Losing Precious Months

Shared from the Seattle Times by Paige Cornwell

Jim Russell is reflected in a plexiglass shield as he chats with his daughter Lynne Russell, at the Aegis home in Seattle where she lives. Lynne, 55, has early-onset Alzheimer’s. (Ellen M. Banner / The Seattle Times)

Lynne and I are mentioned in this article in the the Seattle Times.

Social isolation is difficult for anyone, but advocates say that for residents with Alzheimer’s or dementia, a lack of visits and decrease in mental stimulation can accelerate cognitive decline that in some cases may be irreversible.

https://www.seattletimes.com/seattle-news/health/losing-precious-months-what-isolation-and-lack-of-touch-mean-for-washington-residents-with-dementia-and-their-families/

This is what I wrote Paige Cornwell about the article. “What a great story of the isolation and loss of caregiving available for residents. I want to add information that I had not given you. Lynne was a special education teacher also before she had to retire. And Aegis Madison has now granted me essential caregiver status to  visit Lynne twice a week, even being able to take her for a ride in my car.

That picture of us by Ellen is incredible (actually there are three pictures linked on the website). Thanks again for all you’re doing to educate people.

Never Run Out of Smiles

caregiving

Thin smile with a warm wrap

Lynne called. You said I’d like this place
I do. Activities, care, safe. Staff love you. You’ve got a hard job to walk — can’t remember, find words, figure things out. You’ve got to fight through it. You’re strong. You can do it. Where’s your smile? Everybody..
always loved your smile. You used it all the time. I was afraid you’d run out of smiles. I checked, though. You can never run out of smiles. Go give ‘em one of your smiles.
Slight chuckle. You always make me feel better. OK.
She stood up in a warm shawl, hair neatly parted, framing her face with a thin smile and walked out.

I can make her feel better, for a while. I can’t make her think better, ever. Nobody else can either, for a while.

Poems Are Not Hallucinations

Short Stories

Lynne and Dad looking at her Book of poems, 180 More by Billy Collins

Lynne is scared by hearing a man’s voice repeating, “Something is rotten ….”
After a caregiver and I calmed her down, he showed her a book of poems, 180 More by Billy Collins.
Lynne said, I love that book.
I think she is rememberng lines from Billy Collins’ peoms.

Lynne has told me and several others that she is scared by a man’s voice. Luna, the care director mentioned it several times, so they have called for a psychiatric visit with her. [I hope Lynne doesn’t think he’s the man behind the voice].

She told friend Nancy, “A man keeps saying, ‘You are loved.’ But nobody believes me.”

Nancy calmed her down, “I believe you saw something that seemed like a man in your apartment.”

That would be spooky. Interestingly though, she never sees a man, only hears the voice. Friend Donna emailed me about a video chat because Lynne was upset. It seemed like Lynne had a hallucination about someone being in her room offering her M&M’s. [note: I drop off trail mix with M&Ms every morning and staff delivers them to her].

Lynne is losing cognition steadily now. Sentences are shorter, she often can’t complete them, and she repeats herself. Neverethess, she can chat even though she may mix up memories [I do that too]. The last call about the man’s voice might have alerted us to the source of the voice. A Caregiver called me because Lynne was upset by a man’s voice that repeated, Something is rotten….
I said, Something is rotten in Denmark
How did you know that, he asked?
It’s a famous saying.
The caregiver picked up one of her books to distract her, 180 more: Extraordinary Poems for Every Day, by Billy Collins.

Lynne said, I love that book.

I said, “Lynne you’re hearing Billy Collins voice saying poetry to you. But actually it’s your memory repeating his poems. Your memory is working.”

I emphasized the poems are uplifting. So when his poem says, “You are loved,” he is affirming she is lovable. She doesnt’ have to worry about that voice. It’s her memory working well. I’ve restated it two or three times. I told Luna we found the man. She laughed, “We’re a team.”
We’ll see if that helps. At least it’s a nice way to comfort her and read her another poem. I ordered the book for me to read poems to her. And we’ll if the pyschiatric visit confirms it’s mostly her memory for poems.

Each day brings new puzzles to answer to solve to give us a little hope for a little while.

Lynne’s 55th Birthday Party

Fun activities

We celebrated at a party, a two-day Zoom party for Lynne’s 55th birthday. It was coordinated by her friend Nancy with participation from over 25 Aegis staff, family and friends of Lynne over the last 50 years.

They sent gifts to me, which I delivered and photographs to Nancy, who shared them on Zoom. Nancy collected titles of Lynne’s favorite songs and artists for dancing and singing with her, including a Congo line. We’ll create a new Alexa playlist for singing and dancing in her apartment. Aegis reserved a conference room for an hour each day and decorated it for a party. Caregivers sat by her side. She opened presents and ate cake.

The room had a massive TV screen so Lynne could identify individuals in the Zoom matrix as they shared how much Lynne meant to them as a friend, and often gratitude for her role in their careers and marriages. We saw her face light up over and over. We shared lots of laughter and dabbed at tears.

This celebration blessed me with gifts. I am blessed she welcomes me as her dad. My respect for her grows and grows, even bordering on awe, when I hear who she is as a sister, wife, mother, recruiter, teacher, lover, friend, and most rewarding for me, a daughter. At times like these, I am grateful for what she means to people, many of whom know her better than I do. Which makes me profoundly grateful for this community of caregivers. We are a community who care for her and for each other.

I couldn’t live up to her expectations if I had to care for her alone.

Lynne Promotes Female Firebrands

Nancy a friend of my daughter Lynne, sent me the book Female Firebrands by Mikaela Kiner, CEO of reverbpeople.com, and a Microsoft alumnus like Lynne and Nancy. Luna, the Care Director estimated Lynne showed her the book 20 times to open and read a paragraph. The subtitle is Stories and Techniques to Ignite Change, Take Control, and Succeed in the workplace. Lynne seems to doing that in her memory care unit. Thanks, Nancy and Mikaela Kiner

Fun Activities

Join Lynne’s Birthday Party

Fun activities

Lynne with Family last Mother’s Day

“What are we going to do for Lynne’s birthday,” asked Nancy, a friend of Lynne’s?

I hadn’t thought about her fifty-fifth birthday. Last December Nancy and friends invited me to a memorable party for her. Nancy organizes Zoom conferences with up to 150 people, so she quickly proposed a Zoom-party on December 12th. Soon Lynne excitedly added more friends on her Facebook page before I’d included relatives. I worry I missed people she knows.

Staff at Aegis are enthusiastic about the idea.

The marketing director wrote, “I think we’ll do whatever we can to make this work for Lynne!”

The activities director wrote, “Saturday, December 12th will be one great birthday!”

He attached his photo of Lynne celebrating her last Mother’s Day party and said this birthday party will be even better. Aegis recommends we not overwhelm Lynne or their staff by scheduling an hour on her birthday and and an hour the day before or after.

Nancy and friends are generating ideas. People could log in to Zoom and stay online for a while. If they send Nancy photos, she could post them. I could stage times for people to join in small groups. Nancy could set it up so only one person is talking to Lynne at a time. We’ve asked if Aegis could find a large screen in a “public” room where residents and staff could join, and where Nancy could add music from her computer so Lynne could dance at her party.  

Mark your calendars to join Lynne’s amazing group of friends and stay in touch for final details if we can make this happen.

KOMONews on Lynne and Dad

This is the KOMONews report on Lynne’s and my story regarding the Alzheimer’s walk. https://komonews.com/news/consumer/dont-underestimate-covids-effect-on-people-with-dementia. I’ll be at Aegis-Madison if any of you want to join me Saturday, October 3 beginning at 8:45 am. You can see me and Connie Thompson of KOMONews at the virtual walk sites because she also has an Alzheimer’s story. Links are on the Alzheimer’s website for Seattle.

Finding Support in Hard Spots

Caregiver support

Stu Ervay blogs about giving home care for his wife of 58 years during her final stage of Alzheimer’s (https://stuervay.com/2020/09/16/relationships/).
He’s kept himself in good health mentally and physically. She’s nearby pleasantly busying herself while he pursues his interests and converses with family and friends.
I envied him recently when I couldn’t help Lynne in her secure comfort apartment in her final stage of Alzheimer’s. A thoughtful caregiver had set up a video chat with Lynne while she pedaled on her stationary bike in a huggable fuzzy pink salmon sweater. She got hot quickly and tucked her chin inside her sweater to blow air down her chest to cool off. She gave up and left her apartment. I stared at an empty bike seat. I ached to hand her a t-shirt and guide her to the bathroom to change into it. Stu could have put his arm around his wife and eased her into a cooler shirt and diverted her to a new activity.
Yet Stu misses the female half of their “worldview that amalgamated the spiritual and rational … way that … needs real life context.” He posted this question as a married man caring for his wife: “What do you do to fill the emotional places in your brain or heart when your wife in no longer communicative or even aware of your presence?”
I feel that void as a widower even though I’m blessed to communicate with many women: care supervisors, trainers, counselors, activities directors, marketing representatives, caregivers, nurses. They get the advantage of being with her when she is cheerfully busying herself around her secure memory care floor.
And I talk with her girlfriends who tell me they have heartwarming chats with her about their shared memories. All of them encourage and comfort me like times I can’t be by her side and I can’t talk with my wife.
Those women help me, as they did Monday when I dealt with the first anniversary of Karen’s death. I prayed fitfully, skipped meditation, set lots of writing goals, delivered Lynne’ daily Starbuck’s iced coffee and Mountain Trail Mix. I bought a bouquet of tiny roses and put them in a vase on the kitchen counter like I spontaneously did with Karen. I shared a photo with my kids. After that I watched tennis in Hamburg and the men’s and women’s finals in Rome. My daughter Pam called for a long chat and recommended watching repeats of the Tour de France. I watched episode 20. My wife’s sister called. I grazed several meals. A realtor called to send me paperwork to sell an asset at full price. His voice sounded disappointed at my mechanical reaction. I watched Monday night football. At 7:00 pm I rejoined an Alzheimer’s YOA support group of men and women on Zoom after a two-years’ absence. They welcomed me back as I poured it all out. I watched comics on YouTube videos. I finally slept feeling I had coped well, despite getting nothing done on my to-do list.
More than I had admitted before yesterday, I share Stu’s yearning for his wife, “the other half of me for over half a century.” And I’m thankful, even though every Alzheimer’s caregiver’s journey is solo, there’s lots of support.

A Bumpy Ride with Alzheimer’s Caregiving

Fun activities caregiving

Aegis reduced its quarantine restrictions allowing caregivers to accompany Lynne on walks as many as three times per day. She’s active, so the floor supervisor gave her a fourth walk one day. Our family ordered a stationary bike for her room, where riding it would lift her spirits during Seattle’s oncoming cold, rainy weather and future lockdowns. She and staff were happy when I printed a picture for them. That picture lifted my spirits before it arrived.
I scheduled an Outdoor living room visit where we could talk through plexiglass shields. I showed her a heartwarming video of a Labrador mother using her paw to protect her last puppy from being adopted.
Lynne’s vision has declined so she used her finger to focus on it. “What is it? Is it mine? Is it a puppy? Is it mine?”
“No, it’s just a funny video.” I wondered if she thought it was her dog.
She stood up, disappointment draining the smile off her face. “It’s not mine?” She started to sob. She had said she wanted a dog earlier that month, but we had told her that wasn’t possible.
“Honey you can’t have a dog up on your floor.”
She sobbed as she stared at me and backed in and out of the curtains twice, sobbing harder. She staggered toward the front door and hit the windows again as she backed away from me. I stood up wondering what I could do.
A caregiver came out quickly to comfort her as she guided her back inside. I told them it was about a puppy.
I was sad and miserable. How could I have forgotten she wanted a dog?
Very soon I got a text message. They had redirected her to the picture of the bike. “She’s fine now.”
I was too. Caregiving is a long, bumpy ride.

Deciding to be a Hopeful Caregiver

video chats fun activities

Lynne called me to video chat because she was bored. Her caregiver was standing by.

”I’ll be back in a little while to see what you want to watch on TV.”

That was encouraging to know. I suggested we dance to music from her Alexa dot. She liked that idea. Then a resident slowly walked behind Lynne to sort through Lynne’s bedding. Lynne turned around to see her. She said hello and called her by name, “What are you doing here?”

She silently continued browsing. I suggested Lynne help her leave the room. Instead of walking over to guide her out, Lynne walked out of the Portal camera view toward her door. Meanwhile her friend continued sorting through the bedding until she found two books. She lifted them up to eye level with one hand and shuffled away toward the door. I heard no sound. I waited and hung up.

I felt helpless. I couldn’t help her help another resident. I couldn’t help her protect her books. I couldn’t talk with her. I couldn’t help her dance.

I decided to believe in hope. Lynne was no longer bored. And she was helping a resident; and she found her caregiver to help her; and they convinced the bargain hunter to return Lynne’s books; and Lynne could browse through other residents rooms to replace her books; and by this time she was watching her favorite TV show; and we’ll dance another time.

I also decided we need to keep sending her paperbacks because we’re stocking Lynne’s whole floor.

At least I cared for me as her caregiver under Lynne’s COVID-19 quarantine.