When my mother was in the end stage of Alzheimer’s I believed she was blissfully unafraid behind a veil of ignorance about her disease. She had anosognosia, a symptom of not knowing she had a disease, which is different from denial. Lynne and I had hoped she would have the bliss of ignorance. Yet Lynne has had sixty days of Hospice care during which she has lost weight and trouble chewing food. She is aware she has limitations.
She has a strong sense of self relentlessly driving her behavior with meaning. She knows she is a sapient body in space with words like “I’, or “me,” or pushing Dad away. The downside is she wants to get her body home. She gets depressed, anxious, lonely.
She also values her virtues as a mother, educator, daughter, sister, colleague. She wields a slightly smug smile when I read her notes from a grade-school teacher, Lynne’s co-teachers, fellow recruiters, neighbors, and fellow graduate students. She glows when she sees her boys, together, towering over her, coming to care for her week after week. She responds to social communion with others who give her dignity, her worth as a person, valued, included, and not ignored. She feels pride when people compliment her on the streaks of gold in her healthy hair. She shows concerns about residents and embraces caregivers. Friends validate what she is feeling by amazingly walking her through Volunteer Park to eat a donut and people-watch at a market.
Lynne does not have my mother’s ignorance of bliss from Alzheimer’s. She has awareness for which she pays a price. In return she has meaning, dignity, and love confirmed and sustained by those who cherish her.
I hope I would have her valor and similar caregivers to sustain me.
When we went for our drive Monday she hesitantly let me buckle her in. I gave her a blue thank you card from a friend for the surprise birthday visit Lynne and I gave him. She said, “Oh look, he remembered my name.” I inserted it in a book of poems I bought her by Mary Oliver titled, Felicity, the quality of being happy. “Who gave me this, Nancy?” “Yes.” I don’t think she remembers I’m Dad when she sees me. She doesn’t call me Dad. She’s losing track faster than I expected, even though she has regularly dropped rapidly followed by stable periods. This feels like the last stage of recognizing people. I knew it was coming, but I am surprised how much I’m afraid. Karen and I cared for her until I lost her, forcing me into a primary focus on Lynne and a memoir to adapt to being a widower. I don’t know what I’ll do when she loses all recognition in steeper and steeper declines. Where do I find my purpose? Is writing her memoir enough? Caregiving is getting harder. At least we have car trips with a vanilla shake at Dick’s Burgers. I buckled her back into the front seat and set the shake on the roof above my back seat before I climbed in. When I remembered the shake on the roof I hoped it was still on the roof with my smoothly slow driving. It was gone and I needed to run through the car wash. I reminded myself to put drinks on the hood of the car, instead of the roof, so I’ll see it when I get behind the steering wheel. It’s worked for decades. Am I losing it? I recovered by stopping at Starbuck’s in Leschi for her favorite lemonade and iced black tea. She never missed her shake. IBesides, if she’d remembered it we’d have been fine. Karen would have reminded me. My drive was designed to place her in a sanctuary. I was mostly silent. She agreed to a playlist of her birthday songs and sang their lyrics. I let her rest, relax. My purpose is to stream experiences into her psyche she rarely feels in assisted living. When I drive she moves and sways. She effortlessly experiences cherry blossoms, yellow daffodils, an Orthodox church, playing fields, playground equipment, Montlake elementary, Lake Washington Drive, arboretum, children, horns, jack hammers, air brakes, dogs, cats, a dog kennel, the Coyote shop, the smell of coffee and ripples on Lake Washington glistening with sunshine under a blue sky over snow-capped mountains. The streaming experience is guiding her mind instead of me, staff, schedules, medications, meals. She is connected with me. She fingered the blue thank you card and rotated Felicity from front to back. She opened it. “That’s so nice of Nancy. I’m going to read this.” Speaking is easy, flawless. “That playfield is deep. The arboretum is beautiful. Look at the dog. Oh, there’s the dog kennel. That Cayote shop is so good.” At one point I reached for something near the gear shift and she slapped my hand with the blue thank you. Why? What was that? Was she warding off my hand? I know she’s been afraid and anxious, so was this an impulse to ward off somebody touching her? On our last hug she gave me a loose shoulder hug. Is she fearing an embrace because she is losing recognition of people? My purpose of the trips iis to give a sanctuary without the necessary demands of institutional care where she is denied, corrected, and redirected. In her sanctuary she did not ponder answers to questionanswering. She was not confused, anxious, lost, afraid, wandering, confronted, threatened, unsteady, alone, hiding, escaping, shouting, angry, aggressive, hopeless, useless, hungry, thirsty, tired, worrying, hurting, stumbling, or falling. Creating her sanctuary makes me lonely. I don’t tell jokes to hear her laugh, or praise her boys to get her joyous. Talking pressures me and and it’s not reaching her as meaningfully. I have become a bystander, a monitor. I know loneliness is normal in Seattle’s dreary winters, but I haven’t been lonely. I shared my feelings of loneliness with my son on his visit, and my youngest daughter on the phone. She was lonely because she couldn’t visit. I shared my feelings with three care groups, which is all I could work in. They all helped me. I had an epiphany: visit my daughter in Chico, California. She has been isolated, I have been vaccinated, we are lonely. She isexcited. I’m excited. It lifted my loneliness from facing another weekend alone watching players dribble in every basketball game I could record. I’ll hug my daughter, her husband, my dog and her dog. We’ll walk in 70-degree sunshine along a river running through the forest in Chico. We’ll talk about our writing. I’ll work on her patio. I feel guilty because I’m leaving Lynne in assisted living. I doubt I’ll tell Lynne I’m visiting her sister. She won’t miss me. We can talk by phone. I feel guilty about keeping it a secret. Telling her would make her sad. I worry she’ll discover I’m there. She loves to visit her sister. When I dropped her off, I turned to wrap her in my arms, but she resisted as if I was smothering her. She turned to ask the concierge for help with Marilyn. He reached out to touch her hand, “OK, say it again Lynne, because I don’t know anyone named Marilyn.” She held Felicity in her other hand.
I confess I’ve stumbled through caregiving for footcare for Lynne, my daughter, before I arrived at the present plan. Mt story should help anyone avoid my mistakes who is responsible for care for a loved one in assisted living.
My mistakes stemmed from my trivial footcare pain compared with the problems suffered by my wife Karen, Lynne, her brother and sister. I’ve never used special inserts. Karen managed Lynne’s foot care, so after Karen died in September 2019, I bought her shoes without understanding her particular problems. I only had two problems with my feet and solved them by reading a book. A stinging pain at the tip of my longer toes and littlest toes drove me to a couple of friends who went pain free after reading Paine Free by Pete Egoscue. a nationally renowned physiologist and sports injury consultant with 25 clinical locations nationally with hundreds of therapists https://www.egoscue.com/what-is-egoscue/history/ His approach is a series of gentle exercises and carefully constructed stretches to ease muscle pain. I’ve used the exercises in the book to relieve toe pain, back pain and shin splints. The toe pain disappeared as he said it would by walking barefoot around the house made possible by Karen’s spotless housecleaning. I bought loose-fitting lamb’s wool slippers, looser socks and footwear. I had shin splints when I moved into my apartment after Karen died. Egoscue recommends exercises and Pam told me I walked too long in the same hiking boots (well over 1,000 miles).
History with Lynne since September 2019: Obligated by compassion and undeterred by ignorance, I bought Lynne tennis shoes from an athletic foot store so she and I could walk around Green Lake and participate in CrossFit training. She could tie the shoelaces, untie them, retie them, and knot them. Staff advised me to buy new shoes with expandable laces she would slip on and off her feet. Those are the blue and white tennis shoes she wore to CrossFit and Aegis exercises for more than a year, which I probably should have replaced. Last summer Lynne said she’d like flip flops and staff recommended them for more comfortable summer shoes. I ordered flip flops that advertised a softer cushion. She liked them. Her feet didn’t hurt. Soon her feet hurt in one set of clogs but not in another. The brands were different, so I bought a pair of the comfortable brand with the identical size and a different color. A few months later Lynne said the clogs hurt her feet. This fall and winter Lynne complained her left toe hurt. Nurses pressed on all parts of her feet but she did not consistently wince at any spot. A podiatrist visited on February 22nd after which caregivers said the podiatrist treated the bottom of Lynne’s feet. Her report identified the patient problem was painful nails and calluses. She debrided the nails and calluses using aseptic technique without incident and all Lynne’s concerns and questions were addressed. After that visit Lynne complained to staff and me that someone hurt her. Someone cut her. Her foot hurt. She cried a lot, stopped for a while and cried again. I decided I had to prepare recommendations for a better foot care plan to stop recurring problems with Lynne’s foot pain. I asked for reports, contacted my family and scheduled an appointment with her primary care physician (PCP). An addendum to the podiatrist’s report indicated that she would order X-rays of her foot and noted that the patient may benefit from custom orthotics. The X-Rays showed no evidence of fracture, bone lesion, erosion, arthrosis, or injury. Simultaneously with her foot pain, staff were increasingly concerned by Lynne’s more aggressive, sorrowful, angry, anxious temperament they had not seen before, most likely a result of medications she was given to increase her sleep and relieve her anxiety. Plans were made to discontinue the new medications to establish a new baseline for her and have her evaluated for new medications. Pam and Keith supported a better plan for foot care. They have arch problems with their feet and said Lynne has arches that need support. They disagreed over whether she had special inserts for her feet before assisted living. Her sons and ex-husband don’t agree whether she had special inserts for her shoes. Lynne doesn’t remember. It was time to start anew.
Lynne and I visited her PCP who had referred her to a surgeon for foot repair years before. He said she had high arches and should see “podiatry and probably inserts would help and update her shoes.” He said her blue tennis shoes and flip flops were inappropriate. Why didn’t I know that?
Two days after that visit the podiatrist at Aegis who had debrided Lynne’s calluses called me. She, or possibly another podiatrist, had examined her feet in the last year. She said she could re-examine Lynne’s feet on the next Friday, to see if she should order custom orthotics. I asked why she hadn’t made that examination earlier? As I remember her answer, she said she was focusing on the pain in her foot.
A friend in our support group with Aegis has had foot problems for years. Her doctor told her to go to the owner of a comfort shoes retail store in the Capital Hill health district. She told the doctor she needed a podiatrist. The doctor repeated his recommendation to go to the owner first, because he would modify inserts and order special orthotics if needed. If that didn’t work he would refer her to a podiatrist. The owner modified inserts in her shoes without ordering special inserts and she’s bought new ones every six months for years.
Before I scheduled a podiatrist referred by Lynne’s PCP, I wanted to get the opinion of owner of the comfort shoes store. owner. He examined her feet carefully as he grilled me on the circumstances of her footcare. • The blue tennis shoes and flip flops were not appropriate for her feet. Why didn’t I know that? • Lynne takes her shoes and socks off and puts them on constantly. She loses socks and shoes. • Special inserts for shoes would mean rotating staff would be inserting and removing them when she changes shoes. • Special inserts may not work consistently in all the shoes she has. • Socks may or may complicate her comfort. A lot of people prefer no socks, and Lynne seemed ambivalent about it. She didn’t wear socks in her clogs. Nevertheless, the owner recommended she wear socks to see if they help because socks can be managed. • Lynne, Pam and Keith complained that Lynne’s 3 end toes are separating away from the big toe. Karen had the same problem with her feet. The owner said that was because Lynne’s arches slighted tipped her feet to the outside. He could glue a ridge to the outside of the insert in the shoe that would balance her feet better. • He increased the cushion in the shoe inserts to absorb the pressure from her high arches. • The owner and Lynne liked the black shoes we ordered, and he modified the inserts in the shoe, so they don’t have to be changed. • She wears boots for rain and for dress, so he fitted her for half-calf high boots that are waterproof up to the webbing above her sole. He did not have to modify that boot’s insert. She wore them back to Aegis, where I requested she wear those when she wants to dress up or walk outside in rainy weather. • I requested staff give me all the footwear Lynne has so they can establish a baseline of her comfort in the new black shoes and boots. They liked that because fewer is better. Lynne’s foorwear wardrobe had two sets of boots (one boot was missing but she says she knows who took it and will get it back), two sets of flip flops, two sets of slippers and her blue tennis shoes. I will save her footwear for a while, but I can’t justify why I saving them. • Since I was wary of Lynne wearing socks and shoes that are too tight, I recommended she not wear socks with her new shoes. I made no recommendation about walking barefoot.
This foot care plan was a work in progress so I recommended we evaluate it every six months if nothing else requires it. Two days later the night nurse required a re-evaluation. Lynne had some redness on the heel of one foot, so she recommended Lynne wear socks.
I confessed the next morning. “The no socks was my idea. The owner of the shoe store and every reasonable person in the world probably disagreed, so I was wrong. About her feet, again. Please put socks on her feet and keep correcting me. I can’t believe I hurt her feet again.” I got several replies of encouragement, but the most interesting were from her sister and her brother.
Pam: “You got the idea from me, too. She typically hates wearing socks. So, you don’t get all the blame for this one. 🙂 Sorry from me, too.
Keith: “Lynne notoriously never wore socks, I would say when she was wearing clogs, ‘How do you do that? She said socks made her feet feel icky.’ Love you.”
We celebrated at a party, a two-day Zoom party for Lynne’s 55th birthday. It was coordinated by her friend Nancy with participation from over 25 Aegis staff, family and friends of Lynne over the last 50 years.
They sent gifts to me, which I delivered and photographs to Nancy, who shared them on Zoom. Nancy collected titles of Lynne’s favorite songs and artists for dancing and singing with her, including a Congo line. We’ll create a new Alexa playlist for singing and dancing in her apartment. Aegis reserved a conference room for an hour each day and decorated it for a party. Caregivers sat by her side. She opened presents and ate cake.
The room had a massive TV screen so Lynne could identify individuals in the Zoom matrix as they shared how much Lynne meant to them as a friend, and often gratitude for her role in their careers and marriages. We saw her face light up over and over. We shared lots of laughter and dabbed at tears.
This celebration blessed me with gifts. I am blessed she welcomes me as her dad. My respect for her grows and grows, even bordering on awe, when I hear who she is as a sister, wife, mother, recruiter, teacher, lover, friend, and most rewarding for me, a daughter. At times like these, I am grateful for what she means to people, many of whom know her better than I do. Which makes me profoundly grateful for this community of caregivers. We are a community who care for her and for each other.
I couldn’t live up to her expectations if I had to care for her alone.
Lynne remembered her mother put up Christmas decorations every December 1. A favorite of Lynne’s was the Mrs. Santa Claus doll. Mrs. Clause was the first decoration of many I’ll bring during December.
Eric Larsen, MD Kaiser Permanente Health Research Institute says indelible memories in the first 20 years can be enjoyed the rest of our lives. “We should strive to treasure the miraculous ability of the brain to hold onto the past as well as it does.”
Christmas decorations from the family are a good way to do that in December.
Lynne and I wanted to give Aunt Jane a birthday present on her 82nd birthday. She is my sister and Lynne’s cherished Aunt who had the courage to throw off society’s expectations of housewives, and serve the under privileged. She lobbied for compassionate legislation for children with handicaps in Colorado, lived with children in impoverished orphanages in Mexico, counseled Guatemalan refugees who fled the genocides in Guatemala until she returned with them broker peaceful returns to distrusting survivors. Along with those missions, she inspired her entire family to reunite and embrace her independence. I gave Lynne the phone so she could sing happy birthday to her while I shouted it through the plexiglass in the Aegis Outdoor Living Room. Then Lynne had a private conversation with her. Jane is a talker. Lynne is a listener. She focused on every word. I heard Lynne’s responses: “Oh, yeah.” I’m not sure.” “Well, I have a lot of friends here.” “It is what it is.” “I can see family.” “I get out and do things.” “I’m never sure.” “They have us do things, you know.” Suddenly Lynne said, “Oh, no!” She put her hand over the phone and said to me, “Cat broke her toe.” Cat is Lynne’s cousin, a nurse. I asked, “Is she still working?” “Oh yes.” Finally, she tired and handed the phone back to me. Jane said, “We had a great conversation. She’s handling it so well, accepting what is.” And that inspiration was another gift Lynne gave Aunt Jane. And me. And everyone.
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.
Ten minutes before an afternoon business conference call yesterday, I phoned Lynne’s Portal. She answered in her fuzzy sky-blue cotton sweater. She picked it out at Aritzia before Christmas when we shopped at University Plaza for her surprise Christmas present. “Tell me about your day.” “It was fun. I like it here. I feel like I’m one of the crowd.” Some of the people were still a stitch, though. I asked if she ever says, “Alexa, play music.” She said, “Alexa, play music.” Alexa filled her apartment with a hit from her high school days. She laughed. She was overjoyed. On impulse I told her my birthday was tomorrow. “It is? We’ll have to do something.” She had to go to the bathroom. I had to hang up. I called the concierge and asked if someone could help Lynne give me a birthday present. He liked that idea and would work on it. I scheduled a video chat when a caregiver could make sure Lynne was there. On her floor they only schedule two per day at 11:00 and 11:30 am. 11:00 am was available. I didn’t tell him my son and his family are arriving after lunch. Maybe I can add them to my video chat with Lynne while they are driving. Late that afternoon the medical director phoned about my email regarding Covid-19 testing. They had a professional team test every resident and caregiver in the 124 apartments on six floors. She observed every test. They hoped for results in 24 hours or so. We wait. To celebrate.