We’re So Blessed

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A Caregiver Reading Lynne’s Poem

Lynne joined me for our visit in a private room. She wore black and gray cotton sweaters, summer red and yellow capri pants and flip flops on bare feet. We had 11 inches of snow outside her window. She said, “There was so much snow. … You couldn’t go.”
I had decided to amicably encourage her by quietly listening to every word, if she was in a good mood. I want to know her thoughts when she spends hours alone, or absorbed in thought around other people, and when staff doesn’t need to call me because she’s anxious.
Quiet smiles amid slurps of our strawberry and vanilla milkshakes.
“They’re going to get someone new. … Not yet.”
She looks at the floor. “We had it all. We have family. We’re together.”
I nodded, “We are.”
She squeezed her hands. “And they’re so good. … We’re so lucky. … We’re so blessed.”
She sat back. “That’s why they say, ‘I’m uppity’…. Because we have it all.”
We opened her 55th birthday album of family photographs. She paged through it, stopping with a laugh and a point. “They were so little. … I loved that shirt.”
She’d follow a thought in silence until she noticed the album and flipped another page. “There she is.”
I read her the poem, I’m From Mom, which she wrote for Karen on Mother’s Day in our fiftieth year of marriage. She laughed, repeating phrases.
After half-an-hour, she leaned forward. “I think I should probably get back. I don ‘t want to overstay. Or they’ll think I’m uppity.”
We showed her poem to the concierge, who read it along with her. “It sounds like Mary Oliver,” he said.
He made a copy for the Activities Director, who promised he’d read it in poetry class the next day.
I slipped out.

Visits and Guilt

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Lynne’s three boys, mostly men now, over 18 and 6’ 3” tall who wrap me in their arms, visit Lynne an hour every Thursday when they are together between fulltime schooling and work. Lynne squeals with joy when they sit down in the outdoor living room at Aegis.
They share and laugh for an hour over memories and current stories. Rides on her scooters. Scary rides at theme parks that stopped at the top. Cars they liked to drive or were afraid to drive. Lynne burning up her Mom’s car engine in high school. Lynne pumping up her ballplayers by urging them to visualize themselves making a great play.
It worked, one said.
The older twins describe a neighborhood playmate who towers over them now. One remembered the playmate’s mom, a friend of Lynne’s, would criticize him as if he was her kid. Lynne telling them to write down goals. They never did it but they agreed research shows it works better if you write them.
Agreeing, You could talk to her about anything, everything.
It’s taken a long time for me to get her brotherhood into a regular schedule on topics they would enjoy. At first irregular visits were awkward with uncomfortable silences. I reminded them dementia wipes out short term memory and language skills first, leaving her able to recall long-term memories. Plus, she is interested in whatever interests them. They keep her animated. They look forward to it, arriving early the last two visits.
I worry they will forget. I remind them. I worry the boys will feel guilty they didn’t visit more, like I feel guilty about my mom when she had Alzheimer’s. I worry once a week is not enough. Lynne said recently, They don’t have to do that. They’re so busy.
The whole family worried as the boys’ school performances deteriorated during their shock over her diagnosis. The twins left college to come back together to support each other to support her.
She frequently remembers them when people ask her about them, they are all doing exceptionally well. Now she falters to find words to name them even as she shakes her smiling face in bliss.
I worry I should do more. I should visit outside more. I should call her on video chat more. She rarely answers because staff says she stays in the shared living area. I reason if she’s not calling me, she’s happy with some other activity. I hear her ringtone on my cell which usually means she or staff want me to cheer her up. Sometimes I ignore it because I can’t find the courage to help her. I feel guilty. I tell myself about all my other responsibilities as a widower, writer, investor, father, grandfather, and sharing her story with friends. I have to exercise and stay active for my mental healh.
But I still feel guilty when I remember I visited Mom less and less as her awareness drained out of her. I might have done more.
For now her boys love their visits, and are busy doing well, which is Lynne’s ever accessible joy. And if they feel guilty in the future, I hope they can forgive themselves. I can ususally forgive myself, but there is always the residue of doubt about what I might have done.

Getting Help to Relive Memories

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With riends at a Lyle Lovet concert

People in late stages of dementia can relive memories wrapped in their five senses and heartwarming emotions. Those are the best times for Lynne and me now. I’d like to learn more ways caregivers can help loved ones relive those memories.
Recently, she was snug in the front seat of my car listening to Neal Diamond music and singing his lyrics as we drove through a rainy night. She looked out the window at parks and restaurants in her Madrona, Leschi and Capital Hill neighborhoods, interrupting her singing to briefly comment on the scenes. On a video chat she listened to me read every word of Sharon Olds’ poem, First Hour. It’s about a newborn’s thoughts. I told her that and when I finished she immediately remembered holding each of her three newborn boys.
I, we caregivers, want ideas to reach deep into more of those memories so we can relive them in restricted, confusing, anxious times.
I have read recommendations about how to assist Lynne’s behaviors when I’m with her. She opened a back door of the car to sit on the lowered seat, but said she couldn’t get her legs in. I guided her into the passenger seat. She quickly tangled her neck in the seatbelt until I clicked it in for her.
I’d like more training on drawing out the deep memories, especially when I can only care for her on a video chat or sitting alone with her, even then unable to touch her without gloves and a shield, let alone hug her. What senses and emotions help draw out pleasant memories? In the car, did feeling snug in her passenger seat relieve her anxiety and let her focus on the scenery? Was it the music? The lyrics? Me by her side? With the poem, did it help to feel secure in her favorite chair? Me introducing the poem by talking about newborns and mothers? Dad’s familiar voice? The flow of the lyrics?
I search for connections to memories by watching, listening, asking and showing her pictures to see what settings, words, images and names excite her senses and emotional experiences. I need help. And I confess I feel pressure because her reservoir of memories is draining away rapidly.
Can I get help from our worlds of virtual reality? Lynne had a fabulous time with friends at a Lyle Lovett concert two years ago. Could she wear virtual reality goggles and earphones to sing and dance with fans and friends at concerts like Madonna? Could she dance in sock hops on reruns of The Dick Clark Show? Could gaming programmers develop videos for people with dementia where they could hug avatars instead of zap them? Could exercise equipment manufacturers mimic virtual scenery while residents exercise on stationary bikes? Could we collect videos from family and friends to rerun in endless loops like TikTok videos? Could we download YouTube videos?
There must be people who could recommend more ways to raise up Lynne’s memories for us to enjoy in the present Covid restrictions — experts for caregivers, architects for room and building designs, owners of assisted living facilities with lively experiences from households or neighborhoods.
Please help.

First Times With Her Boys

Video Chat Fun

Lynne’s boys fully clothed

Lynne & a caregiver called last night.
I said, Do you want to hear a poem? I have Billy Collins book, 180 More. It’s First Hour, by Sharon Olds.
Yes

It’s about a newborn’s first hour before being taken to mother.
I read it. She listened. Do you remember when they laid your twins on you?
She rose into a smile. Oh yeah.
Skin on skin?
Yes
Did you hold them in each arm?
No, I kept them separate
Do you remember Christoph?

Oh yes. I worried about him
Why?
The Girls.

Soon she said, Well I guess I’d better go now
Ok, well I have more poems. 179 more, so call any time
OK, Dad

Sharon Olds is the author of 12 books of poetry for which she has won the Pulitzer Prize and England’s T. S. Eliot prize.  https://www.sharonolds.net/biography

Never Run Out of Smiles

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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.

Lynne’s Birthday Gift

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Cat, Blue, Jane & Lynne in Denver

Lynne and I wanted to give Aunt Jane a birthday present on her 82nd birthday. She is my sister and Lynne’s cherished Aunt who had the courage to throw off society’s expectations of housewives, and serve the under privileged. She lobbied for compassionate legislation for children with handicaps in Colorado, lived with children in impoverished orphanages in Mexico, counseled Guatemalan refugees who fled the genocides in Guatemala until she returned with them broker peaceful returns to distrusting survivors. Along with those missions, she inspired her entire family to reunite and embrace her independence.
I gave Lynne the phone so she could sing happy birthday to her while I shouted it through the plexiglass in the Aegis Outdoor Living Room. Then Lynne had a private conversation with her.
Jane is a talker. Lynne is a listener. She focused on every word. I heard Lynne’s responses: “Oh, yeah.” I’m not sure.” “Well, I have a lot of friends here.” “It is what it is.” “I can see family.” “I get out and do things.” “I’m never sure.” “They have us do things, you know.”
Suddenly Lynne said, “Oh, no!”
She put her hand over the phone and said to me, “Cat broke her toe.”
Cat is Lynne’s cousin, a nurse. I asked, “Is she still working?”
“Oh yes.”
Finally, she tired and handed the phone back to me.
Jane said, “We had a great conversation. She’s handling it so well, accepting what is.”
And that inspiration was another gift Lynne gave Aunt Jane. And me. And everyone.

Playing Hardball to Get Through This

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Lynne called last night at 10 pm, melancholy without tears. “Not sure if I can do this.”“Sure, you can. Your Grammy Helen did it. Once you get through this part, you’ll be happy. Grammy Helen was happy.”
“Yes, she was.”
Pam had phoned me about her video chat with Lynne when her boys joined in. We reminisced about Pam’s plight inhaling wildfire smoke in California. I asked her about the boys. “They’re doing fantastic,” she said.
I told her I caught an overthrown hardball at Miller Park with my bare left hand and tossed it back. The young men on the teams cheered. “You the man.” One ran over with the ball, “Sign this.”
I didn’t have a pen, so I bumped his ball with my fist. I told Lynne, “If I’d had a pen, I could have signed it as Dan Wilson. And the next time I saw him, I’d have to tell him his legend grew at Miller Park.”
She laughed. “He’d have given it to you.”
We paused. She took a deep breath, “I’m not sure I can do this.”
“Sure you can. Your first job is get some sleep.”
“I can do that.”
She headed for bed in her clothes. “You should turn off the light.”
She looked for it on the blank wall next to her shelves. “Lindy, I think the switch is by the door.”
“Oh yea.” She walked away from the Facebook Portal screen and I saw the bathroom light turn on and off. She walked back to her bed and climbed in.
I called out, “Good night.”
“Good night.”
I called the concierge who promised to have someone help her get some sleep.

As Good As It Gets for Dad

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I interviewed Candy, a friend of Lynne’s about their time together at the Bill and Melinda Gates Foundation in 1996. I am grateful for her memories full of Lynne’s fun and professional skills. I sent her an image of an article about recruiting talent for the Bill and Melinda Gates Foundation published in the Seattle Times on October 17, 1996 Titled, “Want to Work for Gates?” The front page was in a 11 x 17 picture frame with a photograph of recent hires when the foundation was rapidly expanding from an influx of donations. The frame was given to Lynne when she retired from the foundation to work as a special education teacher. The back of the frame was filled with farewells and signatures of her fellow workers.

Candy asked how to contact Lynne for a video chat. Lynne’s phone messages show Candy called later that afternoon at 1:27, 1:28, 1:35 and 1:35. Lynne  missed each of those calls. Candy’s persistent. She called the next day at 3:06 pm and missed  her, and finally connected at 4:02 pm for a 23 minute and 50 second phone call.

Candy sent me this email, which is how I discovered she’d dedicated herself to connect with Lynne while she still remembers:

“I talked to Lynne via video chat today.  It was so great.  She remembered me well and was really present and we reminisced about old times. I’ll call her once a week and told her she can call me at any time.

Once they open on the CV19 restrictions, I’ll do walks with her and go visit.

Thank you, thank you for this re-connection.  In gratitude, Candy.”

As Lynne’s dad, I’m unable to resurrect those intimate stories that still exist in the great majority of Lynne’s long term memory. I’m thrilled she can share good times in normal conversations with friends. I thanked Candy for her persistence I replied, “That’s as good as it gets for me right now. Thanks for letting me know.”

I asked it I could share this and she said, “Happy for you to do so.”

A Normal Video Chat in an Oasis

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A caregiver and Lynne called Sunday night for no reason other than to video chat. No tears, no fears. Almost normal. 

I told her I had a scan scheduled for Tuesday and had to avoid chocolates for 24 hours beforehand, so I was going to have chocolate cake for breakfast. She laughed.

I asked if she was eating lunch in her bedroom or with other residents. She didn’t know. “I haven’t paid attention to that. They have places on the floor and the tables, so we’ll be safe.” 

She had the new book in her hands from her sister Pam. She took the flyleaf off and scanned it and scanned the book, hesitating as she read each word in the title. “I’m excited about it.

Ok, remember when you get a new book you have to return one for me. Return Bear Town because I hadn’t read it yet.”

The caregiver was still there so he looked for it in her shelves. She said, “No, it’s not there,”

She tugged back her blanket and sheet to rummaged through them until she found a couple of books and found it. She gave it to the caregiver to leave with the concierge.

We chatted for 18 minutes. I updated her on Pam suffering in wildfire smoke, her niece liking her visit to Lynne’s alma mater Oregon, and on an on. She responded with understanding to each one.  When I paused wondering what to say, she said, “Well, I should go.”

We told each other we loved each other.

Those oases of normalcy are normal with Alzheimer’s. They are abnormally wonderful to experience and share. And I believe her cognitive clarity was also helped by the major reduction in COVID inactive isolation.  She’s escorted outside daily, exercising regularly, walking her floor, helping fellow residents, getting video chats.

Whatever, we persist and give thanks for each oasis.