A week ago I received a report that the pain in Lynne’s left foot showed great improvement: she was wearing the black shoe I bought in a little bit bigger size than her other shoes, her fluffy socks that were in the drawer instead of tight pull-ons, and a bandage on the bottom of her foot staff. Staff said she had left it alone. The swelling had gone down. For the hour I was there she never once winced in pain or tried to work with her foot or her shoe. I hand fed her bites of mini-Reese’s peanut butter cups. She drank all of her Frappuccino so fast I switched to water, but she made an ugly face and looked at me. I apologized. She nodded her head.
I finally said I had to go. She said OK. I felt good when I left her in her reclining chair with a peaceful face. On the way home I thought of what her life was like after I left. Did she spend hour after hour dozing in that chair? Did she strain against the invisible barriers that weigh her down, confuse her, anger her, and terrify her, hoping to break free to find human touch, connection, clarity, love, or meaning?
That night I listened to Let It Be by the Beetles, over and over and over, hoping for an answer.
When I find myself in times of trouble
Mother Mary comes to me
Speaking words of wisdom
Let it be.
And in my hour of darkness
She is standing right in front of me
Speaking words of wisdom
Let it be
And when all the broken-hearted people
Living in the world agree
There will be an answer
Let it be
For though they may be parted
There is still a chance that they will see
There will be an answer
Let it be.
And when the night is cloudy
There is still a light that shines on me
Speaking words of wisdom
Let it be
Let it be, let it be
Let it be, yeah, let it be
Whisper words of wisdom
Let it be
I had heartwarming caregiving yesterday afternoon with Lynne, an experience I am convinced she enjoyed as much as I did. I also found out I had checked up on weight later than I did.
She welcomed me in surprised relief with a hug so strong I had to brace my feet to keep from tipping over backwards. At the same time, her body felt thinner, triggering my worry that I had not check with caregivers about her weight and whether she getting more than the traditional portions. We strolled back to her room where I told Alexa to play music from Elton John. Despite Rocket Man soaring in the room, Lynne sat quietly focused on the floor more subdued than typical. She quickly sucked up apple juice and we opened the picture book of our trip to Alaska. Soon, she had the energy to aimlessly roam out of her room to the general meeting area. I suspected the sugar had picked up her mood.
We sat at a table where a caregiver thoughtfully stopped to tell me she was doing very well with help getting dressing, bathroom, shower compared to earlier resistance. I asked him how much she weighed and how often they weighed her. He left to bring back a chair with a scale on it. Lynne willingly climbed in and weighed 126 pounds. I said she weighed 134 when she entered, so she’s lost eight pounds in a little over a month. He said she eats everything, so I explained she had double portions because. He said, “She’s like an athlete. Exactly what I wanted him to understand. A Med tech joined the conversation. After the same explanation the MedTech said that she would make a note in the file to feed her more. I felt pleased the caregiver and MedTech responded immediately to get the scale and make a note in her file. And got over my guilt at not paying attention.
I told the receptionist about the good meeting and she asked if I had told the general manager. No. Well, he’s in his office so you should go tell him. When an experienced receptionist tells me to talk to a manager, I do it.
We had met when he interviewed Lynne at Aegis where assured me she would get extra portions, adding they have no limits on portions. I had not known what I was going to say because it’s delicate to tell him he and his staff were not feeding her enough, but by the time my butt hit the chair I said, “I want to talk to you about a fantastic experience with your staff.” He thanked me profusely and turned to send a note to the staff and head nurse when I got up to leave.
I believe Lynne enjoyed our experiences getting energy from treats and help from caring people. I saw a sparkle in her eyes before I left, and she casually accepted our time was over. I always wonder if she enjoys our times as much as I do, and she enjoys them as much as she did long ago before she was diagnosed. I believe those visits can make feels normal with me, her dad, her sons, and her friends like Nancy. I pray I am right.
On Thursday, September 1, we added sons Herik and Simon to be durable powers of attorney for Lynne. Afterward, we moved Lynne to a new home at Quail Park Memory Care.
Henrik and Simon agreed to be co-DPOAs if I was unable to perform. A Notary had to be convinced Lynne understood the changes and approved of them by signing the documents. I believed she understood and wanted the changes, but wondered whether she could sign the documents. If not, Lynne would have to convince the Notary to sign for her. So I enlisted the help of Nancy, and friend LynnR, to help Lynne get approval and be witnesses. They have had consistent success enlivening verbal statements from Lynne.
I had prepped Lynne the night when we had walked the halls. I asked her, “Do you want Henrik and Simon to have powers of attorney to help Dad take care of you?” She listened but kept walking. Five minutes later I asked her the exact same question, “Do you want Henrik and Simon to have powers of attorney to help Dad take care of you?” She listened but kept walking. I asked her the exact same words after another silence. She immediately said, ”Yes.” I texted Nancy to give her the exact words to use.
I had wrestled with questions the night before. Could Nancy and Linda get her to the building? Would she sense something and resist? Nancy had told Lynne she would be moving to Quail Park and drove past it. I had promised her night after night, “I was going to get you off this floor.” She always accepted it in silence. Would she resent being in a different setting? Would she miss the staff who had told me for two days they would miss her because she was a caring, active, courageous person?
On Thursday morning Clemens, Simon and I met in Lynne’s room after she had left. Clemons and Simon broke down Lynne’s queen bed for shipment to her cousin. We loaded all of Lynne’s clothing, teddy bears, dolls, painting, photographs, and toiletries and drove to Quail Park to get there before Nancy and Lynne arrived so we could prepare her room. Lynne had arrived before us. Nancy and LynnR kept her entertained while we hung up her photos, placed dolls and teddy bears on shelves, organized her clothes in her dresser and closet, and hooked up her echo so Alexa could play music for her.
“Oh, by the way,” Nancy turned around to say. “Lynne signed the documents.” I was ecstatic for Lynne. She was still in control of her life and we had made her feel that. What a glorious satisfying feeling that was for me.
She ate lunch with Simon and me and then watched a TV program with other residents in the TV nook. After a couple of hours Lynne began to get anxious and aggressive. We called for the Heard Nurse who met with Simon and me about her care. She indicated Lynne was following a normal pattern. A visiting physician would provide advice on medications to continue calming her. The head nurse usually doesn’t recommend family visits soon after the move, but Lynne , so the nurse encouraged us to continue because Lynne welcomed visits from all of us
Today is Monday as I write this and Lynne continues to progress through the ups and downs the head nurse described. Nancy, LynneR and I have had to remind staff Lynne needs puree’ food, medicine crushed in puree or Applesauce, pants that stay on, and pain in left foot from sores. At times she has vigorously resisted help getting clothes on and going to the bathroom with caregivers she does not recognize. I helped Lynne permit a caregiver to take her shoes and socks off to change her pants because they needed a belt.
Lynne and I rested on a quiet patio Monday afternoon as she sipped on a Starbucks Frappuccino. I said Quail Park was in a quieter neighborhood with less construction equipment, trucks and sirens. Care would be better, the residents on the floor were more tranquil and fewer of them. She ate a nice full lunch. I walked up the street and bought her a belt for her pants and looser socks for her feet.
Nancy called to say their visit was similar, but Lynne needed new shoes. Then she said, “Oh, and I asked Lynne if she liked it. She said, ‘Yes I like it.’”
Visits witih Lynne can be hard when we see her less vivacious than our cherished memories of her. Understandably people are afraid to visit, including me, when I don’t have a way to cheer her up, so it’s easy avoid it. And yet her condition nags at us because we love her. I have learned that my times, or family times, or friends times, are always meaningful for the visitors, and almost always meaningful for her. They are meaningful for me and others because we tried to give Lynne a better time than she would have had without our visits. Below are stories of simple visits that demonstrate visits are almost always meaningful for her. Lynne told one of her friends told her to go away, so she did, and came back the next day to share a cheerful visit. Imagine how meaningful it was for Lynne’s friend to have the courage to immediately visit again when Lynne was glad to see her.
The good news is Lynne is more responsive and walking more upright since we changed her medications. Last Sunday friend, Lynn, sent me a message. I helped Lynne eat lunch and gave her a cinnamon roll which she ate as we walked outside. We laughed quite a bit and complemented each other on excellent hairdos. She was in good spirits. Obviously friend Lynn was in good spirits about her visit.
Her boys and Pam, my other daughter, saw improvements for an hour-and-a-half lately. She pointed at me and told them. That’s my dad. She pronounced the title on a poster: Mardi Gras. We sat in the lobby and talked. I called out a to resident close by, Hello. How many boys do you have? Lynne answered immediately, Five. I have rarely seen visitors with her. She sits with other residents in the lobby. They tell Lynne, You’re lucky. Your dad comes to visit you. I know those statements make her happy. They make me feel more meaningful.
Today when I met Lynne she was sobbing, tears flowed down her cheeks. She wrapped her arms around me, saying, She took it all. She took everything.
Really? Everything?
Yes, everything.
I pulled back and looked her in the eyes. Hon, I was just in your room. She didn’t take it all. It’s all there.
It is? Well OK. I lifted her mood and made me feel meaningful. I put on her headphones and backpack to hear the Sister’s Music list from her sister Pam. Lynne gazed up and nodded her head. She mouthed some words. Her body slightly swayed to the music. I was glad I brought the headphones and Pam sent a list. It kept her mood mellow. Pam and I both feel more meaningful about her music. I am grateful for Pam’s care.
I walked beside her, slipped my hand under hers and left it open. Sometimes she moved her hand away. Sometimes she let our hands touch. Sometimes she grabbed my finger, three fingers, the whole hand. Sometimes a grip. Sometimes gentle. It made her more connected, secure, stable. I felt more meaningful. I steered her up to the 6th, 5th, 4th, 3rd floors and the lobby. She studied photos revolving across television screens on every floor. She often turned to smile at me. We were both getting some exercise. I felt more meaningful. I waved to her when I left her floor before lunch. I felt I improved her feelings for a little while. I felt more meaningful. Don’t let fear keep her from giving her a more meaningful journey.
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.
People in late stages of dementia can relive memories wrapped in their five senses and heartwarming emotions. Those are the best times for Lynne and me now. I’d like to learn more ways caregivers can help loved ones relive those memories. Recently, she was snug in the front seat of my car listening to Neal Diamond music and singing his lyrics as we drove through a rainy night. She looked out the window at parks and restaurants in her Madrona, Leschi and Capital Hill neighborhoods, interrupting her singing to briefly comment on the scenes. On a video chat she listened to me read every word of Sharon Olds’ poem, First Hour. It’s about a newborn’s thoughts. I told her that and when I finished she immediately remembered holding each of her three newborn boys. I, we caregivers, want ideas to reach deep into more of those memories so we can relive them in restricted, confusing, anxious times. I have read recommendations about how to assist Lynne’s behaviors when I’m with her. She opened a back door of the car to sit on the lowered seat, but said she couldn’t get her legs in. I guided her into the passenger seat. She quickly tangled her neck in the seatbelt until I clicked it in for her. I’d like more training on drawing out the deep memories, especially when I can only care for her on a video chat or sitting alone with her, even then unable to touch her without gloves and a shield, let alone hug her. What senses and emotions help draw out pleasant memories? In the car, did feeling snug in her passenger seat relieve her anxiety and let her focus on the scenery? Was it the music? The lyrics? Me by her side? With the poem, did it help to feel secure in her favorite chair? Me introducing the poem by talking about newborns and mothers? Dad’s familiar voice? The flow of the lyrics? I search for connections to memories by watching, listening, asking and showing her pictures to see what settings, words, images and names excite her senses and emotional experiences. I need help. And I confess I feel pressure because her reservoir of memories is draining away rapidly. Can I get help from our worlds of virtual reality? Lynne had a fabulous time with friends at a Lyle Lovett concert two years ago. Could she wear virtual reality goggles and earphones to sing and dance with fans and friends at concerts like Madonna? Could she dance in sock hops on reruns of The Dick Clark Show? Could gaming programmers develop videos for people with dementia where they could hug avatars instead of zap them? Could exercise equipment manufacturers mimic virtual scenery while residents exercise on stationary bikes? Could we collect videos from family and friends to rerun in endless loops like TikTok videos? Could we download YouTube videos? There must be people who could recommend more ways to raise up Lynne’s memories for us to enjoy in the present Covid restrictions — experts for caregivers, architects for room and building designs, owners of assisted living facilities with lively experiences from households or neighborhoods. Please help.
Aegis reviews Lynne’s behavioral symptoms quarterly. Her sleep patterns were disturbed by the switch to standard time and the increase in nighttime. The medical director prescribed medications for longer and more regular sleep.
Lynne repeats herself, called looping, about every 30 seconds when she initiates conversations. She waits outside the care director’s office for her to come back rather than sit with other people. They’ve had another COVID case on her floor, so she’s in lockdown again. She often calls me to say it’s difficult.
I said recently, “Well of course it’s hard honey, you have a disease, Alzheimer’s.”
She said, “I do? Maybe that’s what it is.”
Now I use short sentences to tell her stories of current events, even the election, or long-term memories of her boys, her mom, her friends. If we meet in Outdoor Living, I’ll bring her a vanilla milkshake from Dick’s Burger’s. She thanks me, listens, comments appropriately, and searches for words to add something. She’s very pleasant most of the time. When her mind wanders after 20 minutes, I ask her if it’s time to go.
Lynne and I wanted to give Aunt Jane a birthday present on her 82nd birthday. She is my sister and Lynne’s cherished Aunt who had the courage to throw off society’s expectations of housewives, and serve the under privileged. She lobbied for compassionate legislation for children with handicaps in Colorado, lived with children in impoverished orphanages in Mexico, counseled Guatemalan refugees who fled the genocides in Guatemala until she returned with them broker peaceful returns to distrusting survivors. Along with those missions, she inspired her entire family to reunite and embrace her independence. I gave Lynne the phone so she could sing happy birthday to her while I shouted it through the plexiglass in the Aegis Outdoor Living Room. Then Lynne had a private conversation with her. Jane is a talker. Lynne is a listener. She focused on every word. I heard Lynne’s responses: “Oh, yeah.” I’m not sure.” “Well, I have a lot of friends here.” “It is what it is.” “I can see family.” “I get out and do things.” “I’m never sure.” “They have us do things, you know.” Suddenly Lynne said, “Oh, no!” She put her hand over the phone and said to me, “Cat broke her toe.” Cat is Lynne’s cousin, a nurse. I asked, “Is she still working?” “Oh yes.” Finally, she tired and handed the phone back to me. Jane said, “We had a great conversation. She’s handling it so well, accepting what is.” And that inspiration was another gift Lynne gave Aunt Jane. And me. And everyone.
Lynne called. She was quiet until saying, “She’s nice and I don’t want to commit and not follow through. I feel like I fit in. It took a while.” I agreed she is nice (I had no idea who she was talking about). “But you always follow through. She helps you walk. You get a good sleep. You eat good food. You ride your bike. You listen to music. You always follow through.” She agreed and I piled it on. “You always followed through in high school. I was writing from your journals and letters today. You didn’t want us to buy a house on a hill because it was too difficult to walk home from school. We bought the house anyway, and you bought a scooter you hid in your friend’s garage, so you could drive up. You, your friends, and your brother drove all over town. I never knew.”
She laughed. I added another story. “You felt the chemistry brewing with a causal boyfriend after talking with him throughout a ballgame on a date with a different boyfriend, followed by a month of eye contacts, chats in the hallways, teasing from girlfriends. Finally, one day he told you to call him if you wanted to see a ballgame with him and his brother. That was your chance to find out if he was serious. You said, “Call me if you want me to go with you.” “You knew he didn’t know your number. You waited. You prayed. Finally, he called. You knew, you knew, he would be your first love.” Lynne smiled. “Yep.” I piled it on some more. “Your good friend on the yearbook staff told me you were the one who organized work, because she was such a flake you felt you had to keep her on track.” Lynne laughed but objected. “She was not a flake. She did a lot for us in the yearbook. We worked on copy together.”
We paused. “OK, Dad. I’m ready for bed. I love you.“
She calls and I’m there for her. I can tap into her joy to let laughter flow over us and rinse away fear for a while. I’m learning more intimately about her and loving more deeply as I learn. I’m learning more sympathetically about me and healing more deeply as we share. Being there is a balm for the years I was away. I am living the lyrics of Kris Kristofferson’s song, Loving Her Was Easier: “Coming close together with a feeling that I’ve never known before in my time. Wiping out the traces of the people and the places I have been. Dreaming is as easy as believing it is never gonna end. Loving her is easier than anything I’ll ever do again.”
Lynne’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!
