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.
Two friends and I made inexpensive and simple changes in her environment that enriched the life experience of Lynne, my daughter with Alzheimer’s. They enriched me as a caregiver.
Dad arrived. Staff had propped open her apartment so Lynne could walk in and out. One of the residents was chanting loudly repeating a guttural sound in the dining room. His rants have bothered Lynne for months. Lynne was in the hallway past the dining room, bent over, hands on her knees, sobbing. She reached for me and hugged me. I put on her headphones as we headed to the lobby where we could walk through the dining area.
In the lobby she saw a staff member working in a room where I tried to guide Lynne. She resisted. No, I can’t go in there.
Lynne, it’s OK.
No. In her room. It’s not going to work.
She thrilled me. The change in meds seemed to make her more alert. We walked toward large leather armchairs where I pulled one in front of the other because her eyesight is limited to tunnel vision in front of her. I sat down. She eventually sat down on the other, face to face. She scanned the lobby, quiet with few people. She watched the cars, buses, and pedestrians. Her blue eyes landed on my eyes, then continues to scan more. She points at a 95-year-old resident with her walker. She’s a really ni … Lynne scooted her chair toward me. I scooted my chair closer, and her eyes brightened up a little bit, with part of a smile. The rapid improvements in her mood came from the change from the environment on her floor compared to the lobby without having to medicate her.
I watch every move as closely as I watched her as an infant, loving her as deeply as I did then, and intrigued by the mysteries going on inside her. Her body twitches slightly in her chest and arms. Her hands have mild tremors. She crosses and uncrosses her legs. Her lips are turned down like the sides of a steep hilltop
I repeated tunes in her headset four or five times if she was tracking the lyrics or the beat. She was thinking about something all the time with a running soliloquy that I did not interrupt. Oh. That’s right. Where? Wow. I remember that.Oh nice. OK. The walk more. (Whispered) I don’t want the …. There’s going to be a big riot, or a fire. Yeah. I need to go up. There. (she pointed with her finger and stood up.) Yeah, I think so.
She joined a conversation of two staff members in a standup meeting. When they thanked each other, Lynne said, Yeah, thank you.
I talked with several staff about the problems with furniture in the hallways on her floor because she cannot sit and rest, so she bends over and puts her hand on her knees to relieve the pain. The chairs are too small for her. She is afraid to sit down in them because she has fallen several times when she tried. She tenses strongly when two people assist her into a chair. I have given up trying to get her in my car.
Staff has opened her apartment door to at least let her sit on the bed. I re-arranged her room where she has a big armchair at the end of her bed with blankets and pillows on it. I pushed the armchair to the wall and useda black table chair for the blankets. Now Lynne has an open door to a refuge with a comfy arm chair. I urged a couple of staff to get a sofas or large armchairs in the hallways for resident rest stops. I asked staff on the second floor to check with the concierge if Lynne could wander alone safely in the lobby with healthier residents. She walks out of sight into the nooks and crannies on the second floor.
I am immensely pleased I had the time and the ideas to give her a little better life. I feel more meaningful.
And then I get a call from Nancy today. She and a friend took Lynne outside this afternoon for a fantastic time compared to the sedate visit I had with her. Wait until you read Nancy’s post on this blog about the fun Lynne had in their car, Volunteer Park, a donut shop and the Broadway market. Lynne reportedly commented on the young hunks strolling by compared to obsterorous octogenarians she’s running from. I was humbled and thrilled to hear the excitement from Nancy’s voice.
Visits witih Lynne can be hard when we see her less vivacious than our cherished memories of her. Understandably people are afraid to visit, including me, when I don’t have a way to cheer her up, so it’s easy avoid it. And yet her condition nags at us because we love her. I have learned that my times, or family times, or friends times, are always meaningful for the visitors, and almost always meaningful for her. They are meaningful for me and others because we tried to give Lynne a better time than she would have had without our visits. Below are stories of simple visits that demonstrate visits are almost always meaningful for her. Lynne told one of her friends told her to go away, so she did, and came back the next day to share a cheerful visit. Imagine how meaningful it was for Lynne’s friend to have the courage to immediately visit again when Lynne was glad to see her.
The good news is Lynne is more responsive and walking more upright since we changed her medications. Last Sunday friend, Lynn, sent me a message. I helped Lynne eat lunch and gave her a cinnamon roll which she ate as we walked outside. We laughed quite a bit and complemented each other on excellent hairdos. She was in good spirits. Obviously friend Lynn was in good spirits about her visit.
Her boys and Pam, my other daughter, saw improvements for an hour-and-a-half lately. She pointed at me and told them. That’s my dad. She pronounced the title on a poster: Mardi Gras. We sat in the lobby and talked. I called out a to resident close by, Hello. How many boys do you have? Lynne answered immediately, Five. I have rarely seen visitors with her. She sits with other residents in the lobby. They tell Lynne, You’re lucky. Your dad comes to visit you. I know those statements make her happy. They make me feel more meaningful.
Today when I met Lynne she was sobbing, tears flowed down her cheeks. She wrapped her arms around me, saying, She took it all. She took everything.
I pulled back and looked her in the eyes. Hon, I was just in your room. She didn’t take it all. It’s all there.
It is? Well OK. I lifted her mood and made me feel meaningful. I put on her headphones and backpack to hear the Sister’s Music list from her sister Pam. Lynne gazed up and nodded her head. She mouthed some words. Her body slightly swayed to the music. I was glad I brought the headphones and Pam sent a list. It kept her mood mellow. Pam and I both feel more meaningful about her music. I am grateful for Pam’s care.
I walked beside her, slipped my hand under hers and left it open. Sometimes she moved her hand away. Sometimes she let our hands touch. Sometimes she grabbed my finger, three fingers, the whole hand. Sometimes a grip. Sometimes gentle. It made her more connected, secure, stable. I felt more meaningful. I steered her up to the 6th, 5th, 4th, 3rd floors and the lobby. She studied photos revolving across television screens on every floor. She often turned to smile at me. We were both getting some exercise. I felt more meaningful. I waved to her when I left her floor before lunch. I felt I improved her feelings for a little while. I felt more meaningful. Don’t let fear keep her from giving her a more meaningful journey.
Lynne’s Aegis community is open fully for you to visit or take her out. A gentle reminder that all visitors will be required to show proof of receiving a COVID booster prior to entering and masks must be worn at all times please.
Lynne loved the sun on her face and closed her eyes for the sweet dreams she was having on Sunday when her brother and sister-in-law took her for a walk outside, after a long wait.
On Tuesday, January 18, our family enrolled Lynne in Hospice and Palliative Care with Continuum Care of Washington. The goal of palliative care is to help manage Lynne’s pain and reduce the side effects of medication required for her treatment. The goal of Hospice care is to treat Lynne as a whole and manage her symptoms rather than treating Alzheimer’s. Continuum will provide resources for medication management, skilled nursing care, medical supplies and equipment, and spiritual and emotional support. Continuum was recommended to us by the Aegis medical director based on their relationship with Continuum Care for current and former residents.
Lynne will remain in her apartment at Aegis receiving its current hospitality services with the added support from Continuum services already provided to current residents. A Hospice nurse will visit her once a week and a home-care-aide two times per week under the direction of a new primary care physician and liaisons who can assist us when we need more help. The Hospice nurse and home-health aide know Lynne and are excited to care for her, so Lynne should welcome the continuity in her new plan.
Continuum responded effectively and thoroughly since late last week to complete approvals and assign staff on Tuesday. We are pleased with the extra care Lynne will receive in her current stage and her new team. Continuum prepared a 90-treatment plan based on their current examination and will follow up with a second 90-day care plan, followed by successive 60-day plans.
Continuum accepted her for care because of concern for her weight loss, frequent wide emotional swings, and two epileptic seizures last summer. Continuum hopes their additional services could reverse her weight loss and stabilize her moods to permit taking her off Palliative and Hospice Care. Aegis staff confirmed other residents have been taken off. If Lynne is removed from Continuum Care, it would only be temporary because she is in the last stage of Alzheimer’s.
Lynne’s brother, sister and her boys support the extra services she will receive. Lynne continues to welcome phone calls and cards, and visits when we return to post Covid restrictions.
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 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.
Lynne called. You said I’d like this place I do. Activities, care, safe. Staff love you. You’ve got a hard job to walk — can’t remember, find words, figure things out. You’ve got to fight through it. You’re strong. You can do it. Where’s your smile? Everybody.. always loved your smile. You used it all the time. I was afraid you’d run out of smiles. I checked, though. You can never run out of smiles. Go give ‘em one of your smiles. Slight chuckle. You always make me feel better. OK. She stood up in a warm shawl, hair neatly parted, framing her face with a thin smile and walked out.
I can make her feel better, for a while. I can’t make her think better, ever. Nobody else can either, for a while.
Early before Lynne’s 2nd birthday party, she was crying, anxious, didn’t want to go. Why? Confined? Lonely? Isolated? Trapped? Embarassed? Caregiver Dorothy and I encouraged her. Dorothy escorted her. We had fun.
Aegis reduced its quarantine restrictions allowing caregivers to accompany Lynne on walks as many as three times per day. She’s active, so the floor supervisor gave her a fourth walk one day. Our family ordered a stationary bike for her room, where riding it would lift her spirits during Seattle’s oncoming cold, rainy weather and future lockdowns. She and staff were happy when I printed a picture for them. That picture lifted my spirits before it arrived. I scheduled an Outdoor living room visit where we could talk through plexiglass shields. I showed her a heartwarming video of a Labrador mother using her paw to protect her last puppy from being adopted. Lynne’s vision has declined so she used her finger to focus on it. “What is it? Is it mine? Is it a puppy? Is it mine?” “No, it’s just a funny video.” I wondered if she thought it was her dog. She stood up, disappointment draining the smile off her face. “It’s not mine?” She started to sob. She had said she wanted a dog earlier that month, but we had told her that wasn’t possible. “Honey you can’t have a dog up on your floor.” She sobbed as she stared at me and backed in and out of the curtains twice, sobbing harder. She staggered toward the front door and hit the windows again as she backed away from me. I stood up wondering what I could do. A caregiver came out quickly to comfort her as she guided her back inside. I told them it was about a puppy. I was sad and miserable. How could I have forgotten she wanted a dog? Very soon I got a text message. They had redirected her to the picture of the bike. “She’s fine now.” I was too. Caregiving is a long, bumpy ride.