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.”

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

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.   

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

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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.

Resurrecting Memories from Friends

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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

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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.

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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.