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.”

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.

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.  

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.

Continue reading

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.

This is Hard

Short-short story

Midnight. My two sleeps in my apartment were challenged last night. A beep-beep-beep sound penetrated my first sleep at a way-to-early time, first raising awareness and next  understanding – it was a warning beep. For what? My heart? My bi-pap sleep machine? I hit the bi-pap stop button. Pulled off my sleep mask to find the source of the beep. The beep had stopped. When did it stop? I checked my bi-pap screen. No warning lights. My heart monitor  screen on the floor? Green glow means OK. My radio alarm? No alarm lights on. My phone? No alarm going off. What? Silence. Sleepy. What?  Check them again. Walk out my bedroom into my kitchen. Nothing on the microwave. The oven. What? Was it a truck backing up on the street below my open fifth-story window? The beep was too loud for that. 

I was alone with questions. If Karen was alive she would help me figure it out. Or ask why my alarm went off. At least I avoided that question. 

What to do now? I had too many options for my sleepy fog.  

I could go back to sleep. I tried it. Didn’t work. Got up. Frustrated. Pasted comments from friends on Lynne’s Facebook page so I’d have a written file in case I ever figured out what to do with them. I made notes for a to do list. Ate breakfast and climbed back into bed for my second sleep of the night. Frustrated. This is hard. 

                                               ———————————

6:00 am:  I was asleep so this is based on what I’ve gleaned about Lynne’s normal wake-up routine.

Lynne woke up in her assisted living apartment to the white noise of rushing water in her sound machine. Good sleep. Turned off her machine. She sorted through her options in her cognitive fog. She never goes back to sleep. Dawn rose through her 3rd-story window with a view over the rooftops of Seattle’s Madrona neighborhood. Occasional cars drove by, fewer with the Covid-19 lockdown that squashed the early bustle of commerce at the corner of Madison and 23rd St. Silence prevailed. Way too early. Too early for a caregiver to knock on her door and say “Good morning, time to get dressed.” No one to comb her hair, put on makeup. No one with breakfast. No one with medications.

She got out of bed. She saw a blue and white sweater on the floor and pulled it on over her pajama top. She did not see her glasses. She ignored the books on her bedside table. She went to the bathroom. She came out to the living room.. What to do?

She saw books in the chair. The Lacuna. She didn’t like that book. She saw magazines. Sojourner, Dad’s magazine. Journey, Dad’s magazine. Astoria was on the table. She liked that book. She opened it and started reading. She read for a while. She got tired of reading it. She went into her bedroom and laid down on her bed. She saw The Seamstress on the table by her bed. She opened it and started reading. Then she did not want to read books. And no one had knocked on the door. She wanted to leave her room, but she could not go outside without a caregiver. She was hungry. She had to wait until they brought her breakfast. She could not sit with her friends for breakfast. She had to stay. Alone. This is hard. She walked into her living room. She saw her phone. She was surprised. Where did that come from?  She picked it up. She called Dad. 

                                       ——————————————

7:30 am A gentle jingle-jingle-jingle penetrated my second sleep, first into my awareness and second into my understanding. My phone was ringing for a video chat. At 7:30 am? Too early. Rushed over and picked up the phone. Lynne calling.

Her face popped up on my screen. She did not have her glasses on. She had bags under her eyes, or maybe yesterday’s mascara wasted after a night-on-the-face. A blue and white sweater covered her pajama top. Her mouth drooped. Her voice cracked.

“This is hard,” she said.  

Somehow, she had found her phone. I realized it was left in her room after yesterday’s video chat with her boys.  Everyone had fun on that chat. Her voice jumped with excitement as each boy joined the chat. The phones were full of laughter. The boys created hi jinks in the Messenger app with a feature that super-imposes silly images and masks on participant’s faces. Dad clicked on with huge framed glasses and clenched a rose between his teeth that kept falling out when he talked. She had belly laughs. “Oh, I needed this,” she said.

That call ended last night as always. Lynne and I slid into sadness as one boy at a time vanished. One had to go to work. Another had homework to do. The youngest had already left to finish his paper due the next day. I was last. “I’ve got to go too,” I forced myself to say. I could tell it was hard for her to lose the last face. I promised to connect tomorrow. I clicked her face off. Silence. It was hard.     

Now Lynne and I were on the phone before breakfast. Like old times before we took her phone away. She called Karen time and again at odd hours when she could find it. We reprogrammed it to make it easy to call my phone and left it at the concierge desk to know where it was and keep it charged. She usually needs a caregiver to start the call.

She was apologizing for calling, for being early, for interrupting, for not having an appointment. But it was hard.

We chatted about the day and the fun we had with the boys. Too soon it was time to click off again. It was hard.

The Moment Lynne Knew

Lynne taught special education students in public elementary school. She had two aides to help her with 5 – 10 students. The children assigned to her had not responded to instruction in traditional classrooms as a result of medical and emotional diagnoses, such as autism, anger management, physical impairments and emotional disturbances. She developed an individual educational program for each student and measured their performance. The students require continuous class management to keep them occupied and minimize disruptive behaviors.
Her last day in class I helped a boy read several pages. After 15 minutes an aide excused him by saying he did very well. He quickly leaped up on the windowsill. It was his longest reading. The visit was a whiff of Lynne’s whirlwind of common disruptions: talking, persistently out of the seat, defiance, ignoring instructions, aggression. All the while teachers are alert to silent withdrawal such as shyness, rocking, staring, hand flapping.
Each day started with Lynne’s blackboard schedule that gave structure to comfort teachers and students. One morning, probably in 2016, she could no longer deny something was wrong with her mind. She picked up the chalk to write down the date. She could not do it. The chalk in her fingers was suspended in mid-air in front of teachers and students. She knew the date, but she could not tell her fingers what numbers to write.
She covered up that day, and kept covering it up, because she believed she could handle it. She had to.

A Simple Video Chat

Caregiving for video chats sounds deceptively simple with my daughter, Lynne, diagnosed with moderate to severe dementia from Alzheimer’s disease. She’s confined to her small apartment in an assisted living facility under strict precautions due to the Covid-19 virus pandemic, so every day I bring her a note card and schedule a video chat.
I asked for a time from one of the many different people who serve as concierge on the revolving 24/7 shifts. They are now swamped with added procedures daily, including most recently, scanning the forehead of every person entering the building. My request posed no problem. “Let’s check her phone. Is it black or white?”
We keep it at the front desk with her name on it, so we don’t have to search for where Lynne leaves it. I said, “Neither. Her name’s on it.”
“Neither of these has a name.”
“It should be plugged into the flashing pink and white cord to charge it.”
“We have the cord, but it’s not plugged in.”
“It’s probably still in the apartment and needs to be charged.”
“OK, I’ll call and have somebody bring it down. What’s the password? Can I disable it so it’s easier to use?”
“Yes, that would be fine.” I felt foolish. They’ve written it down somewhere, but it’s a constant roadblock for new caregivers. There’s no reason to struggle with it. I’ve emptied her phone of sensitive data. Why didn’t I think of that?

I called the desk at 1:15 pm. The same concierge answered. “I couldn’t disable the password because I needed her thumbprint.”
“She still has her thumb. Have her do it with you.”
“I just wrote in on the phone.”
“That’ll work. That’s the same as disabling the password.” Why didn’t I think of that?
I called her phone. The caregiver answered but couldn’t turn on the video.
I couldn’t help her. Instead I saw a closeup of my 78-year old male face. Awful in a fuzzy video chat screen. Pale skin, wrinkles on my cheeks, big ears, stray eyebrow hairs, droopy eyelids, saggy eye bags, lower lip hanging open. I almost hung up on me.
The caregiver gave up. “I can’t turn on the video. Why don’t we call you?”
“OK, call me. I can turn on my video.
“What’s the password?”
“It’s on the phone.”
She called and I clicked on video. Perfect. My picture shrunk and I saw her beautiful smile under salt and pepper hair streaked with gold. I heard their laughter. The video camera went into constant motion. I saw closeups of her ear, the blonde streaks in her hair, her fingers.
“I don’t need a closeup of your ear.”
“Oh. OK, better?
“Yes, much.” As we talked I saw unobstructed views of Lynne’s smile, her face, her hair, the ceiling, the refrigerator, her shoulder, her ear, her face, cabinet door. At least they weren’t my face.
The screen went dark. I saw a message that she turned off her video.
“You turned off the video.”
“Oh, how do I turn in on?”
“I don’t know.”
The caregiver showed her how to turn it on. Lynne and the caregiver in her white mask peered into the camera before the caregiver left for another call.
“Oh, there you are,” Lynne said. “I can see you again.”
I updated her on how well her sons were doing. She turned it off again. She found the way to switch it back on.
We talked about her brother and sister and nieces. I told her a few days ago I’d yelled up at her open window on the third floor, but she didn’t answer. Next time I’ll try to bounce a pickleball off a window.
She laughed. “Dad,…”
Soon, her voice sounded tired from the effort. “I should go now,” she said.
We hung up. It was a good call.
I couldn’t throw the pickleball at the window because canopies covered the sidewalk to keep people dry and forbid throwing pickleballs at the window. Maybe I’ll get a small drone to fly in her open window to deliver her note card.