We bought a pedometer to count Lynne’s steps listening to music, often arm in arm, inside or outside. We clipped one to her waistband with her cell phone in it. She walked 13,408 steps the first day, 18,635 after 24-hours. She welcomes arms. #Alzheimers #Alzwa #alzauthors
The hugging round with the boys comes late in the day after walking and hearing them talk about colleges, job options, gap years, old passports, Mother’s Day. Fatigue stirs Lynne to her feet for the hugging round. She looked good, they say. #Alzheimers #Alzwa # #alzauthors
Care giving Family
Shared from the Seattle Times by Paige Cornwell
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.
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.
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.
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.
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.
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
“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.