The other day Lynne was watching a movie in the dining room. She didn’t respond to rubbing her shoulders and hearing “I love you.” I gave her a color photo of her graduating senior with his brothers boys and me. Her face softened when she saw it. She stared at it. Looked at the movie. Looked at her photo. My inner voice said don’t disturb her. I walked the loop on her Life’s Neighborhood floor. Ten minutes later her seat was empty. I caught up to her. She walked with head down, short steps, slowly, constantly. The photo was gone. A caregiver put it in her room for later. I put my hand under hers and she held it slightly for a while, then dropped it. I stopped touching her, respecting her space.
She cannot hold her head up, so she looks at the floor lost in thought. She has a smaller smile and fewer of them. She listened to my lengthy story with pauses between each sentence until I hesitated to organize my thoughts for the last sentence. She grew impatient. What happened? She anticipated an ending. She probably worries about my memory.
She worries a lot. She walks her floor from the door to the garden courtyard past the elevators to the edge of the dining room. She says, I have to stop here. She does not like to sit with the people in the dining area on her floor who spend most of the day listening to music, an activities program, or the big screen TV. She turns around to start another loop. She likes the help from caregivers in the entire building. She likes bus rides to gardens. She was the only resident who walked in the Woodland Park Zoo Rose Garden.
She talked as she walked lost in thought. I shouldn’t be here. You’re just like everyone else. You and Dad are the same. She grabbed her pants and said, I’ve got to go. I ask where? Home. We kept walking.and talking. Can we leave now? That woman (named) is a piece of work. That man scares me. They’re very strict. I should not have told them. Her voice got softer and softer until she spoke to the floor in a barely audible voice. Finally I said, “Talk louder, Hon, I can’t hear you.” She said clearly, Sorry, but returned to her inaudible voice. After 45 minutes I said I had to go. She nodded. I turned around and she walked up to a caregiver. .
Lynne’s Aunt asked why I did not send an invitation about Friday video chats, so I decided to update everyone. I did not send an email because she had more visits than video chats. She enjoyed the visits. In the last video chat, she was unable to sit longer than ten minutes. She walked around the room while I my unsteady hand made her bounce in and out of the video. If someone wants to try a video chat, we could schedule a special time. Her sister wants to try. We’ll see.
The progression of behavioral deficits from Alzheimer’s is organized into seven stages on the Functional Assessment Staging Test (FAST). Her behavioral deficits have declined to the bottom of Stage Six, Moderately Severe Dementia. Her mental age is 2-4 years old. In a few months she could slip into the final stage, Severe Dementia, where she would slowly lose the ability to say any words, walk, smile, sit up, or hold up her head. The last stage lasts 12-18 months.
Lynne’s youngest son graduated from Garfield High School Last night. He’ll take two courses at Seattle Central College this summer to complete his Associate’s’ Degree. This picture drew a broad smile from Lynne when I visited her after the ceremony. #Alzheimers #Alzwa #alzauthors
Lynne and I meandered on a path along Lake Washington last week. I explained my snack system to build up my strength.. “After mid-night I cut a banana in three sections and put two sections in the refrigerator. I slice the first section into small bites covered in chunky peanut butter, and do the same with in mid-morning and the afternoon.”
She laughed. “Dad, stop. That’s too many bananas.”
I don’t think it’s too many. I think it’s clever. I reward myself after writing by eating protein and sugar in healthy doses. I’ll keep it a secret.
Lynne was concerned about a man on her floor. I promised we’d take care of it. When we returned I reminded the concierge to get her dressed on time for the free photo shoot with her son in his high school graduation robe.
The boy’s father canceled that afternoon because their son wanted to take the photos at the graduation ceremony. I told the concierge to cancel Lynne’s visit. He said, “I’m not going to tell her, and hope she doesn’t remember and get disappointed.”
The excited caregiver on the floor didn’t cancel plans either. She bathed her, brushed her hair and curled the ends, put her in a black sports bra under a deep V-neck full length black and white polka dot dress in her comfortable black shoes. She felt pretty.
The concierge called. “Lynne is dressed and ready to go.”
“I’ll be right over.” What was I going to do? My inner voice rescued me: “Drive her to the boys home because they canceled it. They’re going to rescue us.”
The boys were surprised. Tucker whirled in his circles to catch his tail. He barked and pushed his head into everybody as the boys yelled, “Stop, Tucker. Sit. Tucker! Tucker!” The graduate disappeared and reappeared in his robe with mortar board and tassel. We took pictures and pictures on the sunny back patio.
Time for ice cream. The oldest said, “I can’t go. I just got back from work. I’m too sweaty.” Everybody else disappeared to get dressed and head out the basement door. The oldest reappeared in a clean pair of sweatpants.
It was cold for ice cream. Her graduate zipped up Lynne’s red jacket. The posters listed ice cream, sorbets, sundaes, sherbets. The boys said she had two favorites: scout mint and salted caramel. She ordered scout mint and I ordered salted caramel to share. I warned the boys she will eat the ice cream non-stop and get brain freezes. They took turns feeding her and talking with her.
She told the concierge she had a great time. He told her she looked pretty in that dress.
5/31, Dear Susan and Karin, I haven’t thanked you for visiting Lynne last week. Of course, it seems to make no sense for me to say thanks when you visit a friend and have a good time. So why do I feel grateful and how should I say it?
It makes me feel good when someone is there entertaining her with a different interpersonal relationship than I have. I ache when she is alone and I am not going to see her. I urge myself to go more and I do what I can, always knowing I could do more if I didn’t have other things I choose to do in my life. So, I relish times whenever friends care enough to make a special effort to see her. I feel less guilt. I feel more supported.
Also, I like to hear exactly how Lynne responds and how you and other guests respond. I learn from your, and other, visits, get ideas, try other things. I can report other experiences on the blog to encourage other people to visit.
Many, I think, fear coming to see her because they feel uncertain about what to say. So, I appreciate your willingness to risk a little time that may feel painful, soothed only by the truth that she knows you care. So, thank you. Dad
6/1 Hi Jim, Thank you for your very thoughtful message. Susan and I really enjoyed our time with Lynne. Our visit worked out just perfectly with time to chat in the hallway, see her room, take a walk in the neighborhood, meet some of her Aegis friends who all adore her and sent her off on her field trip. When she saw us, she greeted us with the biggest hugs!
After our visit, Susan and I met five of our Microsoft Posse for lunch down the street, and it was wonderful to see everyone and talk about our favorite old and new memories. Getting reacquainted with this group the last few years has been so wonderful for me, and it really is Lynne who has brought us together.
Please know we love her very much and would do anything for her. Let us know if we can do more. You, Lynne and the boys are in our constant thoughts. 😊 xoxo Karin
6/1 I’m choked up right now with tears in my eyes. I hope you appreciate how much your care supports our family. Jim
Two co-workers/friends from the 1990s visited Lynne. “She was happy to chat and walk outside. She seemed calm and listening as we walked arm in arm. Staff supported us with the freedom to visit. Such a joy for us to see her in person.” #Alzheimers #Alzwa #alzauthors
Two friends of Lynne since they worked together in the 1990s had a nice visit with Lynne. Kristina wrote, “I don’t think I’ve seen her for a couple years. Kristine joined me. We took a long walk in the neighborhood and enjoyed a latte at Queen Bee. I’m not sure if she recognized me this visit. She answers questions but answers are pretty short. She wasn’t able to direct us to her room. Makes me sad and reminds me of my dad and grandma who also had Alzheimer’s.”Their trip made Lynne happy as you can see from the smiles on Lynne’s face. And told me she remembered the fun she had with the visit and enlivened with the puppy.
Lynne and I have good days and bad days. On good days she had her nail’s done and joined in a bell choir. One visit she finished her dinner and staff gave her an extra plate. She ate most of the chicken and mashed potatoes and avoided both broccolis. She used her fork or used her fingers without spilling. “This is so good.” “Do want a piece of banana cream pie?” She shook her head, “No, it’s …” I corrected myself. “It’s lemon meringue pie.” She nodded, “Yes.”
Suddenly she shook her head, “That’s (name). She’s a piece of work.” She was listening to dining room voices. She’s upset with residents and staff several times and needed to be restrained. They will slightly increase Resperidone to calm her. I told her the ultra scan after my vascular surgery looked good. She was pleased. “I told her the story of the dangerous vascular surgeon’s offices on the 14th and 11th floors. I walked down from 14th to 11th floor and got locked out in the stairways. I had to exit into the garage.” She looked concerned. Staff said they were locked because of Covid, so I suggested they warn your patients.” “My vascular patients don’t use the stairs. You’re an exception.” By the time I left the office had full-page signs in a plastic holder. I complained, “Wait, you didn’t give me any credit at the bottom of the sign.” They laughed. Lynne laughed. I told Lynne I walked uphill for three blocks to the bus stop with my right hip muscles and glutes tightening up so hard I had to sit to recover. The doctor explained the soreness was expected after my surgery. “Keep walking and blood may find a way to get there in 6 to 12 months. If not, you’ll have to live with it.” Lynne was concerned. I said, “That’s OK. If I have to, I’ll buy a scooter.” She laughed.
Her oldest twin had a boil on his buttocks that made him cry out from the bathroom. I said, “It’s ok now, they were able to drain it.” Lynne nodded, “Oh, good.” I added, “He was afraid they’d have to lance it.” Lynne scrunched up her face, “Ow.” She said, “We should go home now.” A caregiver unlocked the door for us. I said, “Oh look, here’s your Mother’s Day card from your boys. Let me read what they wrote.” She stood still. I read one note, “Well, you did well on that one.” She laughed. “Let’s check the next one. Well, you did real well on that one too.” Let’s see how well you did on this one.” She listened with a big smile. “Well, you did well on that one too. Three out of three.” She laughed. “How does it feel to be a mother of three boys who love you so much?” She glowed. “It’s time to go,” she said. We walked back into the dining room and said she wanted to go home. I told a caregiver Lynne wanted to go to her room. She shook her head, “She goes in and comes right back out.” She walked with me to the elevator. “I love you so much,” she said. We hugged. She grabbed my hand tighter and tighter as she walked away. “Lynne, let go, I have to leave.” “Oh, that’s right.” She let go and slowly walked toward the dining room. Like everybody, we have good days and bad days.
The boys planned Mother’s Day and wrote her a card. Dad freshened up his apartment. Clemens ordered Thai food and boiled the meals. He baked a carrot cake, Lynne’s favorite. Lynne ate every serving. And said over and over, This is so nice. #Alzheimers #Alzwa #alzauthors
Lynne’s friend mailed me a letter for Lynne. She often does. I gave it to her as she ate. She held it with a smile. I opened it for her. She was pleased. I pulled it out of the envelope. She opened it & was excited to see Happy Mother’s Day. #Alzheimers #Alzwa #alzauthors
A friend since college grabbed Lynne’s arm and talked and laughed with her for an hour. She shares by talking with Lynne far better than I can, like how they danced in College and laughed at her funny looking dog, Daisy. I just followed along. #Alzheimers #Alzwa #alzauthors
We bought a pedometer to count Lynne’s steps listening to music, often arm in arm, inside or outside. We clipped one to her waistband with her cell phone in it. She walked 13,408 steps the first day, 18,635 after 24-hours. She welcomes arms. #Alzheimers #Alzwa #alzauthors
The hugging round with the boys comes late in the day after walking and hearing them talk about colleges, job options, gap years, old passports, Mother’s Day. Fatigue stirs Lynne to her feet for the hugging round. She looked good, they say. #Alzheimers #Alzwa # #alzauthors
Lynne’s three sons walked her outside for the first time in over a year. She obviously enjoyed it. It took a while to convince her. We were told she didn’t want to come down from her room. So we asked if her oldest could go up to see her. When she saw him she was ready to come down. Simple pleasures, heartfelt memories.
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.”
Lynne joined me for our visit in a private room. She wore black and gray cotton sweaters, summer red and yellow capri pants and flip flops on bare feet. We had 11 inches of snow outside her window. She said, “There was so much snow. … You couldn’t go.” I had decided to amicably encourage her by quietly listening to every word, if she was in a good mood. I want to know her thoughts when she spends hours alone, or absorbed in thought around other people, and when staff doesn’t need to call me because she’s anxious. Quiet smiles amid slurps of our strawberry and vanilla milkshakes. “They’re going to get someone new. … Not yet.” She looks at the floor. “We had it all. We have family. We’re together.” I nodded, “We are.” She squeezed her hands. “And they’re so good. … We’re so lucky. … We’re so blessed.” She sat back. “That’s why they say, ‘I’m uppity’…. Because we have it all.” We opened her 55th birthday album of family photographs. She paged through it, stopping with a laugh and a point. “They were so little. … I loved that shirt.” She’d follow a thought in silence until she noticed the album and flipped another page. “There she is.” I read her the poem, I’m From Mom, which she wrote for Karen on Mother’s Day in our fiftieth year of marriage. She laughed, repeating phrases. After half-an-hour, she leaned forward. “I think I should probably get back. I don ‘t want to overstay. Or they’ll think I’m uppity.” We showed her poem to the concierge, who read it along with her. “It sounds like Mary Oliver,” he said. He made a copy for the Activities Director, who promised he’d read it in poetry class the next day. I slipped out.
Lynne’s friend Ellen is a speech pathologist who worked with special education students. Ellen saw Lynne engage with kids on a playground. “She had an incredible knack for connecting with kids. Open, honesty in her approach, just unwavering for a kid. She had a knack for saying true things, not greater than it is and not less than it is.”
Ellen thought to herself: “Why don’t we have her as a teacher with us?”
Years later Ellen helped Lynne’s students in special education. “She was a great experience for anybody, especially kids with behavior challenges. She was drawn to them, worked with them, and made a difference with them. She had a highly unusual authenticity, connected. She didn’t have that hierarchical tone. Consistently with kid after kid she convinced them, ‘We are peers in our humanity.’”
Lynne’s three boys, mostly men now, over 18 and 6’ 3” tall who wrap me in their arms, visit Lynne an hour every Thursday when they are together between fulltime schooling and work. Lynne squeals with joy when they sit down in the outdoor living room at Aegis. They share and laugh for an hour over memories and current stories. Rides on her scooters. Scary rides at theme parks that stopped at the top. Cars they liked to drive or were afraid to drive. Lynne burning up her Mom’s car engine in high school. Lynne pumping up her ballplayers by urging them to visualize themselves making a great play. It worked, one said. The older twins describe a neighborhood playmate who towers over them now. One remembered the playmate’s mom, a friend of Lynne’s, would criticize him as if he was her kid. Lynne telling them to write down goals. They never did it but they agreed research shows it works better if you write them. Agreeing, You could talk to her about anything, everything. It’s taken a long time for me to get her brotherhood into a regular schedule on topics they would enjoy. At first irregular visits were awkward with uncomfortable silences. I reminded them dementia wipes out short term memory and language skills first, leaving her able to recall long-term memories. Plus, she is interested in whatever interests them. They keep her animated. They look forward to it, arriving early the last two visits. I worry they will forget. I remind them. I worry the boys will feel guilty they didn’t visit more, like I feel guilty about my mom when she had Alzheimer’s. I worry once a week is not enough. Lynne said recently, They don’t have to do that. They’re so busy. The whole family worried as the boys’ school performances deteriorated during their shock over her diagnosis. The twins left college to come back together to support each other to support her. She frequently remembers them when people ask her about them, they are all doing exceptionally well. Now she falters to find words to name them even as she shakes her smiling face in bliss. I worry I should do more. I should visit outside more. I should call her on video chat more. She rarely answers because staff says she stays in the shared living area. I reason if she’s not calling me, she’s happy with some other activity. I hear her ringtone on my cell which usually means she or staff want me to cheer her up. Sometimes I ignore it because I can’t find the courage to help her. I feel guilty. I tell myself about all my other responsibilities as a widower, writer, investor, father, grandfather, and sharing her story with friends. I have to exercise and stay active for my mental healh. But I still feel guilty when I remember I visited Mom less and less as her awareness drained out of her. I might have done more. For now her boys love their visits, and are busy doing well, which is Lynne’s ever accessible joy. And if they feel guilty in the future, I hope they can forgive themselves. I can ususally forgive myself, but there is always the residue of doubt about what I might have done.
Lynne settled into my new red Mazda CX-30 for a sunny afternoon drive through her old neighborhood listening to songs from her playlist of favorites. We drove past the Greek Orthodox church. I asked, “Did you ever go there?” “No, it would feel like I was intruding.” We drove down the alley by her house where she raised her newborn sons. Blossoms still towered over her tall fence. She recognized the ballpark and Montlake elementary and the playground equipment where I played tag with her sons. The late afternoon sunlight blinded us as we drove past houseboats, prompting me to tell her a writer in my class is working on a memoir of living on a houseboat for 20 years. We stopped at a waterfront park to see squawking ducks and a fearless pigeon that posed for a photo with Lynne. A daddy chased his laughing children as landscapers said they were planting 3,000 plants, so we thanked them. Kayakers on the water reminded us when Mom loved a lake where our camper trailer perched on a bank above a muddy shore. Lynne laughed. “The Mighty Muck Monster.” That was our kids’ favorite of many stories I told around the campfire. The Mighty Muck Monster rose out of the muck, so I warned them to stay away from the shoreline muck day or night. I needed an ending, and it came to me from somewhere. “It was afraid of nothing,” I paused. “Except, for one thing.” “What was that,” they asked? I leaned forward for my hushed answer with complete conviction, “A mad mommy.” Oh, yes, they could imagine their mad mommy protecting them from the Mighty Muck Monster. We drove around Lake Union for an hour to arrive in line for shakes at Dick’s Burgers in the gloaming. We were cold by the time we got back to the car. We headed home as The Judds sang their song, Love is Alive. She mumbled something, so I patted her knee and asked, “A little cold?” “No, I’m happy.” That thrilled me. It awakened me. I was happy. For the most part we were as comfortable a couple as Karen and I would have been — there were exceptions of course, like when Lynne tried to take my strawberry shake after she downed her vanilla shake. I constantly search for different ways to make her happy. At times it seems simple, and at other times, hopeless. Maybe I make it too complicated.
Lynne and I are mentioned in this article in the the Seattle Times.
Social isolation is difficult for anyone, but advocates say that for residents with Alzheimer’s or dementia, a lack of visits and decrease in mental stimulation can accelerate cognitive decline that in some cases may be irreversible.
This is what I wrote Paige Cornwell about the article. “What a great story of the isolation and loss of caregiving available for residents. I want to add information that I had not given you. Lynne was a special education teacher also before she had to retire. And Aegis Madison has now granted me essential caregiver status to visit Lynne twice a week, even being able to take her for a ride in my car.
That picture of us by Ellen is incredible (actually there are three pictures linked on the website). Thanks again for all you’re doing to educate people.
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.
Aegis staff and residents are scheduled to receive their 1st Covid-19 vaccination Thursday, 1/14/21 from 11 am to 5 pm. I have signed her vaccination authorization. Their second shot must be delivered within 21-28 days after their first one.
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.
Lynne is scared by hearing a man’s voice repeating, “Something is rotten ….” After a caregiver and I calmed her down, he showed her a book of poems, 180 More by Billy Collins. Lynne said, I love that book. I think she is rememberng lines from Billy Collins’ peoms.
Lynne has told me and several others that she is scared by a man’s voice. Luna, the care director mentioned it several times, so they have called for a psychiatric visit with her. [I hope Lynne doesn’t think he’s the man behind the voice].
She told friend Nancy, “A man keeps saying, ‘You are loved.’ But nobody believes me.”
Nancy calmed her down, “I believe you saw something that seemed like a man in your apartment.”
That would be spooky. Interestingly though, she never sees a man, only hears the voice. Friend Donna emailed me about a video chat because Lynne was upset. It seemed like Lynne had a hallucination about someone being in her room offering her M&M’s. [note: I drop off trail mix with M&Ms every morning and staff delivers them to her].
Lynne is losing cognition steadily now. Sentences are shorter, she often can’t complete them, and she repeats herself. Neverethess, she can chat even though she may mix up memories [I do that too]. The last call about the man’s voice might have alerted us to the source of the voice. A Caregiver called me because Lynne was upset by a man’s voice that repeated, Something is rotten…. I said, Something is rotten in Denmark How did you know that, he asked? It’s a famous saying. The caregiver picked up one of her books to distract her, 180 more: Extraordinary Poems for Every Day, by Billy Collins.
Lynne said, I love that book.
I said, “Lynne you’re hearing Billy Collins voice saying poetry to you. But actually it’s your memory repeating his poems. Your memory is working.”
I emphasized the poems are uplifting. So when his poem says, “You are loved,” he is affirming she is lovable. She doesnt’ have to worry about that voice. It’s her memory working well. I’ve restated it two or three times. I told Luna we found the man. She laughed, “We’re a team.” We’ll see if that helps. At least it’s a nice way to comfort her and read her another poem. I ordered the book for me to read poems to her. And we’ll if the pyschiatric visit confirms it’s mostly her memory for poems.
Each day brings new puzzles to answer to solve to give us a little hope for a little while.
I can take Lynne outside alone, so in heavy rain we quietly drove to the lakefront and around town playing Christmas & folk music. She focused on passing scenes with memories of walks and restaurants. Caregivers found her missing birthday dress.
She clicked into her front seatbelt. We liked seeing Cal Anderson Park swept clean again and hoped the neighborhood could find peace. We sipped Dick’s vanilla milkshakes. We drove past her former home. She remembered times at closed restaurants close by, her boys playing along the shoreline, Uncle Ike’s. She laughed when I reminded her she walked me downhill to the Lake so fast we had to turn around so I could get back up. Finally, she carried her heavy Christmas wreath of green and red bells up her room.
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.
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.
The Director of the Aegis facility indicated that I was cleared be an essential support family member, which permits me to have two visits per week with Lynne for either an outdoor walk or a personal visit in the lobby area.
The privilege is a serious responsibility impressed upon me by the director and activities director. They drilled me about protocols and stressed they had no Covid in the building, so if it comes in, it will come in through me. We were not to walk near a park two blocks away now overrun by homeless tents. If I visited, I could hug Lynne with a medical mask over my mouth and nose, a plastic shield over my face and a medical gown.
Friday we walked in a quiet neighborhood to view Christmas decorations spreading light in the gloaming. We phoned Henrik. It felt like normal family time. On Monday Lynne gave me her still strong hug for the first time since March. She also hugged a Christmas gnome from our family decorations to go alongside the 12 wooden Santas from her home. Thanks to neighbor Jennifer for that suggestion. We video chatted with Keith, Sheri and Pam.
Lynne told us that she felt safer recently — “things have calmed down a little,” is how I think she said it.
The visits gave us tenderness that felt close, lively, calm, satisfying, and relief from the painful, frustrating isolation we’ve been enduring.
We are grateful to be one step closer to our pre-Covid normal this Christmas season.
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.
Nancy a friend of my daughter Lynne, sent me the book Female Firebrands by Mikaela Kiner, CEO of reverbpeople.com, and a Microsoft alumnus like Lynne and Nancy. Luna, the Care Director estimated Lynne showed her the book 20 times to open and read a paragraph. The subtitle is Stories and Techniques to Ignite Change, Take Control, and Succeed in the workplace. Lynne seems to doing that in her memory care unit. Thanks, Nancy and Mikaela Kiner
Aegis reported they kicked off the week before Thanksgiving with a little fun in memory care. The Health Service Director dressed up as a Turkey and spent some time with Lynne and other residents. Lynne’s the one on the left in the photo. 😊 Holiday decorations should keep up the spirits during the upcoming “Week of Thanksgiving.” Staff will deliver different types of deserts for the residents and visitors every day on the Outdoor Living. Lynne has been active with weights, a hair cut and shampoo and outdoor walks. One day, she came back from her walk and entered the daily stand-up staff meeting. They were pleased to see her and gave her a chair. Lynne’s still caring for staff. She saw a caregiver have an incident with a difficult resident and said to her, “You’re having a bad day.” A nurse told me about another bad day for Lynne. A resident hit her in the chest, hard enough to have her chest looked at, but there wasn’t a visible injury. When she was shaken by another incident she witnessed, caregivers led her onto her bike. After she pedaled herself into recovery, they asked Alexa to play Madonna so they could dance with her until she felt safe and settled. Caregivers continuously resolve such disturbing behaviors. We have a lot to be thankful for, including caregivers in tune with Lynne during the loneliness on holidays. Bless them.
“What are we going to do for Lynne’s birthday,” asked Nancy, a friend of Lynne’s?
I hadn’t thought about her fifty-fifth birthday. Last December Nancy and friends invited me to a memorable party for her. Nancy organizes Zoom conferences with up to 150 people, so she quickly proposed a Zoom-party on December 12th. Soon Lynne excitedly added more friends on her Facebook page before I’d included relatives. I worry I missed people she knows.
Staff at Aegis are enthusiastic about the idea.
The marketing director wrote, “I think we’ll do whatever we can to make this work for Lynne!”
The activities director wrote, “Saturday, December 12th will be one great birthday!”
He attached his photo of Lynne celebrating her last Mother’s Day party and said this birthday party will be even better. Aegis recommends we not overwhelm Lynne or their staff by scheduling an hour on her birthday and and an hour the day before or after.
Nancy and friends are generating ideas. People could log in to Zoom and stay online for a while. If they send Nancy photos, she could post them. I could stage times for people to join in small groups. Nancy could set it up so only one person is talking to Lynne at a time. We’ve asked if Aegis could find a large screen in a “public” room where residents and staff could join, and where Nancy could add music from her computer so Lynne could dance at her party.
Mark your calendars to join Lynne’s amazing group of friends and stay in touch for final details if we can make this happen.
Aegis reviews Lynne’s behavioral symptoms quarterly. Her sleep patterns were disturbed by the switch to standard time and the increase in nighttime. The medical director prescribed medications for longer and more regular sleep.
Lynne repeats herself, called looping, about every 30 seconds when she initiates conversations. She waits outside the care director’s office for her to come back rather than sit with other people. They’ve had another COVID case on her floor, so she’s in lockdown again. She often calls me to say it’s difficult.
I said recently, “Well of course it’s hard honey, you have a disease, Alzheimer’s.”
She said, “I do? Maybe that’s what it is.”
Now I use short sentences to tell her stories of current events, even the election, or long-term memories of her boys, her mom, her friends. If we meet in Outdoor Living, I’ll bring her a vanilla milkshake from Dick’s Burger’s. She thanks me, listens, comments appropriately, and searches for words to add something. She’s very pleasant most of the time. When her mind wanders after 20 minutes, I ask her if it’s time to go.
Lynne 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. She was quiet until saying, “She’s nice and I don’t want to commit and not follow through. I feel like I fit in. It took a while.” I agreed she is nice (I had no idea who she was talking about). “But you always follow through. She helps you walk. You get a good sleep. You eat good food. You ride your bike. You listen to music. You always follow through.” She agreed and I piled it on. “You always followed through in high school. I was writing from your journals and letters today. You didn’t want us to buy a house on a hill because it was too difficult to walk home from school. We bought the house anyway, and you bought a scooter you hid in your friend’s garage, so you could drive up. You, your friends, and your brother drove all over town. I never knew.”
She laughed. I added another story. “You felt the chemistry brewing with a causal boyfriend after talking with him throughout a ballgame on a date with a different boyfriend, followed by a month of eye contacts, chats in the hallways, teasing from girlfriends. Finally, one day he told you to call him if you wanted to see a ballgame with him and his brother. That was your chance to find out if he was serious. You said, “Call me if you want me to go with you.” “You knew he didn’t know your number. You waited. You prayed. Finally, he called. You knew, you knew, he would be your first love.” Lynne smiled. “Yep.” I piled it on some more. “Your good friend on the yearbook staff told me you were the one who organized work, because she was such a flake you felt you had to keep her on track.” Lynne laughed but objected. “She was not a flake. She did a lot for us in the yearbook. We worked on copy together.”
We paused. “OK, Dad. I’m ready for bed. I love you.“
She calls and I’m there for her. I can tap into her joy to let laughter flow over us and rinse away fear for a while. I’m learning more intimately about her and loving more deeply as I learn. I’m learning more sympathetically about me and healing more deeply as we share. Being there is a balm for the years I was away. I am living the lyrics of Kris Kristofferson’s song, Loving Her Was Easier: “Coming close together with a feeling that I’ve never known before in my time. Wiping out the traces of the people and the places I have been. Dreaming is as easy as believing it is never gonna end. Loving her is easier than anything I’ll ever do again.”
Lynne can still laugh, even at my jokes. “Lynne, everybody loves you. Everybody — well, maybe your little sister didn’t like you for a while.” “Lynne, you don’t have to wear a mask over your mouth while we’re on a video chat with me. I don’t have Covid.” Lynne liked a new headband Edith gave her. I thought Edith made them and called her, but she purchased six different headbands for delivery to me. I’m giving them to Lynne one at a time. I reminded her she was wearing one from Edith. She laughed. “That’s Edith.” Henrik and I bought her a pumpkin and Honeycrisp apples. She wants the pumpkin to have a smiley face. She likes fresh Honeycrisp apples, so I cut one into small bites for her. She ate them while we video chatted. She had to leave the chat to wash her sticky hands. I didn’t tell her Henrik and I picked them fresh on our annual trip to Bellwood Farms in Bellingham with Keith’s family. She called one day and said, “Okay, I’m not going to cry.” We turned on her echo to play Lyle Lovett and she got on her bike to pedal. She said that was better. I’ve added treats to Lynne’s daily Starbucks and trail mix. Friends and family send me books and I deliver them one at a time, because we have not been able to confirm she gets books sent to her address. She had Where the Lost Wander by Amy Harmon when Keith visited through plexiglass. She can read pictures better than words now. Edith delivered one, titled: This Book Is Literally Just Pictures of Cute Animals That Will Make You Feel Better, edited by Smith Street Books. She laughed and shook her head, “That’s, Edith.” I give Lynne copies of photographs of her boys and family. She says, “I just want to be with my boys more.” Luna, the Director of Caregiving, has fun with her. She said, “Lynne was sitting outside my door one day. I said come on in. She laughs a lot. One day Lynne told me she was done working for the day and was ready to go home. She is the number one resident caregiver at Aegis.” Of course, Luna and caregivers are having fun with her. That’s who she is. I loved her hearty laugh when we ate, sat, read, hugged, talked, celebrated, kicked a pink soccer ball, walked the neighborhood, or arboretum, or waterfront on Lake Washington. And I know caregivers are solving problems. Lynne ended another chat with, “Dad, I have to go now because I’m having a problem with my bra.” Luna told me she’s pulling her bra down around her waist. It makes her extremely uncomfortable, so Luna ordered two camisoles. Luna also alerted me that Lynne cycled through a conversation last week — eight to ten times in a few minutes. She’s started picking at her food. I tell myself it’s fair for Aegis caregivers to have most of the fun because they’re caring for her the most. I tell myself that when I miss her the most.
Stu Ervay blogs about giving home care for his wife of 58 years during her final stage of Alzheimer’s (https://stuervay.com/2020/09/16/relationships/). He’s kept himself in good health mentally and physically. She’s nearby pleasantly busying herself while he pursues his interests and converses with family and friends. I envied him recently when I couldn’t help Lynne in her secure comfort apartment in her final stage of Alzheimer’s. A thoughtful caregiver had set up a video chat with Lynne while she pedaled on her stationary bike in a huggable fuzzy pink salmon sweater. She got hot quickly and tucked her chin inside her sweater to blow air down her chest to cool off. She gave up and left her apartment. I stared at an empty bike seat. I ached to hand her a t-shirt and guide her to the bathroom to change into it. Stu could have put his arm around his wife and eased her into a cooler shirt and diverted her to a new activity. Yet Stu misses the female half of their “worldview that amalgamated the spiritual and rational … way that … needs real life context.” He posted this question as a married man caring for his wife: “What do you do to fill the emotional places in your brain or heart when your wife in no longer communicative or even aware of your presence?” I feel that void as a widower even though I’m blessed to communicate with many women: care supervisors, trainers, counselors, activities directors, marketing representatives, caregivers, nurses. They get the advantage of being with her when she is cheerfully busying herself around her secure memory care floor. And I talk with her girlfriends who tell me they have heartwarming chats with her about their shared memories. All of them encourage and comfort me like times I can’t be by her side and I can’t talk with my wife. Those women help me, as they did Monday when I dealt with the first anniversary of Karen’s death. I prayed fitfully, skipped meditation, set lots of writing goals, delivered Lynne’ daily Starbuck’s iced coffee and Mountain Trail Mix. I bought a bouquet of tiny roses and put them in a vase on the kitchen counter like I spontaneously did with Karen. I shared a photo with my kids. After that I watched tennis in Hamburg and the men’s and women’s finals in Rome. My daughter Pam called for a long chat and recommended watching repeats of the Tour de France. I watched episode 20. My wife’s sister called. I grazed several meals. A realtor called to send me paperwork to sell an asset at full price. His voice sounded disappointed at my mechanical reaction. I watched Monday night football. At 7:00 pm I rejoined an Alzheimer’s YOA support group of men and women on Zoom after a two-years’ absence. They welcomed me back as I poured it all out. I watched comics on YouTube videos. I finally slept feeling I had coped well, despite getting nothing done on my to-do list. More than I had admitted before yesterday, I share Stu’s yearning for his wife, “the other half of me for over half a century.” And I’m thankful, even though every Alzheimer’s caregiver’s journey is solo, there’s lots of support.
Lynne’s joyous on her first ride with her stationary bike. You can hear Dad cheering from her Facebook portal and the caregiver urging her on. Special thanks to the concierge last night after I told her the bike had been assembled for use. She immediately went to the basement immediately and wheeled it up to Lynne’s room while the caregiver covered the concierge desk. Oh, joy!
Aegis reduced its quarantine restrictions allowing caregivers to accompany Lynne on walks as many as three times per day. She’s active, so the floor supervisor gave her a fourth walk one day. Our family ordered a stationary bike for her room, where riding it would lift her spirits during Seattle’s oncoming cold, rainy weather and future lockdowns. She and staff were happy when I printed a picture for them. That picture lifted my spirits before it arrived. I scheduled an Outdoor living room visit where we could talk through plexiglass shields. I showed her a heartwarming video of a Labrador mother using her paw to protect her last puppy from being adopted. Lynne’s vision has declined so she used her finger to focus on it. “What is it? Is it mine? Is it a puppy? Is it mine?” “No, it’s just a funny video.” I wondered if she thought it was her dog. She stood up, disappointment draining the smile off her face. “It’s not mine?” She started to sob. She had said she wanted a dog earlier that month, but we had told her that wasn’t possible. “Honey you can’t have a dog up on your floor.” She sobbed as she stared at me and backed in and out of the curtains twice, sobbing harder. She staggered toward the front door and hit the windows again as she backed away from me. I stood up wondering what I could do. A caregiver came out quickly to comfort her as she guided her back inside. I told them it was about a puppy. I was sad and miserable. How could I have forgotten she wanted a dog? Very soon I got a text message. They had redirected her to the picture of the bike. “She’s fine now.” I was too. Caregiving is a long, bumpy ride.
Lynne called me to video chat because she was bored. Her caregiver was standing by.
”I’ll be back in a little while to see what you want to watch on TV.”
That was encouraging to know. I suggested we dance to music from her Alexa dot. She liked that idea. Then a resident slowly walked behind Lynne to sort through Lynne’s bedding. Lynne turned around to see her. She said hello and called her by name, “What are you doing here?”
She silently continued browsing. I suggested Lynne help her leave the room. Instead of walking over to guide her out, Lynne walked out of the Portal camera view toward her door. Meanwhile her friend continued sorting through the bedding until she found two books. She lifted them up to eye level with one hand and shuffled away toward the door. I heard no sound. I waited and hung up.
I felt helpless. I couldn’t help her help another resident. I couldn’t help her protect her books. I couldn’t talk with her. I couldn’t help her dance.
I decided to believe in hope. Lynne was no longer bored. And she was helping a resident; and she found her caregiver to help her; and they convinced the bargain hunter to return Lynne’s books; and Lynne could browse through other residents rooms to replace her books; and by this time she was watching her favorite TV show; and we’ll dance another time.
I also decided we need to keep sending her paperbacks because we’re stocking Lynne’s whole floor.
At least I cared for me as her caregiver under Lynne’s COVID-19 quarantine.
Lynne and I shared a scooter when she called for our nightly video chat to relieve her sundown syndrome under Covid-19 lockdown. Lynne’s friend, Leslie, sent me a photograph of a red scooter identical to a yellow one Lynne and her high school girl friends rode around Eugene Oregon. I found a way. I printed in color and pointed my cell phone camera to it instead of my face. It filled my screen. It filled Lynne’s Facebook Portal. She laughed as soon as she saw it. “There it is. We rode all over on that.” We chatted about how she didn’t tell us she bought it and hid it in a friend’s garage. I said, “That scares me to look at even now.” Thanks for the memories, Leslie.
A friend sent me a link and said he thinks the scooter is a Honda CT90. Thanks, Chuck.
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.