Nancy a friend of my daughter Lynne, sent me the book Female Firebrands by Mikaela Kiner, CEO of reverbpeople.com, and a Microsoft alumnus like Lynne and Nancy. Luna, the Care Director estimated Lynne showed her the book 20 times to open and read a paragraph. The subtitle is Stories and Techniques to Ignite Change, Take Control, and Succeed in the workplace. Lynne seems to doing that in her memory care unit. Thanks, Nancy and Mikaela Kiner
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.
Aegis reviews Lynne’s behavioral symptoms quarterly. Her sleep patterns were disturbed by the switch to standard time and the increase in nighttime. The medical director prescribed medications for longer and more regular sleep.
Lynne repeats herself, called looping, about every 30 seconds when she initiates conversations. She waits outside the care director’s office for her to come back rather than sit with other people. They’ve had another COVID case on her floor, so she’s in lockdown again. She often calls me to say it’s difficult.
I said recently, “Well of course it’s hard honey, you have a disease, Alzheimer’s.”
She said, “I do? Maybe that’s what it is.”
Now I use short sentences to tell her stories of current events, even the election, or long-term memories of her boys, her mom, her friends. If we meet in Outdoor Living, I’ll bring her a vanilla milkshake from Dick’s Burger’s. She thanks me, listens, comments appropriately, and searches for words to add something. She’s very pleasant most of the time. When her mind wanders after 20 minutes, I ask her if it’s time to go.
Lynne can still laugh, even at my jokes. “Lynne, everybody loves you. Everybody — well, maybe your little sister didn’t like you for a while.” “Lynne, you don’t have to wear a mask over your mouth while we’re on a video chat with me. I don’t have Covid.” Lynne liked a new headband Edith gave her. I thought Edith made them and called her, but she purchased six different headbands for delivery to me. I’m giving them to Lynne one at a time. I reminded her she was wearing one from Edith. She laughed. “That’s Edith.” Henrik and I bought her a pumpkin and Honeycrisp apples. She wants the pumpkin to have a smiley face. She likes fresh Honeycrisp apples, so I cut one into small bites for her. She ate them while we video chatted. She had to leave the chat to wash her sticky hands. I didn’t tell her Henrik and I picked them fresh on our annual trip to Bellwood Farms in Bellingham with Keith’s family. She called one day and said, “Okay, I’m not going to cry.” We turned on her echo to play Lyle Lovett and she got on her bike to pedal. She said that was better. I’ve added treats to Lynne’s daily Starbucks and trail mix. Friends and family send me books and I deliver them one at a time, because we have not been able to confirm she gets books sent to her address. She had Where the Lost Wander by Amy Harmon when Keith visited through plexiglass. She can read pictures better than words now. Edith delivered one, titled: This Book Is Literally Just Pictures of Cute Animals That Will Make You Feel Better, edited by Smith Street Books. She laughed and shook her head, “That’s, Edith.” I give Lynne copies of photographs of her boys and family. She says, “I just want to be with my boys more.” Luna, the Director of Caregiving, has fun with her. She said, “Lynne was sitting outside my door one day. I said come on in. She laughs a lot. One day Lynne told me she was done working for the day and was ready to go home. She is the number one resident caregiver at Aegis.” Of course, Luna and caregivers are having fun with her. That’s who she is. I loved her hearty laugh when we ate, sat, read, hugged, talked, celebrated, kicked a pink soccer ball, walked the neighborhood, or arboretum, or waterfront on Lake Washington. And I know caregivers are solving problems. Lynne ended another chat with, “Dad, I have to go now because I’m having a problem with my bra.” Luna told me she’s pulling her bra down around her waist. It makes her extremely uncomfortable, so Luna ordered two camisoles. Luna also alerted me that Lynne cycled through a conversation last week — eight to ten times in a few minutes. She’s started picking at her food. I tell myself it’s fair for Aegis caregivers to have most of the fun because they’re caring for her the most. I tell myself that when I miss her the most.
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?