Sharing a Scooter on Video Chat

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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

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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.      

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.  

A Care Team Shares How to Fight COVID Isolation

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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

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Lynne called.  “I’ve got COVID.”

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“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

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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.

Leslie and Lynne’s Music Lists

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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

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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