Lynn’e Covid-19 Vaccination

caregiving

Aegis staff and residents are scheduled to receive their 1st Covid-19 vaccination Thursday, 1/14/21 from 11 am to 5 pm. I have signed her vaccination authorization. Their second shot must be delivered within 21-28 days after their first one.

Hallelujah!

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.

Maybe It’s Alzheimer’s

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Aegis reviews Lynne’s behavioral symptoms quarterly. Her sleep patterns were disturbed by the switch to standard time and the increase in nighttime. The medical director prescribed medications for longer and more regular sleep.

Lynne repeats herself, called looping, about every 30 seconds when she initiates conversations. She waits outside the care director’s office for her to come back rather than sit with other people. They’ve had another COVID case on her floor, so she’s in lockdown again.  She often calls me to say it’s difficult.

I said recently, “Well of course it’s hard honey, you have a disease, Alzheimer’s.”

She said, “I do?  Maybe that’s what it is.”  

Now I use short sentences to tell her stories of current events, even the election, or long-term memories of her boys, her mom, her friends. If we meet in Outdoor Living, I’ll bring her a vanilla milkshake from Dick’s Burger’s. She thanks me, listens, comments appropriately, and searches for words to add something. She’s very pleasant most of the time. When her mind wanders after 20 minutes, I ask her if it’s time to go.

She says yes, and adds, “Thanks, Dad.”

Laughing and Caregiving

Fun activites Alzhemier’s

Lynne & Keith

Lynne can still laugh, even at my jokes. “Lynne, everybody loves you. Everybody — well, maybe your little sister didn’t like you for a while.”
“Lynne, you don’t have to wear a mask over your mouth while we’re on a video chat with me. I don’t have Covid.”
Lynne liked a new headband Edith gave her. I thought Edith made them and called her, but she purchased six different headbands for delivery to me. I’m giving them to Lynne one at a time. I reminded her she was wearing one from Edith. She laughed. “That’s Edith.”
Henrik and I bought her a pumpkin and Honeycrisp apples. She wants the pumpkin to have a smiley face. She likes fresh Honeycrisp apples, so I cut one into small bites for her. She ate them while we video chatted. She had to leave the chat to wash her sticky hands. I didn’t tell her Henrik and I picked them fresh on our annual trip to Bellwood Farms in Bellingham with Keith’s family.
She called one day and said, “Okay, I’m not going to cry.”
We turned on her echo to play Lyle Lovett and she got on her bike to pedal. She said that was better.
I’ve added treats to Lynne’s daily Starbucks and trail mix. Friends and family send me books and I deliver them one at a time, because we have not been able to confirm she gets books sent to her address. She had Where the Lost Wander by Amy Harmon when Keith visited through plexiglass. She can read pictures better than words now. Edith delivered one, titled: This Book Is Literally Just Pictures of Cute Animals That Will Make You Feel Better, edited by Smith Street Books. She laughed and shook her head, “That’s, Edith.”
I give Lynne copies of photographs of her boys and family. She says, “I just want to be with my boys more.”
Luna, the Director of Caregiving, has fun with her. She said, “Lynne was sitting outside my door one day. I said come on in. She laughs a lot. One day Lynne told me she was done working for the day and was ready to go home. She is the number one resident caregiver at Aegis.”
Of course, Luna and caregivers are having fun with her. That’s who she is. I loved her hearty laugh when we ate, sat, read, hugged, talked, celebrated, kicked a pink soccer ball, walked the neighborhood, or arboretum, or waterfront on Lake Washington.
And I know caregivers are solving problems. Lynne ended another chat with, “Dad, I have to go now because I’m having a problem with my bra.”
Luna told me she’s pulling her bra down around her waist. It makes her extremely uncomfortable, so Luna ordered two camisoles.
Luna also alerted me that Lynne cycled through a conversation last week — eight to ten times in a few minutes. She’s started picking at her food.
I tell myself it’s fair for Aegis caregivers to have most of the fun because they’re caring for her the most. I tell myself that when I miss her the most.

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.      

Lynne Takes One for the Team

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Lynne Freed to Exercise with Weights

Lynne summoned the courage to suffer one for the team to contain the COVID virus.

Thursday she dressed up to return to exercising in the Aegis gym with weights. She’s walked city streets every day, as much as twice a day from what I hear. Her high-tech friends have called me with reports from their chats, such as Lynne misses her sister. Her boys dropped in for video chats on their Facebook portals since they now have their own Portals. Connections are not without glitches because staff leave before making sure Lynne is set up in a chair in front of the Portal with a lamp on so we can see her face. We’ll improve on that.

Saturday Lynne and a caregiver connected with me. She said, “I’m not sure I can take this.”

“Of course, it’s hard. But remember you don’t have to stay in your room now. You can walk your floor. You can go outside to the patio.”

“Can I go down to the concierge?  Some of these people …” 

“No, because your floor still has a COVID lockdown from the rest of the facility.  Aegis is protecting the other residents from infections from your residents and protecting the very frail people on your floor. You’ve got to protect other people.  You’ve got to take one for the team right now.”

She took a deep breath. “OK, I can do that.”

“Let’s call your sister. She’s having a tough time with hazardous smoke from wildfires that kicked up an asthma attack.”

We added Pam to the call. I said I had to go and let my daughters chat.  

COVID-19 Precautions Make Life Harder

Echo dot the only ink Wednesday

Aegis living reported COVID-19 invaded Lynne’ secure memory care floor. They are “managing four cases of Covid-19. Three of the residents are completely asymptomatic. One is showing mild symptoms and is recovering nicely. We have placed the four residents who tested positive under full droplet precaution,” [which requires the residents isolate in a room and everyone in the room wears a mask and PPE].
“Dedicated staff care for only those four residents. All caregivers who work in that comfort care unit only work in that unit.” Three caregivers were also infected and are quarantined at home.

I believe this partially explains her anxiety and inability to handle the video chats we tried yesterday. I dropped in on Lynne on her Echo dot which doesn’t allow me to see her.
Her first words were, “Dad, I’m not in my room. I’m supposed to be in my room.” I assured she was and phoned her Facebook Portal. It rang and rang.
“Answer it honey.”
“I’m afraid to touch it.”
“You can’t hurt it. Go ahead.”
“I guess I’m not doing it right.”
“Keep trying.” It didn’t connect. We talked briefly. Her flip flops are comfortable. They’re fancy. Pause …
“I’m afraid I’m going to be in trouble. I have to go.” She walked away.
My frustration skyrocketed. Why can’t she press the face of the Portal? She has before. It’s infuriating to be unable to visualize what she doing and give basic help like using her finger to touch the Portal.
Then I remembererd she was anxious, believing she wasn’t in her room and had to get back to it. She can’t be losing all her mental capabilities this rapidly. Or is she? I get torn by two impulses: the shorter her end stage, the better – get her suffering over; and, we must make her better now, somehow. It feels like it’s getting harder daily. Nothing works for very long. And nothing works when I can’t understand what is happening, when I can’t sit beside her.
After a while I dropped in again. She was there and seemed more cheerful.
I asked if she wanted a video chat. She paused.
“No, I better not. I got too anxious.”