A week ago I received a report that the pain in Lynne’s left foot showed great improvement: she was wearing the black shoe I bought in a little bit bigger size than her other shoes, her fluffy socks that were in the drawer instead of tight pull-ons, and a bandage on the bottom of her foot staff. Staff said she had left it alone. The swelling had gone down. For the hour I was there she never once winced in pain or tried to work with her foot or her shoe. I hand fed her bites of mini-Reese’s peanut butter cups. She drank all of her Frappuccino so fast I switched to water, but she made an ugly face and looked at me. I apologized. She nodded her head.
I finally said I had to go. She said OK. I felt good when I left her in her reclining chair with a peaceful face. On the way home I thought of what her life was like after I left. Did she spend hour after hour dozing in that chair? Did she strain against the invisible barriers that weigh her down, confuse her, anger her, and terrify her, hoping to break free to find human touch, connection, clarity, love, or meaning?
That night I listened to Let It Be by the Beetles, over and over and over, hoping for an answer.
When I find myself in times of trouble
Mother Mary comes to me
Speaking words of wisdom
Let it be.
And in my hour of darkness
She is standing right in front of me
Speaking words of wisdom
Let it be
And when all the broken-hearted people
Living in the world agree
There will be an answer
Let it be
For though they may be parted
There is still a chance that they will see
There will be an answer
Let it be.
And when the night is cloudy
There is still a light that shines on me
Speaking words of wisdom
Let it be
Let it be, let it be
Let it be, yeah, let it be
Whisper words of wisdom
Let it be
I had heartwarming caregiving yesterday afternoon with Lynne, an experience I am convinced she enjoyed as much as I did. I also found out I had checked up on weight later than I did.
She welcomed me in surprised relief with a hug so strong I had to brace my feet to keep from tipping over backwards. At the same time, her body felt thinner, triggering my worry that I had not check with caregivers about her weight and whether she getting more than the traditional portions. We strolled back to her room where I told Alexa to play music from Elton John. Despite Rocket Man soaring in the room, Lynne sat quietly focused on the floor more subdued than typical. She quickly sucked up apple juice and we opened the picture book of our trip to Alaska. Soon, she had the energy to aimlessly roam out of her room to the general meeting area. I suspected the sugar had picked up her mood.
We sat at a table where a caregiver thoughtfully stopped to tell me she was doing very well with help getting dressing, bathroom, shower compared to earlier resistance. I asked him how much she weighed and how often they weighed her. He left to bring back a chair with a scale on it. Lynne willingly climbed in and weighed 126 pounds. I said she weighed 134 when she entered, so she’s lost eight pounds in a little over a month. He said she eats everything, so I explained she had double portions because. He said, “She’s like an athlete. Exactly what I wanted him to understand. A Med tech joined the conversation. After the same explanation the MedTech said that she would make a note in the file to feed her more. I felt pleased the caregiver and MedTech responded immediately to get the scale and make a note in her file. And got over my guilt at not paying attention.
I told the receptionist about the good meeting and she asked if I had told the general manager. No. Well, he’s in his office so you should go tell him. When an experienced receptionist tells me to talk to a manager, I do it.
We had met when he interviewed Lynne at Aegis where assured me she would get extra portions, adding they have no limits on portions. I had not known what I was going to say because it’s delicate to tell him he and his staff were not feeding her enough, but by the time my butt hit the chair I said, “I want to talk to you about a fantastic experience with your staff.” He thanked me profusely and turned to send a note to the staff and head nurse when I got up to leave.
I believe Lynne enjoyed our experiences getting energy from treats and help from caring people. I saw a sparkle in her eyes before I left, and she casually accepted our time was over. I always wonder if she enjoys our times as much as I do, and she enjoys them as much as she did long ago before she was diagnosed. I believe those visits can make feels normal with me, her dad, her sons, and her friends like Nancy. I pray I am right.
On Thursday, September 1, we added sons Herik and Simon to be durable powers of attorney for Lynne. Afterward, we moved Lynne to a new home at Quail Park Memory Care.
Henrik and Simon agreed to be co-DPOAs if I was unable to perform. A Notary had to be convinced Lynne understood the changes and approved of them by signing the documents. I believed she understood and wanted the changes, but wondered whether she could sign the documents. If not, Lynne would have to convince the Notary to sign for her. So I enlisted the help of Nancy, and friend LynnR, to help Lynne get approval and be witnesses. They have had consistent success enlivening verbal statements from Lynne.
I had prepped Lynne the night when we had walked the halls. I asked her, “Do you want Henrik and Simon to have powers of attorney to help Dad take care of you?” She listened but kept walking. Five minutes later I asked her the exact same question, “Do you want Henrik and Simon to have powers of attorney to help Dad take care of you?” She listened but kept walking. I asked her the exact same words after another silence. She immediately said, ”Yes.” I texted Nancy to give her the exact words to use.
I had wrestled with questions the night before. Could Nancy and Linda get her to the building? Would she sense something and resist? Nancy had told Lynne she would be moving to Quail Park and drove past it. I had promised her night after night, “I was going to get you off this floor.” She always accepted it in silence. Would she resent being in a different setting? Would she miss the staff who had told me for two days they would miss her because she was a caring, active, courageous person?
On Thursday morning Clemens, Simon and I met in Lynne’s room after she had left. Clemons and Simon broke down Lynne’s queen bed for shipment to her cousin. We loaded all of Lynne’s clothing, teddy bears, dolls, painting, photographs, and toiletries and drove to Quail Park to get there before Nancy and Lynne arrived so we could prepare her room. Lynne had arrived before us. Nancy and LynnR kept her entertained while we hung up her photos, placed dolls and teddy bears on shelves, organized her clothes in her dresser and closet, and hooked up her echo so Alexa could play music for her.
“Oh, by the way,” Nancy turned around to say. “Lynne signed the documents.” I was ecstatic for Lynne. She was still in control of her life and we had made her feel that. What a glorious satisfying feeling that was for me.
She ate lunch with Simon and me and then watched a TV program with other residents in the TV nook. After a couple of hours Lynne began to get anxious and aggressive. We called for the Heard Nurse who met with Simon and me about her care. She indicated Lynne was following a normal pattern. A visiting physician would provide advice on medications to continue calming her. The head nurse usually doesn’t recommend family visits soon after the move, but Lynne , so the nurse encouraged us to continue because Lynne welcomed visits from all of us
Today is Monday as I write this and Lynne continues to progress through the ups and downs the head nurse described. Nancy, LynneR and I have had to remind staff Lynne needs puree’ food, medicine crushed in puree or Applesauce, pants that stay on, and pain in left foot from sores. At times she has vigorously resisted help getting clothes on and going to the bathroom with caregivers she does not recognize. I helped Lynne permit a caregiver to take her shoes and socks off to change her pants because they needed a belt.
Lynne and I rested on a quiet patio Monday afternoon as she sipped on a Starbucks Frappuccino. I said Quail Park was in a quieter neighborhood with less construction equipment, trucks and sirens. Care would be better, the residents on the floor were more tranquil and fewer of them. She ate a nice full lunch. I walked up the street and bought her a belt for her pants and looser socks for her feet.
Nancy called to say their visit was similar, but Lynne needed new shoes. Then she said, “Oh, and I asked Lynne if she liked it. She said, ‘Yes I like it.’”
These are glimpses of the joys in my life for the past week as a caregiver for Lynne.
I started a TikTok account after being coached by my grand-niece who is employed as a professional TikTok specialist. I planned to show multiple videos of Lynne’s face each time she saw me. For practice I videoed her at a table, another movement, then another. We got up to walk and then sat back down. As I recorded her expressions at the table I told her I was videotaping for my TikTok account. She pushed back her chair and pushed away my camera. “I don’t like this. I don’t like this. I’m not doing this.” When we walked in the hallways she seemed willing to let me take distant videos. I posted one of her walking past the open door of her apartment and discovering an easygoing friend hiding behind the door. Lynne said, “Oh, it’s Allie.” Allie peeked around the door to look at me. “Yes, I’m Allie.” I have not posted the rest of them. I have not learned to steady the camera. Her sister Pam says I need a holder and will give me one for Father’s Day.
Lynne grabbed her pants. “I really have to pee.” I got someone for her. We walked the hall afterward. As a concerned parent, I asked, “Did you go?” “Yes, good thing.” I chuckled, “It is a good thing to pee.” She swung her shoulders into me. “Shush, Dad.” “Why can’t we talk about peeing?” She laughed.
We walked side by side down the hall side when she veered near a pillar forcing me to head right for it. She kept veering so I bumped into it face first. She just laughed, shook her head, and walked on.
With a radiant face she pointed at a MedTech. “That’s Chester. He’s smart.”
She was at the end of a hallway walking toward me past a man in a wheelchair. She pointed at me and told the man, “That’s my dad.”
She liked the Frappuccino I poured into her doubled sized, “Slow down” coffee cup. She held the cup and straw to her lips several times until she drained it. Afterward Chester placed a bowl in front of her filled with ice cream covered in rivulets of chocolate sauce. She spooned bites into her mouth, one so large I was prepared to catch whatever did not make into her mouth, but she bit it in half and returned the spoon with the other half. She emptied the bowl without spilling. Chet and I agreed we could be making progress to maintain her weight.
Her hairdresser stopped me in the hall with a worried look. She had washed her hair and blow dried it, after which Lynn decided that was enough and walked away without getting it flat-ironed. “I didn’t charge her. I need your help.” I forgot. Every other Monday I have to entertain Lynne in the chair of her hairdresser to get through it. We set an appointment for next Monday when Pam could help both of us.
I’m blessed, we’re blessed, and now you’re blessed with these memories.
Lynne has had an active life since her last hospice assessment a month ago. Friends, Patricia and Terry, from graduate school at Seattle University, were able to make their first visit. They had to overcome some reluctance because they had not visited before and were not sure they could make her comfortable. Patricia wrote me about their experience. They did well as you will see from their story.
“It was lovely to see her and how much so many people cared for her. I was deeply moved and saddened by her condition. I could feel how much and how many people love her, especially you, Jim. We had a few moments of connection and recognition. I think not seeing her every day [makes me wonder] if our visit made a difference in the quality of her life. I hope it did.”
Patricia and Terry put her in her crimson pearl ¾-length coat and walked her around nearby sidewalks, but did not think it was very far..
I responded, “You may not consider that very far, but I think she probably did walk quite a ways. I like to learn what she does when guests come over. You made a difference in the quality of her life by being there, compared to when she is left alone. When she’s more connected, she’s in a far better place.
Last Sunday, Edith, a dear friend for decades, came up from Bend, OR to join Nancy and LynnR. This is Nancy’s report, edited for brevity and clarity.
“We had a really nice time. Lynne was really emotional probably the first half an hour we were with her. She was going through real interesting cycles from anger and sadness; and hugging us real hard and pushing us away like, ‘Get away from me.’ So we gave her an iced latte, and I think that helped her a little bit.
“But the main thing was we got her outside and then she was quite happy, and we were able to take her for a good walk. Over time we eventually had ice cream and cookies and she rallied with those.
“On the way home she was walking and was singing with us. At the end we sat at the couches in main lobby awhile. Her neck was incredibly tight, so I massaged gently. Each of us gave her water and we talked for 1/2 an hour. She was very relaxed and calm when we left. It was one of those days where you kind of get a little bit of everything and we were really happy to be with her. “
Both sets of visitors were physically present, attentive to her behavior, sorting through the mystery of her disease, finding delight, getting participation and partnering with her to end up enjoying themselves. I am thankful they visited and persisted in caring for her as well as they did.
Today we had a nice surprise. After Keith was returning to Bellingham from a doctor’s appointment in Mt. Vernon, he pulled off the highway, cancelled appointments of his phone, and drove to Seattle to be with us. She was shocked with excitement to the face of her close brother show up at the dining room table. He took over from me to spoon feed her and we had a pleasant meal and walk. When Lynne turned around to walk away from us, we went back to my apartment and talked for two hours about her and helping ways we could help her sons deal with the disabling grief they are experiencing as they help care for their mother. I welcomed his experience on the help we need to give her sons.
Last Sunday Lynne had one month follow-up on her weight, which dropped from 117.4 to 114.8 pounds, a slower rate of weight loss. I texted the nurse and she wrote an order to add a 4th booster every day, but added, “It’s so hard to keep her weight up with her walking.”
I remain overwhelmed with gratefulness for the caregiving team which supports us all.
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?
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.
Two days after nothing could go wrong about moving Lynne to Life’s Neighborhood, Skylar, a caregiver on the night shift, called me at 9:00 pm because Schmitty the Kitty was out of cat food. She said, “Kim had noticed it a few days ago. Luna was going to call you, but I guess she forgot. I’ll go get some food.”