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.
Caregiving Caregiver Loneliness Caregiver Fear
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?”
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.
Care giving Family
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.
Shared from the Seattle Times by Paige Cornwell
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.
Lynne wanted to be the first resident in assisted living to receive the Covid vaccination. Staff said, “She was a champ! She told her boys about it immediately afterward.
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?”
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?
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.
Video Chat Fun
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.
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?
Did you hold them in each arm?
No, I kept them separate
Do you remember Christoph?
Oh yes. I worried about him
Soon she said, Well I guess I’d better go now
Ok, well I have more poems. 179 more, so call any time
Sharon Olds is the author of 12 books of poetry for which she has won the Pulitzer Prize and England’s T. S. Eliot prize. https://www.sharonolds.net/biography
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.
Fun activities under Covid
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.
But did we ask too much? What about Christmas?
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
Fun activities during Thanksgiving
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.
She says yes, and adds, “Thanks, Dad.”
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?”
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.
Video Chats Long term memories
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.”
Fun activites Alzhemier’s
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.
This is the KOMONews report on Lynne’s and my story regarding the Alzheimer’s walk. https://komonews.com/news/consumer/dont-underestimate-covids-effect-on-people-with-dementia. I’ll be at Aegis-Madison if any of you want to join me Saturday, October 3 beginning at 8:45 am. You can see me and Connie Thompson of KOMONews at the virtual walk sites because she also has an Alzheimer’s story. Links are on the Alzheimer’s website for Seattle.
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!
Fun activities caregiving
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.
video chats fun activities
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.”
I called the concierge who promised to have someone help her get some sleep.
I interviewed Candy, a friend of Lynne’s about their time together at the Bill and Melinda Gates Foundation in 1996. I am grateful for her memories full of Lynne’s fun and professional skills. I sent her an image of an article about recruiting talent for the Bill and Melinda Gates Foundation published in the Seattle Times on October 17, 1996 Titled, “Want to Work for Gates?” The front page was in a 11 x 17 picture frame with a photograph of recent hires when the foundation was rapidly expanding from an influx of donations. The frame was given to Lynne when she retired from the foundation to work as a special education teacher. The back of the frame was filled with farewells and signatures of her fellow workers.
Candy asked how to contact Lynne for a video chat. Lynne’s phone messages show Candy called later that afternoon at 1:27, 1:28, 1:35 and 1:35. Lynne missed each of those calls. Candy’s persistent. She called the next day at 3:06 pm and missed her, and finally connected at 4:02 pm for a 23 minute and 50 second phone call.
Candy sent me this email, which is how I discovered she’d dedicated herself to connect with Lynne while she still remembers:
“I talked to Lynne via video chat today. It was so great. She remembered me well and was really present and we reminisced about old times. I’ll call her once a week and told her she can call me at any time.
Once they open on the CV19 restrictions, I’ll do walks with her and go visit.
Thank you, thank you for this re-connection. In gratitude, Candy.”
As Lynne’s dad, I’m unable to resurrect those intimate stories that still exist in the great majority of Lynne’s long term memory. I’m thrilled she can share good times in normal conversations with friends. I thanked Candy for her persistence I replied, “That’s as good as it gets for me right now. Thanks for letting me know.”
I asked it I could share this and she said, “Happy for you to do so.”
A caregiver and Lynne called Sunday night for no reason other than to video chat. No tears, no fears. Almost normal.
I told her I had a scan scheduled for Tuesday and had to avoid chocolates for 24 hours beforehand, so I was going to have chocolate cake for breakfast. She laughed.
I asked if she was eating lunch in her bedroom or with other residents. She didn’t know. “I haven’t paid attention to that. They have places on the floor and the tables, so we’ll be safe.”
She had the new book in her hands from her sister Pam. She took the flyleaf off and scanned it and scanned the book, hesitating as she read each word in the title. “I’m excited about it.
Ok, remember when you get a new book you have to return one for me. Return Bear Town because I hadn’t read it yet.”
The caregiver was still there so he looked for it in her shelves. She said, “No, it’s not there,”
She tugged back her blanket and sheet to rummaged through them until she found a couple of books and found it. She gave it to the caregiver to leave with the concierge.
We chatted for 18 minutes. I updated her on Pam suffering in wildfire smoke, her niece liking her visit to Lynne’s alma mater Oregon, and on an on. She responded with understanding to each one. When I paused wondering what to say, she said, “Well, I should go.”
We told each other we loved each other.
Those oases of normalcy are normal with Alzheimer’s. They are abnormally wonderful to experience and share. And I believe her cognitive clarity was also helped by the major reduction in COVID inactive isolation. She’s escorted outside daily, exercising regularly, walking her floor, helping fellow residents, getting video chats.
Whatever, we persist and give thanks for each oasis.
Lynne summoned the courage to suffer one for the team to contain the COVID virus.
Thursday she dressed up to return to exercising in the Aegis gym with weights. She’s walked city streets every day, as much as twice a day from what I hear. Her high-tech friends have called me with reports from their chats, such as Lynne misses her sister. Her boys dropped in for video chats on their Facebook portals since they now have their own Portals. Connections are not without glitches because staff leave before making sure Lynne is set up in a chair in front of the Portal with a lamp on so we can see her face. We’ll improve on that.
Saturday Lynne and a caregiver connected with me. She said, “I’m not sure I can take this.”
“Of course, it’s hard. But remember you don’t have to stay in your room now. You can walk your floor. You can go outside to the patio.”
“Can I go down to the concierge? Some of these people …”
“No, because your floor still has a COVID lockdown from the rest of the facility. Aegis is protecting the other residents from infections from your residents and protecting the very frail people on your floor. You’ve got to protect other people. You’ve got to take one for the team right now.”
She took a deep breath. “OK, I can do that.”
“Let’s call your sister. She’s having a tough time with hazardous smoke from wildfires that kicked up an asthma attack.”
We added Pam to the call. I said I had to go and let my daughters chat.
Short short Story
Lynne and I are fighting alongside caregivers for Lynne’s well being under the COVID-19 lockdowns. We succeed and celebrate at times. We fail and despair at times. The extra heavy effort is taking its toll and still, I believe we will persist because we are listening, sharing and being patient with each other as we continue to make plans.
The main issue is how to care for Lynne when she spends lengthy, lonely hours in her room. She gets anxious and leaves her room and is admonished for leaving and is returned to her room. She feels like she is trouble and they don’t like her. She gives herself pep talks and says, “I can do this.”
But few things occupy or empower her, leading to the spiral downward again and afraid to leave her room for help. She’ll call me in tears. “Why am I such a crybaby?”
Lynne’s new floor supervisor, Sally (not her real name), shared her experience. “I spoke with Lynne at length last night, while she soaked her feet, to reassure her she’s healthy and not to blame for anything. I’ll be honest, it’s a conversation she and I have several times a day. It’s always a good talk, she’s always smiling and feels better afterwards, it just seems after some time alone she comes back to the same conclusion that she’s sick or a bad person. The best we can do is continue to reassure her and try to keep her occupied while in her room.”
It’s hard to occupy her under lockdowns. She was a special education teacher and high-tech human resources specialist who talked with people to be sure they’re OK, but that impulse is completely stymied.
She and I call each other for video chats. I tell funny stories, and sometimes get a laugh. I ask her about latest book, have Alexa play music, suggest we turn on the TV. We are frustrated because her wandering fingers turn her Facebook Portal on and off, pull echo dot plug out of the wall, turn off the TV, or turn off the sound on the TV. She gets defeated because she presses buttons on the remote but they don’t work. She quits and I feel helpless. I call the concierge and they promise to call the floor.
I emailed Sally for help a few times as she asked but she never responded. After another night unable to cheer up Lynne, I vented in another morning email to top administrators.
Luna, the Assistant Director called that morning to talk about Lynne’s health care and mine. She worries because when Lynne and I have lengthy talks, she gets deeper anxiety from me and I get deeper anxiety from her. I admitted Luna was right. We both need help.
She advised me to be cheerful like she is when she comes into the room. I watched her skillfully cheer up Lynne and try to mimic her cheerful voice and ability to distract Lynne away from anxiety. Luna said, “She is so upbeat that it’s easy to do. When she goes down, divert with all the funny stories and things that you’re doing.”
I admitted her technique works when staff come in with positive ways to dress her, help with shower, make her bed, give her breakfast, turn on TV, give her meds. But I’m stressed as a remote caregiver. I can’t do anything except talk, and she is anxious and afraid by the time she calls me.
Luna listened to me and got it. She said, “Do this: tell her you’re going to hang up and call me or Jessica, the assistant director of overall care (nor her real name).”
I said, “I don’t like to do that because I want to respect your role as overall care director. So, I call the concierge. I’ve emailed Sally and she won’t return my emails.”
Luna understood and explained Sally was assigned to stay in the room of a COVID-19 patient and worked extra long hours. And Mina was gone that week. Luna repeated, “Call me or Jessica any time and we’ll get help. I don’t like emails.”
I was pleased to be able to reach out to them and learn why Sally hadn’t responded. Luna had more news. COVID-19 restrictions should lift soon as everyone has tested negative. Lynne will be able to walk outside. She and her exercise director are going to bring down an exercise machine from the gym and try it for a week in her room. If it works, I’ll have to order one for her.
Luna senet me a follow-up email, “Thank you Jim, I appreciate our conversations so much.” She said a favorite caregiver of Lynne’s knows TV shows she likes and is going to make sure she is set up throughout the day.
I thanked her for our open conversation. That day I saw the plan in action while Lynne and I video chatted and she watched television. The TV caregiver came in and said, ”I know a show you like so you don’t have to watch tennis all day.”
She liked it. We called her sister to sing happy anniversary. She said, “This Covid-19 thing isn’t so bad. We’ll get through it.” We chatted for an hour-and-a-half as I did some work.
That night she woke me up at 9:30 pm and again at 11:42 pm when she was in her regular clothes. She couldn’t sleep. The second call I told her she was in the safest and best place she could be and ordered her to go back to bed.
I couldn’t sleep. I was so stressed I worried about my heart. I had a cardioversion two weeks ago to restore a normal rhythm and suddenly I felt like my pulse was racing. I transmitted my heart data from my pacemaker to Boston Scientific. I took my pulse four times on my home blood pressure kit and had pulse ratings 115-116. Doctors said they get worried at numbers over 100. Should I call a doctor? I waited until morning. I emailed Luna that we needed to reduce wake-me-up calls because of my heart.
Then I was embarrassed. The cardiac care nurse said my transmission showed the heart was normal with no irregularities. I asked why that was. She said, “The question is, how do you feel right now?” I felt fine.
I emailed Luna that I was felt foolish and confused. She didn’t have to worry about a dad who was worrying about a heart he didn’t have to worry about while he was caring for his daughter. I doubt that comforted her.
Our family is recommending we set up a daily schedule for Lynne. Aegis is effective at the daily activity programs they run at regular times at regular hours before the lockdowns. Lynne participated in more of them than any other resident.
Our idea is to schedule times for music, exercise machine, TV and video chats. Staff could give her tasks as regular times, such as folding clothes, rearranging her dresser drawers, finding a book to return to Dad, coloring Aegis posters for residents. I discovered coloring greeting cards online. Lynne could color them, and I’d address and stamp them and drop them in mail.
Luna emailed, “I love the coloring greeting cards idea.”
We can do this because we keep talking and sharing to make Lynne’s life better. And because we keep caring for each other to roll with the rollercoaster ride.
Lynne called. “I’ve got COVID.”
“I’m sorry,” I said, startled. “But you’re healthy, good lung capacity…. Hey, wait a minute. Nobody’s called me. Someone would have called me. I’m going to hang up and call you back.”
The concierge confirmed no residents tested positive and they’ll test again in a week. Following those results over time they could remove restridtions. I gave Lynne the good news. She was happy with that. We chatted a while. She said, “I can’t stop crying.”
Her camera wasn’t on so I couldn’t see her. She kept fumbling with it until she turned it on. She was pleased with herself. The chair was not in front of the Facebook Portal so I couldn’t see her. She started crying. “This COVID thing,…..”
“Of course you cry. You’re in a lockdown.”
“I feel like a baby.”
“It’s healthy to cry. You’ve got music. You can tell Alexa to play music.”
“What music do you want?”
“Alexa, play Lyle Lovett.”
Alexa did. Lynne stood up and danced. I saw half of her dance. She sang the lyrics and danced to her bed. And she cried again and sat down.
“Lynne, I can’t see you.”
She moved the chair over. She told Alexa to stop. She saw my face. “What happened to your nose?”
How did she spot that, I wondered.? I had a bandaid because my sleep machine rubbed my the paper-thin skin on my nose and caused it to bleed until it scabbed over. When I saw it in the morning I was too sleepy to know what it was until I picked it off. It beld because I take blood thinner so I taped it tight to stop the bleeding. She doesn’t miss a thing.
We chatted. The TV wasn’t on and it was time to go, so we hung up.
She woke me up at 10:15 pm with a staff caregiver because Lynne was sad. I tld him the Alexa was off because I couldn’t drop in on her. It was unplugged. I told him tennis was on TV so he looked for the remote and to find the channel manually. I turned on my TV. She and I watched tennis like Karen and I used to do. We talked about Serena’s hair. I said it looked like a mop on top of her head. She said, “Its’s beautiful. It’s purple.”
It was purple. We shared memories when she played doubles tennis in high school and won fifth in the state championshp. I couldn’t remember her partner’s name. “Sophit. She came over here to play tennis.”
“You have a better long term memory than I do.”
She laughed. “Dad…”
We talked until we were past tired and decided to go to bed. Nothing had worked quite right: thinking she has COVID, forgetting she could turn on music, unpluging echo, tutning off the video camera, crying, calling me after I went to sleep, wanting to go to bed but unable to without caregiver help and afraid to go out the door to ask.
I told her I’d call the concierge. We hung up. The concierge said she’d go right up and get her in bed.
I tell myself to remember we chatted, we laughed, we cried, we danced, we watched tennis, we shared memories and we persisted.
I’d dropped in on Lynne three times yesterday on her echo dot and she thought she’d done something wrong because she couldn’t go downstairs to see the concierge. Frustrated, I emailed her assistant director, Wanda (not her real name), to please see if one her people could cheer her up. I gave her some ideas: TV with her favorites on Amazon Prime and Netflix, a foot bath, calling me for a video chat, searching for her daily bag of trail mix attached to a photo of her sons and nieces eating ice cream. I thought she’d remember that photo.
Wanda delivered, and I thanked her for a nice video chat with Lynne last night. She called with help from a caregiver. Lynne sat with feet in the tub basin filled with lavender Epsom’s salts and a big grin on her face. They were laughing. Lynne said it felt decadent. She lifted up her foot in front of the Facebook Portal to show a wet, ruddy, healthy foot. We chatted until she stood up and wandered toward her door to ask for help getting ready for bed. We had a good night.
Wanda responded. “That was me. I had come in and out a couple times. I’m so glad it set your mind at ease. The lavender is a huge hit, this is a great night time ritual for her. We put the crickets ( her favorite) on the sound machine before I tucked her in, she seemed very happy indeed. I will make sure care staff know to make this a part of her nightly routine!”
I appreciated Wanda testing the idea and planning a regular routine. I asked if a caregiver could talk into her echo dot, “ Alexa, Drop in on Dad.” We could talk through the echoes because Lynne fiddles with the Portal during video chats: turns it off, turns sound off, and moves away from the camera. Maybe we’ll get video chats to work better again.
In the meantime I’m grateful we have staff who can give us new routines that make for healthy self-indulgence.
Aegis living reported COVID-19 invaded Lynne’ secure memory care floor. They are “managing four cases of Covid-19. Three of the residents are completely asymptomatic. One is showing mild symptoms and is recovering nicely. We have placed the four residents who tested positive under full droplet precaution,” [which requires the residents isolate in a room and everyone in the room wears a mask and PPE].
“Dedicated staff care for only those four residents. All caregivers who work in that comfort care unit only work in that unit.” Three caregivers were also infected and are quarantined at home.
I believe this partially explains her anxiety and inability to handle the video chats we tried yesterday. I dropped in on Lynne on her Echo dot which doesn’t allow me to see her.
Her first words were, “Dad, I’m not in my room. I’m supposed to be in my room.” I assured she was and phoned her Facebook Portal. It rang and rang.
“Answer it honey.”
“I’m afraid to touch it.”
“You can’t hurt it. Go ahead.”
“I guess I’m not doing it right.”
“Keep trying.” It didn’t connect. We talked briefly. Her flip flops are comfortable. They’re fancy. Pause …
“I’m afraid I’m going to be in trouble. I have to go.” She walked away.
My frustration skyrocketed. Why can’t she press the face of the Portal? She has before. It’s infuriating to be unable to visualize what she doing and give basic help like using her finger to touch the Portal.
Then I remembererd she was anxious, believing she wasn’t in her room and had to get back to it. She can’t be losing all her mental capabilities this rapidly. Or is she? I get torn by two impulses: the shorter her end stage, the better – get her suffering over; and, we must make her better now, somehow. It feels like it’s getting harder daily. Nothing works for very long. And nothing works when I can’t understand what is happening, when I can’t sit beside her.
After a while I dropped in again. She was there and seemed more cheerful.
I asked if she wanted a video chat. She paused.
“No, I better not. I got too anxious.”
Short short story
7/18/20 Christine, an RN on Lynne’s memory care unit sent me a message that “Lynne was having pain and discomfort in her left foot and first couple toes, and she thinks she has a hammertoe. I approved treatment with their podiatrist scheduled for a visit.
I was pleased. Lynne has mentioned foot pain periodically during her stay and we had frequently alerted revolving staff in her old apartment. We’d traveled to Bellevue to buy new tennis shoes that she loved for CrossFit workouts. In her new memory care unit we alerted staff about her favorite tennis shoes and red clogs. Her red clogs were fashionable and easy to slip on. A nurse told me the heels on Lynne’s black clogs were unsafe. They were from a different manufacturer from her red clogs, so I bought black clogs that matched her red ones.
Karen had always helped with her foot pain because, as she said, “Lynne’s got my feet.” That’s a bad inheritance. Karen had four foot surgeries, none completely successful. I watched Karen struggle with hers and she managed Lynne’s. Lynne had a podiatrist who helped her.
I didn’t know if Lynne’s pain was shoes, a hammertoe, a bunion, other toes, pain from a prior surgery, nails or whatever. Now we had a podiatrist scheduled to deal with it.
7/22 A friend of Lynne’s sent me a note that Lynne complained about pain in her feet. Others had also told me she’d complained it. I assured her friend we were aware of it and a podiatrist was scheduled to visit next week. It seemed solved.
7/26 On Sunday night, eight days after Christine’s email, Lynne called in tears about missing Mom and “…they they think I’m crying like a baby.”
Ever since her move, I was getting these calls even though she and staff seemed happy with the move. She was more engaged, perceptive and helpful. However, her medical care assessment indicated her mood swings were still severe. I focused on that becase I believed she was improving. Her moods swints were natural when adjusting to a location.
Over a series of emails and calls staff and Lynne’s sister and brother convinced me her sadness and anxiety are severe. She was facing residents whose minds and bodies were in worse decline. She had said, “I’m afraid.” Counselors at Aegis told me, “This is the hardest time.” We talked and I finally got a few laughs out of her. At the end I asked about her toe.
“Oh, it comes and goes.”
“How about now?”
“It’s a go.”
“Is ‘go’ a hurt, or doesn’t hurt?”
“Oh, it hurts.” She was in her black clogs, which was often when she complained. Why? They matched the red clogs. I was frustrated. I thought we solved that. Eight days and nothing changed even with a podiatrist visit? What did I have to do to stop it. I decided to calm down before venting and write this email in the morning.
7/27 6:53 am “I’m not sure who to write to, but I want better care for Lynne’s toe.
Even after all this time we’ve worked on her toe, she called last night because it hurt. I get the feeling that caregivers who dress her are not fully aware of the pain in her foot and which shoes she should wear.” I added that I highly respecdt their care.
7/27 The Medical Director responded that the podiatry visit was rescheduled because of a new lockdown from COVID-19 infections in Lynne’s memory care. That explained why Lynne felt such tearful loneliness Sunday night—nobody was there to talk to when she leaves her room.
7/28 9:35 am The next morning I emailed Duke, the general manager, copying the other managers. I used Ben Franklin’s technique of asking questions rather than ranting. I asked:
- “Why wasn’t I informed Lynne didn’t have a visit from Podiatry?
- “Why don’t we have recommendations to limit Lynne’s options for shoes that work with her current pain problem? Why isn’t there an understanding somewhere in the room, or reports, that Lynne has ongoing toe pain that needs to be monitored by everybody?
- “Who should I count on for communications about her care?
- “I’d like to have an explanation of her pain and her treatment as well as guidance for dressing her.”
Shortly after I sent it, Lynne called me through her portal because she was lonely and her toe hurt. I called the concierge and asked him to get someone up there to help. Very soon a caregiver arrived who took off her black clogs and put on blue tennis shoes.
Almost immediately a new care giver arrived, Renaldo (not his real name), under orders to examine her feet. As I listened through the portal, Lynne explained she had surgery on her right long toe and that’s where it hurt. He kept questioning and listening to her. He comforted Lynne. He comforted me. A med tech arrived with pain medication.
Renaldo left and came back after reporting to Sheila. Boy, was I uninformed. Lynne had pointed to several different toes on both feet as the source of her pain. He had squeezed every toe and checked every nail – no pain. He asked Lynne to show him which toe had the surgery. He squeezed it again and Lynne didn’t react.
Renaldo, Lynne and I developed a plan to replace her clogs. Lynne liked flip flops even though both of us recommended open toe sandals as an option. I gave up and ordered two different cushioned flip flops. They cost a lot less than black clogs.
Renaldo mentioned foot baths and Lynne said she loved those. So I splurged on a foot soaking basin and a supply of tea-tree-oil-foot soak with Epsom salts. If staff could keep her feet in that tub, she and all of us would feel relief.
7/28 12:29 pm Sheila thanked me for sharing my email to Duke and sent me a plan that shared my email with caregivers, required caregivers to report signs of pain to med techs and nursing, and reminded them Lynne must wear footwear that doesn’t rub her toes. The clogs were removed from her access.
Wanda called and introduced herself as the direct manager of her caregivers. They expect to receive COVID-19 test results in a day or so and be able to schedule podiatry.
8/1 Wanda sent me the attached photograph of Lynne loving her foot bath. She loves the flip flops.
8/2 Last night was I wondered why I was inattentive to her pain? Why did I brush aside comments from friends without looking into it more? How long did I let her suffer without finding relief. I reviewed my emails and realized I was focused on her severe moods and cheering her up. I felt staff was caring for her feet.
I’ve got to be more attentive and assertive about her pain management, actuallly all of her care. I knew that. Why do I have to remind myself of that at 79 years old?
A caregiver in Lynne’s memory care at Aegis was infected with COVID-19, halting face-to-face conversations through plexi-glass in their “Outdoor Living Room.” We are restricted to video chats, again.
Friends from high school to today have remembered she loves music and gets energized to dance. In 2017 co-workers from the self-labeled Microsoft Talent Posse remembered an outdoor Lyle Lovett concert, so they checked his schedule. He was coming in a few weeks and they went as a group. Leslie, from high school, said girl friends revved up pop hits to dance on the furniture and shout the lyrics. She saved her playlist and promised to send it to Lynne.
At our last outdoor chat, I read titles from Leslie’s interview to Lynne. She giggled at that memory. I noted ones that made her smile, or say, “Oh, yeah.” Footloose was her favorite. I created a playlist of popular rock songs from her teenage years through college.
I couldn’t play songs with her on my phone after the lockdown. It’s hard for me to make her laugh by being a funny comedian or an energizing caregiver like hero Dad’s are supposed to be. It’s a long, lonely feeling of failure when everything I say is met with a slack face and respectful silence, or statements like, “I’d better get back.” Besides, I like music too.
Alexa had to help me. Could I use my Alexa echo to create a playlist on Lynne’s echo dot? I didn’t find any way. Lynne would have to give Alexa the commands. They’re easy commands, but I doubted she could repeat them accurately. I rehearsed how to coach her and waited for her call – my calls rarely find her in her room – she busy socializing somewhere.
She called last night and leaned forward so I saw the top of her head. I fumbled through my rehearsed lines but finally got it. I said, “Tell Alexa to create a Lynne music playlist.” Lynne frowned while Alexa next to her said she’d create a playlist. I whispered to Lynne, “Say Alexa, play Night Fever.” She couldn’t remember all the words. I said it louder. Alexa played it. Lynne sat up and tilted her head, puzzled by the sudden music. I said, “Alexa add this song to Lynne Music playlist. Alexa obeyed.
Next I played Staying Alive. Lynne began singing lyrics with a smile. We added it to her playlist.
Lynne chuckled, “We’re going to get in trouble.”
I said, “I’ll bet you won’t be able to sit still at the next one, Alexa, play Footloose.” Lynne stood up and danced. I took a picture.
We played a few others. She told me I always make her laugh, and she loved me, and we’re going to get in trouble. Finally she decided it was time to return to her people and slowly walked out of her room.
I said, “Alexa, turn off.”
We had fun. But I went to sleep wondering if there was some way I could do more to fire her imagination. I miss listening to her talk and laugh. I miss her energy. She’s slipping away.