in a big panic. It usually signals a long chat (not unlike the one last night [see below]) but with much less likelihood of his falling asleep. At all. He just gets wound up!
When he doesn’t ask, I assume I am I and blithely interact as myself. I may, in fact, be “new girl.”
Often, his new girl interactions are very pleasant. He seems to crave novelty. [Ha.]
The only real danger in these cases of “mistaken identity” is that he will tell me, er her, that he hates his wife. The other pitfall is how very confusing this is for me.
Let me tell you how surprised I was that a 1am interaction that regarded who I might be was less jarring than expected.
Last night, I never said which wife I was. We went on to chat about schedules for the next 3 hours. At that point, I said we had to get to sleep.
And we did. No mention of how awful his wife was. Phew.
this is our life