I received a care call after dinner last night from Luna, the Director of Operations at Lynne’s assisted living. She says, and most staff say, caring for a family caregiver is as important as caring for each of her 120+ residents. She wanted me to understand Lynne is much improved since our drive her last Monday. She ate her full meal. She is agreeable, not aggressive; calm, not anxious. She sleeps better. Her feet don’t hurt. She likes her shoes. She helps residents but worries they don’t respond. Luna said, “I say, ‘Lynne, you have to remember, they have dementia.’ Lynne says OK and continues to help. It’s a marked change.”
The Boys and I saw similar responses an hour earlier in Outdoor Living. She welcomed me with a strong hug. She giggled to see them, talked, remembered, laughed. She wants the Boys to visit her room. The boys want to. We were encouraged.
She was excited about a thank you card, but when she read the cover that said ‘Cougars,’ she said, “She’s from Washington State.” When we left had to remind it was her card.
She remembered a South Eugene high school friend who contacted me. The friend had a riotous time with Lynne at the last reunion and plans to connect with her. The Boys reminisced with her because she took them with her for one of their driving trips.
Staff are eliminating tranquilizers to get a new baseline and phasing in new ones, but Luna didn’t have the details. She promised information about her medications when she went back to work.
Let’s hope she is comfortable in the baseline and any replacement medications help her felicity. We know Luna’s care call helped my felicity.
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.
We are still stumbling forward on her footcare. Last Thursday with her sons Lynne told us her right foot hurt. I took her boot off. When I walked her inside she had put her boot on and zipped it up. She’s persistent and inconsistent. I decided to replace the boots.
Lynne wore socks in her Velcro shoes and brought her boots to the shoe store. When we took her shoes and socks off, the heels and ankles on both feet were bleeding.
The store owner stopped the bleeding and put band aids on both heels and ankles of her feet. The owner refunded the boots because they were inflexible for the foot size she wears. We bought new socks for her black shoes.
I was furious about the bleeding and wrote an email that her foot care is unacceptable.
Pam said bleeding was completely unacceptable. Keith said, “Pops, this isn’t Aegis fault. New shoes and no socks make no sense. Of course, she is going to blister. Wearing socks just needs to be the new standard. She needs comfortable shoes and socks.”
Luna, operations manager, (not her real name) set up a family conference on foot care and medications. Luna acclimated us to the new world of Lynne’s moods. She gets frightened, anxious, aggressive, and angry. Once she gets angry, there is no talking her down. She will not stay alone in her room more than a few minutes. Staff calls to cheer her up with calls to me, friends or family work until she hangs up and reverts, which explains why I‘ve had fewer calls.
She walks constantly around the lobby where she can be observed, or where staff lead her to other areas such as Life’s Neighborhood, outside garden, and sixth floor outdoor patio. She says hello to people she meets. She won’t sit long enough to finish a dinner, so staff give her snacks between dinners. We’ll have to watch her weight. Luna warned us that their plan to eliminate her current medication for a baseline usually takes 30 days, and another 30 days to find a new level. Luna noticed she leans to the left when she walks, which may mean an inner ear infection. She’ll have nurses check on her.
Then Luna reviewed the condition of her feet and shoes. Lynne pulls off her shoes and socks and puts them on perhaps 30 times a day. They can get lost, so Luna says she has a black marker to write the name on the shoes. We need to replace those shoes every 6 months. Luna said the reason Lynne had blood on heels was because she had blisters from wearing the boots without socks for two days and then wearing them other times. The blisters ruptured on Friday when we took her to the shoe store.
Aegis staff, nurse and a podiatrist have checked the pain in Lynne’s foot. A nurse and the podiatrist used a technique of comfortably holding her feet while chatting until she’s distracted before pressing all toes, bones and soles. She didn’t wince either time. The X-Rays did not show any reason to cause pain.
Pam and Luna recommended we buy slip on shoes for the summer, so Pam ordered the ones she likes at the shoe store. Lynne liked the fit. She also liked how easily she slipped them on and off in the store. Afterward we drove around Lake Washington listening to Bruce Springsteen, which gave her time to take her new shoes on and off often. When we returned, the concierge suggested we put her names in all four shoes. His black marker did not work in her black shoes. So, he used a machine that printed stickers with her name. We pasted them on the leather and edges of the cushion with the hope the stickers will stay on as her shoes come on an off.
Caring for her distress is getting harder. Feeling her in distress is getting sadder. Doing the best we can do as a team makes it easier.
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 arranged an hour when friends and family would be ready to chat with Lynne and me for 10 minutes. We exchanged camera photos. Everybody enjoyed the voices and faces. Share your visits and spread the love.
I planned a cross-town trip for Lynne and me to Alki Beach. I made a playlist of the music at her birthday party. I expected we’d need a bathroom break half-way through, so I planned to be at the east side of Alki Beach where there would be some restaurants open with social distancing. Lynne buckled in and asked, “How do you like your new car?” “Fine I feel safer.” It’s a red Mazda CX-30, given a five-star safety rating by the National Transportation Safety Board. I bought it because Lynne, her brother and sister said it was too dangerous for me to drive my old car. They were right and I knew it. I would not have planned this trip with my old car. I started the music with I Want to Dance with Somebody I Love by Whitney Houston. We heard it three times before I switched to the next one. I think it stayed in her memory to the end of the trip. Lynne said, “I’m getting more comfortable about driving.” She spoke in complete sentences, not two words at a time as staff have told me. That was encouraging. Lynne sang along as I chatted about stories of her teaching days and how sad it was restaurant owners were losing money from shutdowns without economic relief. She was excited to see the historic Admiral Theater. We reached the west shore and as soon as we hit the eastern shore Lynne said she had to go to the bathroom. Luckily, we saw Salty’s on Alki Beach, a high-class seaside seafood restaurant and bar. It was spacious and empty. The concierge said, “Sorry, we’re not open until 4:00 pm, but you could get carry out.” He gave me the menus, which were not promising. “Do you have any non-alcoholic beverages?” “I’ll check,” he said. Apparently that was an unusual request. Lynne went in the bathroom and came out right away. “Did you go?” “Yes.” The concierge said they had ice cream and could make us a root beer float for $4.50. I splurged on two. Lynne went back in the bathroom and came out right away. “Did you go? “Yes.” We waited a while, probably while the concierge searched for the dessert chef to fill our order. I told Lynne to stay seated and I went to the bathroom. Lynne came in to wash her hands when I washed my hands. We went back out to wait. Lynne said, “OK, now I really have to go.” I wasn’t doing anything, so I said, “I’ll go with you.” She went to the sink to wash her hands. I went to the first stall. “Hon, why don’t you use this first?” “Oh, that’s where it is. I couldn’t find it.” I waited in the restroom to help any other woman who might come in. Suddenly I heard Lynne shout, “Oh, oh.” “Are you OK?” She quickly calmed me down. “It’s OK, I found it.” She looked at the sink as she headed for the door. “Aren’t you going to use the sink?” “No, I’m OK.” By that time that it was OK for me too. We waited by windows in the waiting area. The concierge came out with two floats in paper cups. I poked the straws in the cups as he showed Lynne an eagle’s nest in the woods, and a newer one close by. “We had two eagles when they were on the endangered list, but now we have five. I love to watch them. Enjoy.” She sucked her float dry, lifted the lid on the trash bin and tossed in her cup. She stayed by the window where she saw the back of a carved wooden statue, possibly Salty. She said, “He’s not moving. It must be hard to stand there all day.” I gave Lynne the leather bill holder with the tip to give to the talkative eagle lover. She liked that idea. She came back with it. She went back again and came back with it again. Together we found him and thanked him. As we headed up Madison she talked again. “I think I want to talk with somebody.” She was repeating Whitney Houston, enlivened by her chat with the gregarious eagle lover. A few blocks later, she said, “They might be watching a movie.” A few blocks later, she said, “I have to work on knowing when people want to talk or not.” I told her, “Lynne, everybody I’ve talked to says you’re an extravert. You know how to talk to people. You have to remember a lot of people on your floor can’t even talk.” We told the Aegis concierge Lynne wanted to talk with some people. The concierge said she definitely would do that. How could we create the same secure feeling with music and scenery to reduce anxiety and increase connections for loved ones with dementia? I ache in my loneliness about her loneliness. I tell myself to celebrate a safe, secure, loving time — a time to dance with somebody you love.
People in late stages of dementia can relive memories wrapped in their five senses and heartwarming emotions. Those are the best times for Lynne and me now. I’d like to learn more ways caregivers can help loved ones relive those memories. Recently, she was snug in the front seat of my car listening to Neal Diamond music and singing his lyrics as we drove through a rainy night. She looked out the window at parks and restaurants in her Madrona, Leschi and Capital Hill neighborhoods, interrupting her singing to briefly comment on the scenes. On a video chat she listened to me read every word of Sharon Olds’ poem, First Hour. It’s about a newborn’s thoughts. I told her that and when I finished she immediately remembered holding each of her three newborn boys. I, we caregivers, want ideas to reach deep into more of those memories so we can relive them in restricted, confusing, anxious times. I have read recommendations about how to assist Lynne’s behaviors when I’m with her. She opened a back door of the car to sit on the lowered seat, but said she couldn’t get her legs in. I guided her into the passenger seat. She quickly tangled her neck in the seatbelt until I clicked it in for her. I’d like more training on drawing out the deep memories, especially when I can only care for her on a video chat or sitting alone with her, even then unable to touch her without gloves and a shield, let alone hug her. What senses and emotions help draw out pleasant memories? In the car, did feeling snug in her passenger seat relieve her anxiety and let her focus on the scenery? Was it the music? The lyrics? Me by her side? With the poem, did it help to feel secure in her favorite chair? Me introducing the poem by talking about newborns and mothers? Dad’s familiar voice? The flow of the lyrics? I search for connections to memories by watching, listening, asking and showing her pictures to see what settings, words, images and names excite her senses and emotional experiences. I need help. And I confess I feel pressure because her reservoir of memories is draining away rapidly. Can I get help from our worlds of virtual reality? Lynne had a fabulous time with friends at a Lyle Lovett concert two years ago. Could she wear virtual reality goggles and earphones to sing and dance with fans and friends at concerts like Madonna? Could she dance in sock hops on reruns of The Dick Clark Show? Could gaming programmers develop videos for people with dementia where they could hug avatars instead of zap them? Could exercise equipment manufacturers mimic virtual scenery while residents exercise on stationary bikes? Could we collect videos from family and friends to rerun in endless loops like TikTok videos? Could we download YouTube videos? There must be people who could recommend more ways to raise up Lynne’s memories for us to enjoy in the present Covid restrictions — experts for caregivers, architects for room and building designs, owners of assisted living facilities with lively experiences from households or neighborhoods. Please help.
Lynne & a caregiver called last night. I said, Do you want to hear a poem? I have Billy Collins book, 180 More. It’s First Hour, by Sharon Olds. Yes It’s about a newborn’s first hour before being taken to mother. I read it. She listened. Do you remember when they laid your twins on you? She rose into a smile. Oh yeah. Skin on skin? Yes Did you hold them in each arm? No, I kept them separate Do you remember Christoph? Oh yes. I worried about him Why? The Girls. Soon she said, Well I guess I’d better go now Ok, well I have more poems. 179 more, so call any time OK, Dad
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.