Lynne called. You said I’d like this place I do. Activities, care, safe. Staff love you. You’ve got a hard job to walk — can’t remember, find words, figure things out. You’ve got to fight through it. You’re strong. You can do it. Where’s your smile? Everybody.. always loved your smile. You used it all the time. I was afraid you’d run out of smiles. I checked, though. You can never run out of smiles. Go give ‘em one of your smiles. Slight chuckle. You always make me feel better. OK. She stood up in a warm shawl, hair neatly parted, framing her face with a thin smile and walked out.
I can make her feel better, for a while. I can’t make her think better, ever. Nobody else can either, for a while.
Early before Lynne’s 2nd birthday party, she was crying, anxious, didn’t want to go. Why? Confined? Lonely? Isolated? Trapped? Embarassed? Caregiver Dorothy and I encouraged her. Dorothy escorted her. We had fun.
Aegis reduced its quarantine restrictions allowing caregivers to accompany Lynne on walks as many as three times per day. She’s active, so the floor supervisor gave her a fourth walk one day. Our family ordered a stationary bike for her room, where riding it would lift her spirits during Seattle’s oncoming cold, rainy weather and future lockdowns. She and staff were happy when I printed a picture for them. That picture lifted my spirits before it arrived. I scheduled an Outdoor living room visit where we could talk through plexiglass shields. I showed her a heartwarming video of a Labrador mother using her paw to protect her last puppy from being adopted. Lynne’s vision has declined so she used her finger to focus on it. “What is it? Is it mine? Is it a puppy? Is it mine?” “No, it’s just a funny video.” I wondered if she thought it was her dog. She stood up, disappointment draining the smile off her face. “It’s not mine?” She started to sob. She had said she wanted a dog earlier that month, but we had told her that wasn’t possible. “Honey you can’t have a dog up on your floor.” She sobbed as she stared at me and backed in and out of the curtains twice, sobbing harder. She staggered toward the front door and hit the windows again as she backed away from me. I stood up wondering what I could do. A caregiver came out quickly to comfort her as she guided her back inside. I told them it was about a puppy. I was sad and miserable. How could I have forgotten she wanted a dog? Very soon I got a text message. They had redirected her to the picture of the bike. “She’s fine now.” I was too. Caregiving is a long, bumpy ride.
Lynne called last night at 10 pm, melancholy without tears. “Not sure if I can do this.”“Sure, you can. Your Grammy Helen did it. Once you get through this part, you’ll be happy. Grammy Helen was happy.” “Yes, she was.” Pam had phoned me about her video chat with Lynne when her boys joined in. We reminisced about Pam’s plight inhaling wildfire smoke in California. I asked her about the boys. “They’re doing fantastic,” she said. I told her I caught an overthrown hardball at Miller Park with my bare left hand and tossed it back. The young men on the teams cheered. “You the man.” One ran over with the ball, “Sign this.” I didn’t have a pen, so I bumped his ball with my fist. I told Lynne, “If I’d had a pen, I could have signed it as Dan Wilson. And the next time I saw him, I’d have to tell him his legend grew at Miller Park.” She laughed. “He’d have given it to you.” We paused. She took a deep breath, “I’m not sure I can do this.” “Sure you can. Your first job is get some sleep.” “I can do that.” She headed for bed in her clothes. “You should turn off the light.” She looked for it on the blank wall next to her shelves. “Lindy, I think the switch is by the door.” “Oh yea.” She walked away from the Facebook Portal screen and I saw the bathroom light turn on and off. She walked back to her bed and climbed in. I called out, “Good night.” “Good night.” I called the concierge who promised to have someone help her get some sleep.
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.”
7/18/20 Christine, an RN on Lynne’s memory care unit sent me a message that “Lynne was having pain and discomfort in her left foot and first couple toes, and she thinks she has a hammertoe. I approved treatment with their podiatrist scheduled for a visit.
I was pleased. Lynne has mentioned foot pain periodically during her stay and we had frequently alerted revolving staff in her old apartment. We’d traveled to Bellevue to buy new tennis shoes that she loved for CrossFit workouts. In her new memory care unit we alerted staff about her favorite tennis shoes and red clogs. Her red clogs were fashionable and easy to slip on. A nurse told me the heels on Lynne’s black clogs were unsafe. They were from a different manufacturer from her red clogs, so I bought black clogs that matched her red ones.
Karen had always helped with her foot pain because, as she said, “Lynne’s got my feet.” That’s a bad inheritance. Karen had four foot surgeries, none completely successful. I watched Karen struggle with hers and she managed Lynne’s. Lynne had a podiatrist who helped her.
I didn’t know if Lynne’s pain was shoes, a hammertoe, a bunion, other toes, pain from a prior surgery, nails or whatever. Now we had a podiatrist scheduled to deal with it.
7/22 A friend of Lynne’s sent me a note that Lynne complained about pain in her feet. Others had also told me she’d complained it. I assured her friend we were aware of it and a podiatrist was scheduled to visit next week. It seemed solved.
7/26 On Sunday night, eight days after Christine’s email, Lynne called in tears about missing Mom and “…they they think I’m crying like a baby.”
Ever since her move, I was getting these calls even though she and staff seemed happy with the move. She was more engaged, perceptive and helpful. However, her medical care assessment indicated her mood swings were still severe. I focused on that becase I believed she was improving. Her moods swints were natural when adjusting to a location.
Over a series of emails and calls staff and Lynne’s sister and brother convinced me her sadness and anxiety are severe. She was facing residents whose minds and bodies were in worse decline. She had said, “I’m afraid.” Counselors at Aegis told me, “This is the hardest time.” We talked and I finally got a few laughs out of her. At the end I asked about her toe.
“Oh, it comes and goes.”
“How about now?”
“It’s a go.”
“Is ‘go’ a hurt, or doesn’t hurt?”
“Oh, it hurts.” She was in her black clogs, which was often when she complained. Why? They matched the red clogs. I was frustrated. I thought we solved that. Eight days and nothing changed even with a podiatrist visit? What did I have to do to stop it. I decided to calm down before venting and write this email in the morning.
7/27 6:53 am “I’m not sure who to write to, but I want better care for Lynne’s toe.
Even after all this time we’ve worked on her toe, she called last night because it hurt. I get the feeling that caregivers who dress her are not fully aware of the pain in her foot and which shoes she should wear.” I added that I highly respecdt their care.
7/27 The Medical Director responded that the podiatry visit was rescheduled because of a new lockdown from COVID-19 infections in Lynne’s memory care. That explained why Lynne felt such tearful loneliness Sunday night—nobody was there to talk to when she leaves her room.
7/28 9:35 am The next morning I emailed Duke, the general manager, copying the other managers. I used Ben Franklin’s technique of asking questions rather than ranting. I asked:
“Why wasn’t I informed Lynne didn’t have a visit from Podiatry?
“Why don’t we have recommendations to limit Lynne’s options for shoes that work with her current pain problem? Why isn’t there an understanding somewhere in the room, or reports, that Lynne has ongoing toe pain that needs to be monitored by everybody?
“Who should I count on for communications about her care?
“I’d like to have an explanation of her pain and her treatment as well as guidance for dressing her.”
Shortly after I sent it, Lynne called me through her portal because she was lonely and her toe hurt. I called the concierge and asked him to get someone up there to help. Very soon a caregiver arrived who took off her black clogs and put on blue tennis shoes.
Almost immediately a new care giver arrived, Renaldo (not his real name), under orders to examine her feet. As I listened through the portal, Lynne explained she had surgery on her right long toe and that’s where it hurt. He kept questioning and listening to her. He comforted Lynne. He comforted me. A med tech arrived with pain medication.
Renaldo left and came back after reporting to Sheila. Boy, was I uninformed. Lynne had pointed to several different toes on both feet as the source of her pain. He had squeezed every toe and checked every nail – no pain. He asked Lynne to show him which toe had the surgery. He squeezed it again and Lynne didn’t react.
Renaldo, Lynne and I developed a plan to replace her clogs. Lynne liked flip flops even though both of us recommended open toe sandals as an option. I gave up and ordered two different cushioned flip flops. They cost a lot less than black clogs.
Renaldo mentioned foot baths and Lynne said she loved those. So I splurged on a foot soaking basin and a supply of tea-tree-oil-foot soak with Epsom salts. If staff could keep her feet in that tub, she and all of us would feel relief.
7/28 12:29 pm Sheila thanked me for sharing my email to Duke and sent me a plan that shared my email with caregivers, required caregivers to report signs of pain to med techs and nursing, and reminded them Lynne must wear footwear that doesn’t rub her toes. The clogs were removed from her access.
Wanda called and introduced herself as the direct manager of her caregivers. They expect to receive COVID-19 test results in a day or so and be able to schedule podiatry.
8/1 Wanda sent me the attached photograph of Lynne loving her foot bath. She loves the flip flops.
8/2 Last night was I wondered why I was inattentive to her pain? Why did I brush aside comments from friends without looking into it more? How long did I let her suffer without finding relief. I reviewed my emails and realized I was focused on her severe moods and cheering her up. I felt staff was caring for her feet.
I’ve got to be more attentive and assertive about her pain management, actuallly all of her care. I knew that. Why do I have to remind myself of that at 79 years old?
Lynne and Dad dancing to Lyle Lovett on her Alexa echo.
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.
A caregiver was infected with the coronavirus when they worked in Lynne’s Life Neighborhood memory care floor on June 22. The caregiver tested positive on June 24. Today, June 30, a test team arrived to test every resident, caregiver and visitor on the floor who might be infected. We do NOT know either how long it will take to get results for all the tests, or how long Lynne might be quarantined based on the results of everyone on the floor. Nor do we know what would be done if residents on the floor or caregivers are infected.
We wait and are thankful. We are thankful that Aegis follows strict health protocols to limit the spread of the virus and Lynne follows them. Weeks ago this floor had a resident infected by Covid-19 and no one else became infected. We are thankful health care workers are continuously reducing the severity and length of symptoms and improving recovery rates. We are thankful for your prayers and concerns.
Lynne called last night at 10 pm, melancholy without tears. “Not sure if I can do this.”“Sure, you can. Your Grammy Helen did it. Once you get through this part, you’ll be happy. Grammy Helen was happy.”
