We quit playing music on a cellphone in a fanny pack on Lynne. She takes it off. It goes dead. Staff on multiple shifts & forget to put it on her. Some songs bother her. Other residents take her cellphone. I stress about it. Any ideas for us? #alzauthors#alzheimers#caregiver#endalz
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.
|LYLE LOVETT||CROSBY, STILLS & NASH||CAT STEVENS||EMMEY LOU HARRIS|
|MARY CHAPIN CARPERNTER||WAILIN’ JENNYS||DOLLY PARDON||ELTON JOHN|
|GEORGE MICHAEL||MADONNA||MICHAEL JACKSON||U2|
|ABBA||THE BEATLES||ROLLING STONES||THE EAGLES|
|SIMON AND GARFUNKEL||CARPENTERS||ALLISON KRAUSE||OLIVIA NEWTON JOHN|
|LORETTA LYNN||GARTH BROOKS||THE JUDDS||CARTER FAMILY|
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.