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 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.
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.
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.”
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.
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.
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.
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.
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.
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.