Special Caregiving at Thanksgiving

Fun activities during Thanksgiving

Lynne and her friend the Thanksgiving Turkey

Aegis reported they kicked off the week before Thanksgiving with a little fun in memory care. The Health Service Director dressed up as a Turkey and spent some time with Lynne and other residents. Lynne’s the one on the left in the photo. 😊 Holiday decorations should keep up the spirits during the upcoming “Week of Thanksgiving.” Staff will deliver different types of deserts for the residents and visitors every day on the Outdoor Living.
Lynne has been active with weights, a hair cut and shampoo and outdoor walks. One day, she came back from her walk and entered the daily stand-up staff meeting. They were pleased to see her and gave her a chair.
Lynne’s still caring for staff. She saw a caregiver have an incident with a difficult resident and said to her, “You’re having a bad day.”
A nurse told me about another bad day for Lynne. A resident hit her in the chest, hard enough to have her chest looked at, but there wasn’t a visible injury. When she was shaken by another incident she witnessed, caregivers led her onto her bike. After she pedaled herself into recovery, they asked Alexa to play Madonna so they could dance with her until she felt safe and settled. Caregivers continuously resolve such disturbing behaviors.
We have a lot to be thankful for, including caregivers in tune with Lynne during the loneliness on holidays. Bless them.

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.

Maybe It’s Alzheimer’s

Fun activities

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.”

Lynne’s Birthday Gift

fun activities

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.

Sharing the Love

Video Chats Long term memories

Kris Kristofferson

Lynne called. She was quiet until saying, “She’s nice and I don’t want to commit and not follow through. I feel like I fit in. It took a while.”
I agreed she is nice (I had no idea who she was talking about). “But you always follow through. She helps you walk. You get a good sleep. You eat good food. You ride your bike. You listen to music. You always follow through.”
She agreed and I piled it on. “You always followed through in high school. I was writing from your journals and letters today. You didn’t want us to buy a house on a hill because it was too difficult to walk home from school. We bought the house anyway, and you bought a scooter you hid in your friend’s garage, so you could drive up. You, your friends, and your brother drove all over town. I never knew.”

She laughed. I added another story. “You felt the chemistry brewing with a causal boyfriend after talking with him throughout a ballgame on a date with a different boyfriend, followed by a month of eye contacts, chats in the hallways, teasing from girlfriends. Finally, one day he told you to call him if you wanted to see a ballgame with him and his brother. That was your chance to find out if he was serious. You said, “Call me if you want me to go with you.”
“You knew he didn’t know your number. You waited. You prayed. Finally, he called. You knew, you knew, he would be your first love.”
Lynne smiled. “Yep.”
I piled it on some more. “Your good friend on the yearbook staff told me you were the one who organized work, because she was such a flake you felt you had to keep her on track.”
Lynne laughed but objected. “She was not a flake. She did a lot for us in the yearbook. We worked on copy together.”

We paused. “OK, Dad. I’m ready for bed. I love you.“

She calls and I’m there for her. I can tap into her joy to let laughter flow over us and rinse away fear for a while. I’m learning more intimately about her and loving more deeply as I learn. I’m learning more sympathetically about me and healing more deeply as we share. Being there is a balm for the years I was away.
I am living the lyrics of Kris Kristofferson’s song, Loving Her Was Easier: “Coming close together with a feeling that I’ve never known before in my time. Wiping out the traces of the people and the places I have been. Dreaming is as easy as believing it is never gonna end. Loving her is easier than anything I’ll ever do again.”

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.

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.

Lynne’s Joy on Her Bike Ride

Fun activities

Lynne’s joyous on her first ride with her stationary bike. You can hear Dad cheering from her Facebook portal and the caregiver urging her on.
Special thanks to the concierge last night after I told her the bike had been assembled for use. She immediately went to the basement immediately and wheeled it up to Lynne’s room while the caregiver covered the concierge desk. Oh, joy!

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.  

Sharing a Scooter on Video Chat

Fun activities

This red scooter is identical to Lynne’s yellow scooter.

Lynne and I shared a scooter when she called for our nightly video chat to relieve her sundown syndrome under Covid-19 lockdown. Lynne’s friend, Leslie, sent me a photograph of a red scooter identical to a yellow one Lynne and her high school girl friends rode around Eugene Oregon. I found a way. I printed in color and pointed my cell phone camera to it instead of my face. It filled my screen. It filled Lynne’s Facebook Portal. She laughed as soon as she saw it. “There it is. We rode all over on that.” We chatted about how she didn’t tell us she bought it and hid it in a friend’s garage. I said, “That scares me to look at even now.” Thanks for the memories, Leslie.

A friend sent me a link and said he thinks the scooter is a Honda CT90. Thanks, Chuck.

Playing Hardball to Get Through This

Fun activities


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

Fun activities

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

Fun Activities

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

Fun Activities

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.  

A Care Team Shares How to Fight COVID Isolation

Short short Story

Lynne and I are fighting alongside caregivers for Lynne’s well being under the COVID-19 lockdowns. We succeed and celebrate at times.  We fail and despair at times. The extra heavy effort is taking its toll and still, I believe we will persist because we are listening, sharing and being patient with each other as we continue to make plans.

The main issue is how to care for Lynne when she spends lengthy, lonely hours in her room. She gets anxious and leaves her room and is admonished for leaving and is returned to her room.  She feels like she is trouble and they don’t like her. She gives herself pep talks and says, “I can do this.”

But few things occupy or empower her, leading to the spiral downward again and afraid to leave her room for help. She’ll call me in tears. “Why am I such a crybaby?”

Lynne’s new floor supervisor, Sally (not her real name), shared her experience. “I spoke with Lynne at length last night, while she soaked her feet, to reassure her she’s healthy and not to blame for anything.  I’ll be honest, it’s a conversation she and I have several times a day. It’s always a good talk, she’s always smiling and feels better afterwards, it just seems after some time alone she comes back to the same conclusion that she’s sick or a bad person. The best we can do is continue to reassure her and try to keep her occupied while in her room.”  

It’s hard to occupy her under lockdowns. She was a special education teacher and high-tech human resources specialist who talked with people to be sure they’re OK, but that impulse is completely stymied.

She and I call each other for video chats.  I tell funny stories, and sometimes get a laugh. I ask her about latest book, have Alexa play music, suggest we turn on the TV. We are frustrated because her wandering fingers turn her Facebook Portal on and off, pull echo dot plug out of the wall, turn off the TV, or turn off the sound on the TV. She gets defeated because she presses buttons on the remote but they don’t work. She quits and I feel helpless.  I call the concierge and they promise to call the floor.

I emailed Sally for help a few times as she asked but she never responded. After another night unable to cheer up Lynne, I vented in another morning email to top administrators.

Luna, the Assistant Director called that morning to talk about Lynne’s health care and mine. She worries because when Lynne and I have lengthy talks, she gets deeper anxiety from me and I get deeper anxiety from her. I admitted Luna was right. We both need help.   

She advised me to be cheerful like she is when she comes into the room. I watched her skillfully cheer up Lynne and try to mimic her cheerful voice and ability to distract Lynne away from anxiety.  Luna said, “She is so upbeat that it’s easy to do.  When she goes down, divert with all the funny stories and things that you’re doing.”

I admitted her technique works when staff come in with positive ways to dress her, help with shower, make her bed, give her breakfast, turn on TV, give her meds. But I’m stressed as a remote caregiver. I can’t do anything except talk, and she is anxious and afraid by the time she calls me.

Luna listened to me and got it.  She said, “Do this: tell her you’re going to hang up and call me or Jessica, the assistant director of overall care (nor her real name).”

I said, “I don’t like to do that because I want to respect your role as overall care director.  So, I call the concierge.  I’ve emailed Sally and she won’t return my emails.”

Luna understood and explained Sally was assigned to stay in the room of a COVID-19 patient and worked extra long hours. And Mina was gone that week. Luna repeated, “Call me or Jessica any time and we’ll get help. I don’t like emails.” 

I was pleased to be able to reach out to them and learn why Sally hadn’t responded. Luna had more news. COVID-19 restrictions should lift soon as everyone has tested negative. Lynne will be able to walk outside. She and her exercise director are going to bring down an exercise machine from the gym and try it for a week in her room. If it works, I’ll have to order one for her.  

Luna senet me a follow-up email, “Thank you Jim, I appreciate our conversations so much.”  She said a favorite caregiver of Lynne’s knows TV shows she likes and is going to make sure she is set up throughout the day.

I thanked her for our open conversation. That day I saw the plan in action while Lynne and I video chatted and she watched television. The TV caregiver came in and said, ”I know a show you like so you don’t have to watch tennis all day.”

She liked it. We called her sister to sing happy anniversary.  She said, “This Covid-19 thing isn’t so bad.  We’ll get through it.” We chatted for an hour-and-a-half as I did some work.  

That night she woke me up at 9:30 pm and again at 11:42 pm when she was in her regular clothes. She couldn’t sleep. The second call I told her she was in the safest and best place she could be and ordered her to go back to bed.

I couldn’t sleep. I was so stressed I worried about my heart. I had a cardioversion two weeks ago to restore a normal rhythm and suddenly I felt like my pulse was racing. I transmitted my heart data from my pacemaker to Boston Scientific. I took my pulse four times on my home blood pressure kit and had pulse ratings 115-116. Doctors said they get worried at numbers over 100. Should I call a doctor? I waited until morning. I emailed Luna that we needed to reduce wake-me-up calls because of my heart.

Then I was embarrassed. The cardiac care nurse said my transmission showed the heart was normal with no irregularities. I asked why that was. She said, “The question is, how do you feel right now?” I felt fine.

I emailed Luna that I was felt foolish and confused. She didn’t have to worry about a dad who was worrying about a heart he didn’t have to worry about while he was caring for his daughter. I doubt that comforted her.

Our family is recommending we set up a daily schedule for Lynne. Aegis is effective at the daily activity programs they run at regular times at regular hours before the lockdowns. Lynne participated in more of them than any other resident.

Our idea is to schedule times for music, exercise machine, TV and video chats. Staff could give her tasks as regular times, such as folding clothes, rearranging her dresser drawers, finding a book to return to Dad, coloring Aegis posters for residents. I discovered coloring greeting cards online. Lynne could color them, and I’d address and stamp them and drop them in mail.

Luna emailed, “I love the coloring greeting cards idea.”

We can do this because we keep talking and sharing to make Lynne’s life better. And because we keep caring for each other to roll with the rollercoaster ride.   

Trying to Remember Connections

Fun activities

Lynne called.  “I’ve got COVID.”

Fun activities

“I’m sorry,” I said, startled. “But you’re healthy, good lung capacity….  Hey, wait a minute.  Nobody’s called me. Someone would have called me.  I’m going to hang up and call you back.”

The concierge confirmed no residents tested positive and they’ll test again in a week. Following those results over time they could  remove restridtions.  I gave Lynne the good news. She was happy with that. We chatted a while. She said, “I can’t stop crying.”

Her camera wasn’t on so I couldn’t see her. She kept fumbling with it until she turned it on. She was pleased with herself. The chair was not in front of the Facebook Portal so I couldn’t see  her.  She started crying. “This COVID thing,…..”

“Of course you cry.  You’re in a lockdown.”

“I feel like a baby.”

 “It’s healthy to cry. You’ve got music.  You can tell Alexa to play music.”

“Oh, yea.”

“What music do you want?”

“Lyle Lovett.”

“Tell her.”

“Alexa, play Lyle Lovett.”

Alexa did.  Lynne stood up and danced.  I saw half of her dance.  She sang the lyrics and danced to her bed.  And  she cried again and sat down.

“Lynne, I can’t see you.” 

She moved the chair over. She told Alexa to stop. She saw my face. “What happened to your nose?”

How did she spot that, I wondered.? I had a bandaid because my sleep machine rubbed my the paper-thin skin on my nose and caused it to bleed until it scabbed over.  When I saw it in the morning I was  too sleepy to know what it was until I picked it off. It beld because I take blood thinner so I taped it tight to stop the bleeding.  She doesn’t miss a thing.

We chatted. The TV wasn’t on and it was time to go, so we hung up.  

She woke me up at 10:15 pm with a staff caregiver because Lynne was sad.  I tld him the Alexa was off because I couldn’t drop in on her. It was unplugged. I told him tennis was on TV so he looked for the remote and to find the channel manually. I turned on my TV.  She and I watched tennis like Karen and I used to do. We talked about Serena’s hair. I said it looked like a mop on top of her head. She said, “Its’s beautiful. It’s purple.”

It was purple.  We shared memories when she played doubles tennis in high school and won fifth in the state championshp. I couldn’t remember her partner’s name.  “Sophit. She came over here to play tennis.” 

“You have a better long term memory than I do.”

She laughed. “Dad…”

We talked until we were past tired and decided to go to bed. Nothing had worked quite right: thinking she has COVID, forgetting she could  turn on music, unpluging echo, tutning off the video camera,  crying, calling me after I went to sleep, wanting to go to bed but unable to without caregiver help and afraid to go out the door to ask.

I told her I’d call the concierge. We hung up. The concierge said  she’d go right up and get her in  bed.  

I tell myself to remember we chatted, we laughed, we cried, we danced, we watched tennis, we shared memories and we persisted.  

Recovery Plan for Bad Days

Fun activities,

This could become a regular lavender ritual

I’d dropped in on Lynne three times yesterday on her echo dot and she thought she’d done something wrong because she couldn’t go downstairs to see the concierge. Frustrated, I emailed her assistant director, Wanda (not her real name), to please see if one her people could cheer her up. I gave her some ideas: TV with her favorites on Amazon Prime and Netflix, a foot bath, calling me for a video chat, searching for her daily bag of trail mix attached to a photo of her sons and nieces eating ice cream. I thought she’d remember that photo.

Wanda delivered, and I thanked her for a nice video chat with Lynne last night. She called with help from a caregiver. Lynne sat with feet in the tub basin filled with lavender Epsom’s salts and a big grin on her face. They were laughing. Lynne said it felt decadent. She lifted up her foot in front of the Facebook Portal to show a wet, ruddy, healthy foot. We chatted until she stood up and wandered toward her door to ask for help getting ready for bed. We had a good night.

Wanda responded. “That was me. I had come in and out a couple times. I’m so glad it set your mind at ease. The lavender is a huge hit, this is a great night time ritual for her. We put the crickets ( her favorite) on the sound machine before I tucked her in, she seemed very happy indeed. I will make sure care staff know to make this a part of her nightly routine!”

I appreciated Wanda testing the idea and planning a regular routine. I asked if a caregiver could talk into her echo dot, “ Alexa, Drop in on Dad.” We could talk through the echoes because Lynne fiddles with the Portal during video chats: turns it off, turns sound off, and moves away from the camera. Maybe we’ll get video chats to work better again.

In the meantime I’m grateful we have staff who can give us new routines that make for healthy self-indulgence.

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.”

Focusing on Seemingly Minor Foot Pain

Short short story

Foot bath with tea-tree oil with Epsom Salts

7/18/20 Christine, an RN on Lynne’s memory care unit sent me a message that “Lynne was having pain and discomfort in her left foot and first couple toes, and she thinks she has a hammertoe. I approved treatment with their podiatrist scheduled for a visit.

I was pleased. Lynne has mentioned foot pain periodically during her stay and we had frequently alerted revolving staff in her old apartment. We’d traveled to Bellevue to buy new tennis shoes that she loved for CrossFit workouts. In her new memory care unit we alerted staff about her favorite tennis shoes and red clogs. Her red clogs were fashionable and easy to slip on. A nurse told me the heels on Lynne’s black clogs were unsafe. They were from a different manufacturer from her red clogs, so I bought black clogs that matched her red ones.

Karen had always helped with her foot pain because, as she said,  “Lynne’s got my feet.” That’s a bad inheritance. Karen had four foot surgeries, none completely successful. I watched Karen struggle with hers and she managed Lynne’s. Lynne had a podiatrist who helped her.

I didn’t know if Lynne’s pain was shoes, a hammertoe, a bunion, other toes, pain from a prior surgery, nails or whatever. Now we had a podiatrist scheduled to deal with it.  

7/22 A friend of Lynne’s sent me a note that Lynne complained about pain in her feet. Others had also told me she’d complained it. I assured her friend we were aware of it and a podiatrist was scheduled to visit next week. It seemed solved.

7/26 On Sunday night, eight days after Christine’s email, Lynne called in tears about missing Mom and  “…they they think I’m crying like a baby.”

Ever since her move, I was getting these calls even though she and staff seemed happy with the move. She was more engaged, perceptive and helpful. However, her medical care assessment indicated her mood swings were still severe. I focused on that becase I believed she was improving. Her moods swints were natural when adjusting to a location.

Over a series of emails and calls staff and Lynne’s sister and brother convinced me her sadness and anxiety are severe. She was facing residents whose minds and bodies were in worse decline. She had said, “I’m afraid.” Counselors at Aegis told me, “This is the hardest time.” We talked and I finally got a few laughs out of her. At the end I asked about her toe.

“Oh, it comes and goes.”

“How about now?”

“It’s a go.”

“Is ‘go’ a hurt, or doesn’t hurt?”

“Oh, it hurts.” She was in her black clogs, which was often when she complained. Why? They matched the red clogs. I was frustrated. I thought we solved that. Eight days and nothing changed even with a podiatrist visit? What did I have to do to stop it. I decided to calm down before venting and write this email in the morning.   

7/27 6:53 am “I’m not sure who to write to, but I want better care for Lynne’s toe.

Even after all this time we’ve worked on her toe, she called last night because it hurt. I get the feeling that caregivers who dress her are not fully aware of the pain in her foot and which shoes she should wear.” I added that I highly respecdt their care.  

7/27 The Medical Director responded that the podiatry visit was rescheduled because of a new lockdown from COVID-19 infections in Lynne’s memory care. That explained why Lynne felt such tearful loneliness Sunday night—nobody was there to talk to when she leaves her room.

7/28  9:35 am  The next morning I emailed Duke, the general manager, copying the other managers. I used Ben Franklin’s technique of asking questions rather than ranting. I asked:

  1. “Why wasn’t I informed Lynne didn’t have a visit from Podiatry?
  1. “Why don’t we have recommendations to limit Lynne’s options for shoes that work with her current pain problem? Why isn’t there an understanding somewhere in the room, or reports, that Lynne has ongoing toe pain that needs to be monitored by everybody?
  2. “Who should I count on for communications about her care?
  3. “I’d like to have an explanation of her pain and her treatment as well as guidance for dressing her.”

Shortly after I sent it, Lynne called me through her portal because she was lonely and her toe hurt. I called the concierge and asked him to get someone up there to help. Very soon a caregiver arrived who took off her black clogs and put on blue tennis shoes.

Almost immediately a new care giver arrived, Renaldo (not his real name), under orders to examine her feet. As I listened through the portal, Lynne explained she had surgery on her right long toe and that’s where it hurt. He kept questioning and listening to her. He comforted Lynne. He comforted me. A med tech arrived with pain medication.  

Renaldo left and came back after reporting to Sheila. Boy, was I uninformed. Lynne had pointed to several different toes on both feet as the source of her pain. He had squeezed every toe and checked every nail – no pain. He asked Lynne to show him which toe had the surgery. He squeezed it again and Lynne didn’t react.

Renaldo, Lynne and I developed a plan to replace her clogs. Lynne liked flip flops even though both of us recommended open toe sandals as an option. I gave up and ordered two different cushioned flip flops. They cost a lot less than black clogs.

Renaldo mentioned foot baths and Lynne said she loved those. So I splurged on a foot soaking basin and a supply of tea-tree-oil-foot soak with Epsom salts. If staff could keep her feet in that tub, she and all of us would feel relief.     

7/28 12:29 pm Sheila thanked me for sharing my email to Duke and sent me a plan that shared my email with caregivers, required caregivers to report signs of pain to med techs and nursing, and reminded them Lynne must wear footwear that doesn’t rub her toes. The clogs were removed from her access.   

Wanda called and introduced herself as the direct manager of her caregivers. They expect to receive COVID-19 test results in a day or so and be able to schedule podiatry.

8/1 Wanda sent me the attached photograph of Lynne loving her foot bath. She loves the flip flops.

8/2 Last night was I wondered why I was inattentive to her pain? Why did I brush aside comments from friends without looking into it more? How long did I let her suffer without finding relief. I reviewed my emails and realized I was focused on her severe moods and cheering her up. I felt staff was caring for her feet.  

I’ve got to be more attentive and assertive about her pain management, actuallly all of her care. I knew that. Why do I have to remind myself of that at 79 years old?  

Leslie and Lynne’s Music Lists

Fun Activities

Lynne dancing to Footloose on the Alexa playlist she and Dad created over a Facebook Portal video chat.

A caregiver in Lynne’s memory care at Aegis was infected with COVID-19, halting face-to-face conversations through plexi-glass in their “Outdoor Living Room.” We are restricted to video chats, again.
Friends from high school to today have remembered she loves music and gets energized to dance. In 2017 co-workers from the self-labeled Microsoft Talent Posse remembered an outdoor Lyle Lovett concert, so they checked his schedule. He was coming in a few weeks and they went as a group. Leslie, from high school, said girl friends revved up pop hits to dance on the furniture and shout the lyrics. She saved her playlist and promised to send it to Lynne.
At our last outdoor chat, I read titles from Leslie’s interview to Lynne. She giggled at that memory. I noted ones that made her smile, or say, “Oh, yeah.” Footloose was her favorite. I created a playlist of popular rock songs from her teenage years through college.
I couldn’t play songs with her on my phone after the lockdown. It’s hard for me to make her laugh by being a funny comedian or an energizing caregiver like hero Dad’s are supposed to be. It’s a long, lonely feeling of failure when everything I say is met with a slack face and respectful silence, or statements like, “I’d better get back.” Besides, I like music too.
Alexa had to help me. Could I use my Alexa echo to create a playlist on Lynne’s echo dot? I didn’t find any way. Lynne would have to give Alexa the commands. They’re easy commands, but I doubted she could repeat them accurately. I rehearsed how to coach her and waited for her call – my calls rarely find her in her room – she busy socializing somewhere.
She called last night and leaned forward so I saw the top of her head. I fumbled through my rehearsed lines but finally got it. I said, “Tell Alexa to create a Lynne music playlist.” Lynne frowned while Alexa next to her said she’d create a playlist. I whispered to Lynne, “Say Alexa, play Night Fever.” She couldn’t remember all the words. I said it louder. Alexa played it. Lynne sat up and tilted her head, puzzled by the sudden music. I said, “Alexa add this song to Lynne Music playlist. Alexa obeyed.
Next I played Staying Alive. Lynne began singing lyrics with a smile. We added it to her playlist.
Lynne chuckled, “We’re going to get in trouble.”
I said, “I’ll bet you won’t be able to sit still at the next one, Alexa, play Footloose.” Lynne stood up and danced. I took a picture.
We played a few others. She told me I always make her laugh, and she loved me, and we’re going to get in trouble. Finally she decided it was time to return to her people and slowly walked out of her room.
I said, “Alexa, turn off.”
We had fun. But I went to sleep wondering if there was some way I could do more to fire her imagination. I miss listening to her talk and laugh. I miss her energy. She’s slipping away.

Luckily Dancing with Lynne and Lyle Lovett

Fun Activities

Lynne and Dad dancing to Lyle Lovett on her Alexa echo.

Lynne and her assistant care director, Brenda, called for a video chat last night, as Lynne does when it gets to be much. Luckily for me, they called me. I needed to be cheered up too. Inspired by interviews with her friends who remember singing and dancing with her at outdoor concerts, I suggested we add music. I told her to say, Alexa play Lyle Lovett. Her Alexa echo and my Alexa show played Lovett. She sang the lyrics and we rose out of our chairs to dance through our video chat. And we laughed.

We listed some artists we could enjoy next time. And then wham, I remembered the most cherished Father’s Day gift Lynne gave me, a concert at The Gorge with Crosby, Stills and Nash. Their finale was Teach Your Children Well, one of my all-time favorite songs I’d been hoping to hear. We stood in the sunset with the packed crowd roaring the lyrics as tears flowed out of my eyes.

We’d like your help. My youngest daughter and I listed some artists we think are her favorites, but we don’t know everyone she’d like on the list, particularly starting in the ’80s to the present. Help us please: name favorite artists and concerts she loves to sing and dance with. We are posting the list below by her Alexa echo so caregivers fill her apartment with music. We all should sing and dance once in while, especially in lockdown.  

LYLE LOVETT  CROSBY, STILLS & NASHCAT STEVENSEMMEY LOU HARRIS
MARY CHAPIN CARPERNTERWAILIN’ JENNYSDOLLY PARDONELTON JOHN
GEORGE MICHAELMADONNAMICHAEL JACKSONU2
ABBATHE BEATLESROLLING STONESTHE EAGLES  
SIMON AND GARFUNKELCARPENTERSALLISON KRAUSEOLIVIA NEWTON JOHN
LORETTA LYNNGARTH BROOKSTHE JUDDSCARTER FAMILY
THE CHICKS   

I’m Happy She’s Happy, but ..

fun activities

Happy Times with the boys

For the last six days Lynne’s memory care unit prohibited face-to-face conversations because one caregiver had Covid-19. All tests since have been negative.

She has been busy and happy with activities. I am happy she’s happy. However, I miss the fun chats we had so I have tried to cheer me up by finding ways to chat with her more often. I’m struggling.

Ten times over the last six days I spontaneously called, hoping she’d gleefully call me back by tapping my face on her Facebook Portal to return my call. After all, she’s told caregivers I’m the greatest dad in the world.
She might not believe that anymore because she never returned my calls. Maybe she needs to be reminded to check the Portal. Maybe I could program the Portal to sense Lynne’s presence and say, “Dad called. Tap his face.”
One day she sat by her window and I called up to her to chat. She was excited and stood up. She turned away from the window and never returned. I yelled louder, called her Portal, her phone, the concierge. Nothing. Apparently she found something better to do and forgot about me.
The last three days I threw a pickleball against her windows. She was busy elsewhere.
The Portal and Alexa were supposed to increase chats by eliminating problems with video calls. Calls need to be scheduled a day ahead. Caregivers need to be by her side. They need to locate Lynne. They need to complete more urgent care first, so they often call late. Sometimes they never call.
Hoping Lynne would call on her cell more often because she enjoyed lively conversations, I reviewed ways to make conversations more fun. I got my chance on the 4th when a frustrated caregiver called. She tried for half-an-hour to set up a scheduled video chat on the Portal with Lynne’s friend. I couldn’t help her. I used an energetic voice to ask an open ended question, “How was your day?” It worked. Her day was good. She was cheerful.
“What’d you do?” Immediately, I knew it was the wrong approach. Alzheimer’s began erasing her short-term memory years ago.
“Oh, we had, you know, it’s, .. ah, … we, ..um, the thing, ….. I can’t remember… I can’t remember things, and it scares me.”
I agreed it’s scary, and don’t remember anything else except we agreed she’s on a better floor. Her long term memory works. She remembered names of high school friends. Why can’t I remember to share memories from family and friends after years of care for my mother and her?
Monday night Lynne and a caregiver called for a video chat. I shared memorable images from an interview with a friend. She remembered most of them and laughed a lot. She said, “I love you, Dad. I’m doing things, you know. Lots of things.”
Determined to improve video chats I set up my new Alexa Show in my office and contacted Amazon about how to link it to Lynne’s Alexa dot. Aegis scheduled a time with a caregiver so we linked up at the same time. We did it. A few minutes later, Alexa told me Lynne had dropped in. She was excited. We chatted and then she had to go. She was busy.
I’m happy she’s happy. I miss her. I keep busy because I have lots to learn to feel like the greatest dad in the world.

We wait to celebrate

Fun Activities. Corona-virus. Covid-19

Happy Birthday Dad

Ten minutes before an afternoon business conference call yesterday, I phoned Lynne’s Portal. She answered in her fuzzy sky-blue cotton sweater. She picked it out at Aritzia before Christmas when we shopped at University Plaza for her surprise Christmas present. “Tell me about your day.”
“It was fun. I like it here. I feel like I’m one of the crowd.”
Some of the people were still a stitch, though. I asked if she ever says, “Alexa, play music.”
She said, “Alexa, play music.”
Alexa filled her apartment with a hit from her high school days. She laughed. She was overjoyed. On impulse I told her my birthday was tomorrow.
“It is? We’ll have to do something.”
She had to go to the bathroom. I had to hang up.
I called the concierge and asked if someone could help Lynne give me a birthday present. He liked that idea and would work on it. I scheduled a video chat when a caregiver could make sure Lynne was there. On her floor they only schedule two per day at 11:00 and 11:30 am. 11:00 am was available.
I didn’t tell him my son and his family are arriving after lunch. Maybe I can add them to my video chat with Lynne while they are driving.
Late that afternoon the medical director phoned about my email regarding Covid-19 testing. They had a professional team test every resident and caregiver in the 124 apartments on six floors. She observed every test. They hoped for results in 24 hours or so.
We wait. To celebrate.

Covid-19 Visited Lynne’s Neighborhood

Health Issues

A caregiver was infected with the coronavirus when they worked in Lynne’s Life Neighborhood memory care floor on June 22.  The caregiver tested positive on June 24. Today, June 30, a test team arrived to test every resident, caregiver and visitor on the floor who might be infected.  We do NOT know either how long it will take to get results for all the tests, or how long Lynne might be quarantined based on the results of everyone on the floor. Nor do we know what would be done if residents on the floor or caregivers are infected.  

We wait and are thankful. We are thankful that Aegis follows strict health protocols to limit the spread of the virus and Lynne follows them. Weeks ago this floor had a resident infected by Covid-19 and no one else became infected. We are thankful health care workers are continuously reducing the severity and length of symptoms and improving recovery rates. We are thankful for your prayers and concerns.

Resurrecting Memories from Friends

Fun activities.

Lynne on the far right in a butt race with South Eugene High School friends.

Facebook friends are resurrecting fond memories for Lynne. A friend I didn’t recognize commented that reading her posts meant a lot to her.  When I mentioned her name to Lynne, she paused, and said, “She’s a speech pathologist.” Pause. “She helped Henrik when he was in high school.”

That night I replied to her friend, “She remembers you as a speech pathologist, fondly, because you helped Henrik. For your information, he is in his junior year at WWU with a 3.6+ GPA with a major in communications. He’s taking journalism and research methods this summer.”  

Lynne lit up when I had news from Mary, a friend at South Eugene High School. They hadn’t seen each other for years before their 20th class reunion where they talked for hours. They’ve video chatted recently. She agreed to let me interview her.

Mary had photos of high school days at Christmas Parties and butt racing. Butt racing was one fun I missed during high school, so Mary showed me the picture of girlfriends sitting on the floor of a basement scooting on their butts to the opposite wall. That flashed memories for me because Lynne preferred scooting across the floor on her butt in her diaper by pushing off with one hand and then the other. She scooted so fast she refused to crawl. We set her down on her knees because we read crawling was important for developing body skills. She’d push onto her butt and take off. She crawled briefly walking was easier by then.

Lynne remembered when her classmates played an elaborate prank on their high school rival, Churchill, before a basketball tournament game. A boulder inside the campus was painted by Churchill students for various causes, so Mary and Lynne organized a midnight raid to paint the rock with SEHS purple before the game. Their tactical operations team successfully organized and executed the plan to scale the chain-link fence in paint clothes with paint cans and brushes, douse the rock in purple and escape back over the fence.  When they bought the paint, they added painter hats for each teammate. They wore the hats as they stood together and taunted the Churchill fans with cheers that undoubtedly created the essential energy necessary for SEHS to win with a last-minute shot.

Mary admitted she has tendencies to be a pack rat. She pulled memorabilia from boxes underneath her bed and sent photos, including her handwritten list of the 19 paint pranksters with a check mark by each name. As I read the names to Lynne she nodded or murmured, “Yep” at every name, except when she corrected me if I miss-pronounced the handwriting: “Jenni,” “Conklin,” “Ballin,”  She names brought extra comments: “He was way cool. I didn’t go out with him.” Why not?  “I was afraid.” Another:  “He was going to take me to the prom, but his dad wouldn’t let him.” Why? “Too late.”  Another: “He was always after me. I didn’t want to go out with him.”

I said, “You must have had quite a painting party.” Pause.

“That’s why they TP’d me.”

What?!  Our family was surprised by toilet paper draped all over our front yard and garage doors when we arrived home from a trip. Our three kids insisted it was a mystery to them. We never knew.   

Another FB friend teaches at Shoreline Public Schools. She commented, “I was in grad school with her at Seattle U. and adore her. I haven’t seen her in quite a while, but please tell her that JT says hello.”

When I mentioned her last name to Lynne, I fumbled her first name because I didn’t know it. Lynne smiled. “JT.” Pause. “That was nice.” Pause. “I’m so glad you’re doing this.”

I’m not ‘doing this’ – resurrecting memories of friends for Lynne to re-enjoy — her friends are doing it with us.

Breakthrough Video Chatting

Fun activities

Lynne talking to Dad on the Facebook Portal

We added technology to simplify communication between Lynne and family and friends. The movers set up Alexa so Lynne would say, “Alexa, call Dad.” My phone rang and we talked. She liked It. Several times a day she liked it. So did I. She filled in my empty social calendar.
Juan, the Life’s Neighborhood technically skilled activities director, insisted we could do better with a device called Portal, sold by Facebook. Lynne could say, “Portal, call Dad.” She could call every one of her friends on Facebook by using their name. Every one of her Facebook friends could call her on Facebook’s Messenger and it should ring her Portal rooted in her room, compared to her wandering phone. They could Facebook video chat on the portal’s 5” wide screen. I ordered one that seemed to arrive by the time I got down to my mailbox.
Juan installed it and we discovered a nice surprise. The Portal screen has a camera that follows her movement as she roams around the room. That’s an improvement because she disappears from her phone screen during chats.
Wow, did it work on Father’s Day with my son’s family on their patio in Bellingham. Lynne’s sons, Henrik and Simon, joined us. Lynne video chatted with us as the boys walked around to face everyone with their cell phone.
Lynne is video chatting with others. Monday a friend didn’t connect with her on a planned call but Lynne called back on Tuesday via video and they had a wonderful talk. Her friend thinks Lynne saw the call on the Portal screen and pressed her profile face to dial her back. Lynne told me her friend stopped by. Perfect! That is how we hoped it would work.
Nevertheless, Lynne told me Tuesday it doesn’t work. I do not know why. She rarely answers when I call during her active social calendar in the new neighborhood. Eventually I call the concierge to ask a care giver to connect us. They call on Lynne’s phone and I call back on Messenger+. I usually meet an unfamiliar caregiver who is unfamiliar with the Portal. I explain it to the best of my limited knowledge.
I contacted Juan who said he is thinking about different ideas to help Lynne. He agrees the simplest way is call the concierge and ask for help.
Nevertheless, we persist.

Lynne and I and Better Care

Fun activities and care giving after a move

Lynne Outside Walking Last Week

Lynne’s quality of life has steadily improved since Luna’s idea to move her into Life’s Neighborhood. So has mine.
Luna’s office is on the same floor and Lynne is welcome any time it’s open. Lynne found it. She reached out to Luna about her anxiety adjusting to the new milieu of residents, caregivers, and culture on the new floor. She wanted to help residents, but she didn’t know how. Luna promised to tell caregivers they could ask Lynne to help, something they had never done with the other less able residents. Juan, the activities director for Life’s Neighborhood, grouped Lynne with residents on other floors to walk outside together five days a week. He has plans to upgrade her video chatting.
Luna and Lynne spent two hours rearranging her apartment because it looked like a dorm room. She has plenty of clothing. She needed a table so she could read and look out her window. My contribution was to remind Luna that the table I had when I lived there is still in the basement. She and Lynne never mentioned the cat.
They bonded. Both studied Mormonism, Luna following her family and Lynne following her first love. She confessed they wrote each other love letters with plans to marry. Luna learned more about that love than I will ever know.
More importantly, Luna realized Lynne was tugging at her bra and it hurt. Luna recommended Lynne buy new bras. She agreed, “Dad could buy me a new one.”
“No,” Luna said, “I’ll shop with you at Nordstrom’s Rack on Monday.”
I told you my life has improved. I helped her buy the one that hurt.

“The cat still hasn’t shown up.”

Schmitty at a New Home

“The cat still hasn’t shown up,” Lynne remembers infrequently since her move to a new apartment. Then she moves on to something else. No worry. No curiosity about why.
Not surprising, because her cats have always come and gone on their own. They’ve disappeared for long periods of time, even chosen neighbors to adopt, so it’s a typical cat attachment for Lynne. She feels no abandonment. Just a feeling Schmitty can take care of himself and may show up, or not. She is busy with a new room, rules, caregivers, exercises, songs, friends, dining.
She needn’t worry because he’s been well cared for, except when he was left alone in the old apartment growling and meowing. “That was not a good plan,” said Skylar, a caregiver who took him home for the weekend.
Several volunteers have agreed to adopt him, including Skylar. She, Patricia, the volunteer from the rescue shelter, and other staff have considered the best trial homes for Schmitty.
We received news he appears comfortable at his present home, as you can see from the above photo. An update from a director said, “A nurse is trialing adoption of Lynne’s cat and she loves him so far! Seems like a good fit and he will have another kitty friend to play with.”
Next time Lynne remembers the “cat,” I think I’ll update her that it may be a long time before he shows up because he’s found a loving adopter and kitty friend.

Use Care Skills for Loneliness and Dementia from Teepa Snow and Cat Stevens

Fun activities

Cat Stevens very best songs and lyrics helped Lynne and Dad

Loneliness from isolation causes brain change that appears to speed up the progress of dementia symptoms, according to Teepa Snow, a world famous educator on positive approaches to dementia care www.teepasnow.com. Loneliness brain changes increase chemicals for stress responses and reduces chemicals for mental acuity, immune responses and breathing. Those were the symptoms that worried me during Lynne’s isolation: decreases in acuity to make decisions, remember names, and understand jokes, and increases in anxiety, stress and paranoia.  

Teepa Snow explained these brain changes in a short podcast about loneliness and dementia. Better yet, she recommended practical care behaviors to overcome those declines. It was powerful. She relieved my anxiety  about Lynne’s decline and gave me skills I could use.. They worked.

I used her lessons to create a customized “automobile restorative therapy” to relieve her negative brain change when I drove her to an appointment with her doctor the weekend after she moved in to her apartment. When I picked up, I shared my excitement about Teepa Snow with Curly, the Activities Care Director. He also thinks she is marvelous.

Encouraged, I followed her directions. First, be energetic to uplift her when you greet her. Second, pause, to let her respond with social skills to strengthen synapses idled by loneliness. 

Third, make her laugh watching a funny video of dogs and cats escaping isolation that appeared inescapable.  Fourth play music, Cat Stevens is who she likes, and pause as she sings the lyrics. She started slowly, but increasingly sang more lyrics as she listened to every song over the 20-minute ride. She said she didn’t recognize some of the songs and I didn’t either.

We socialized with staff and her doctor whom she’d known since before she was a mother. I asked both whether she was experiencing menopause and learned that ended years ago. I had no idea. Her doctor is satisfied with the low prescriptions of her antidepressant medications given her likely improvement after isolation.

We walked outside for over a mile in the sunshine to eat frozen yogurt. I reviewed the good news from Teepa Snow that isolation was affecting her depression, memory loss, anxiety, etc. She liked what she heard.

On the way home she listened and sang along with Cat Stevens. She asked, “Is this all Cat Stevens?” She was processing and generalizing. Good synapse exercises.

“ Yes, do you want to switch?” Pause

“No, I like it.” I stayed silent — steeped in a Teepa Snow pause cause.

I told my grandsons so they’d use the skills with their mother, particularly pause.  Her son Simon said, “Yea, did you notice Curly use it when we had the Zoom conference on Sunday?”

He paused. I needed it — I was embarrassed. He was better trained. He plans to be a nurse and has worked in assisted living.

“Do you remember when they logged into the portfolio of participants? Curly pointed to each person on the screen and asked Lynne if she knew who that was. He paused after each one. She named them.”  

I have so much to learn.

By the way, Teepa Snow’s care behaviors helped me, because the brain changes depressing me were the sames brain changes depressing Lynne.  

Hopes and Fears in Moving Out of Isolation

Short Story 3086 words

Lynne waving from her new apartment

Two days after nothing could go wrong about moving Lynne to Life’s Neighborhood, Skylar, a caregiver on the night shift, called me at 9:00 pm because Schmitty the Kitty was out of cat food. She said, “Kim had noticed it a few days ago. Luna was going to call you, but I guess she forgot. I’ll go get some food.”

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Luna Has an Idea

Short Short Story 1810 words

Late one Monday afternoon, Luna, the Director of Operations, called about an idea she wanted to share with me immediately — Lynne might be better served in Life’s Neighborhood for three reasons. She would be safer, more social and more helpful.

That was a breakout moment for me. I had avoided Life’s Neighborhood.

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Her Care Isn’t Working Well Enough — Feeling helpless

short short story 984 words

Lynne on a home screen in a phone holder

Maybe I began to get hopeless because I stayed inside on Saturday morning when Lynne and her exercise trainer went outside and I missed her. Maybe it was Sunday when I slept in until 10 am and missed her again. Maybe that’s why I felt handcuffed to my apartment. Her comfort care in assisted living felt like it was going well before the Covid-19 confinement, but now it doesn’t feel like it’s working well enough. I’m feeling hopeless, helpless.
I cannot sit with her and absorb what she’s experiencing. I want to see her with Schmitty nesting, purring, petting, grooming, brushing. I want to check on his food supplies, kitty litter, sleeping blanket, hideouts. Would he come to see me? Do other caregivers like him?
Or, we could run through her Facebook to see who sent her messages. For example, someone sent her a message and I found out she is from our hometown of Eugene.
Liz in marketing at Aegis said she fixed Lynne’s necklace and I’m jealous. I could have at least fixed that. I’m glad it happened, but are there other times, other necklaces, clothing, shoes that need fixing?
My video chats are too often hit or miss. Someone can help set her up, but she’ll click it off at times. I’ll wait for her scheduled call and it won’t come. Is her phone charged? I bought a stand for her phone, but staff say it doesn’t work. Why? I can’t figure it out until I get it back. There are Zoom meetings she could join if we could reliably schedule them. It’s all too uncertain. Staff are trying hard. They’re busy. Am I too patient? Should I get agitated? I feel useless. Not in control. It’s not working well enough.
If I was there we could watch her favorite TV crime mysteries on channel 103 like we used to enjoy. I ask her if she watches TV and she says that’s an idea. She never remembers watching it. She can’t find the channels. I bug staff to turn it on, and worry about bugging them too much for something that Lynne isn’t interested in. I hate the helplessness. It’s not working well enough.
Friends who Video Chat with her give me suggestions from their conversations, such as “Lynne says her feet hurt.” I hadn’t heard that and passed it on to the medical director and the care director. They hadn’t heard it either, but would check it out. I wonder if they remember. Lynne doesn’t mention it..
She reads. I’m grateful staff say she’s always reading. I could read to her. They recommend a book case to store her books scattered around her apartment. They worry about her safety. That doesn’t worry me. I like them spread around so she runs into them, sits on them, touches them, opens them and gets pulled into another orbit beyond her loneliness.
The worst part haunting me is her loneliness when she’s not reading, or outside, or chatting. I get her calls when she’s so lonely she breaks confinement and shows up at the concierge desk in the evening or early mornings. The concierge calls me and I cheer her up with good news and jokes. She says I always cheer her up, but that never opens her up to share with me what she’s wrestling with, thinking about, feeling, remembering. Auto-biographical memoirs of people living with dementia talk about their confusion, or feel like they’re rambling. They regret what they have lost. They like writing and sharing their thoughts.
Lynne wrote about those thoughts in a journal in 2014-2015. She was failing at her job teaching special education students. She had never felt continual failure at anything. She solved her problems and decided a journal would help. It was her last journal. She gave it to me. It contained prayers. Her first entry on January 5, 2014 was, I want to know that everything that needs to happen is already in process. I want a cease fire in my war with time. I want to move through my day with grace and ease.
She didn’t write again that year, during a time she quit in frustration and the District convinced her to transfer to another school. Exactly a year later on January 5, 2015, she wrote a hopeful note about a cease fire with time: I am grateful to remember that I have enough time—time is only a figment of my imagination.
The cease fire didn’t last, but she fought on until July 14, 2016, when she agreed to see a neurologist. I went with her. He gave her the one-page Cognitive Assessment of Minnesota and she admitted she had problems with it. He was “concerned” and scheduled an MRI.
Karen wrote this email to family the next day: “After the appointment, I asked Jim to bring Lynne here and she agreed she didn’t want to be alone so she’s here now. Lynne is now accepting that she may have some serious problems and she’s frightened and very sad. She’s been able to talk about her fears with us.”
That’s over six years since her first journal entry! What thoughts does she wrestle with now? When I’m with her she will ponder something and begin to respond with an introductory phrase like, “That’s what we did at ….” And pauses. She searches for the noun that fits, and, given time, she may find it, or we may help with suggestions, or she’ll get distracted, or give up.
Care giving advisors say, “Join them in their reality.” That’s not much help when you can’t find her reality sitting beside her, let alone from another apartment.
The isolation from the Covid-19 virus combined with her stage of acuity has disrupted her care and it’s not working well. I keep rebelling against it, but I can’t come up with anything else to dramatically improve the care we’re giving her. It’s not working well enough. I feel helpless. Hopeless.