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.

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.

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.  

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.   

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.

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.