Alzheimer’s Weekly reported Alzheimer’s patients (Lynne) often nap because the disease damages neurons so the system in the brain to keep her awake is gone. It’s not because she doesn’t sleep at night
Treatments to improve the “awake” system need to be tested. No such tests were reported. In the meantime, we might ask medical staff to reduce sleep medications, which are most likely ineffective. Tags: Alzheimer’s caregiver dementia father-daughter
LynnR showed how visits from good friends liven up Lynne. Lynne pulled her lunch bib over her head. I asked her, wait until lunch is done. She’d say OK. I sang waiting waiting, she sang waiting waiting with me. We cracked up. It was sweet. Tags: Alzheimer’s caregiver dementia father-daughter
Four years ago Karen slipped away in a bed two floors above Lynne. She had moved there from her hospice at home in Redmond to finish every day with Lynne. She looked at the 4 of us at the foot of the bed and said, “I am looking at a miracle.”
Tags: Alzheimer’s caregiver dementia father-daughter
The photo was taken when our family celebrated dinner after moving Karen to be with Aegis for hospice
The nurse said Lynne walks in the mornings, sits in chairs before lunch, walks some in the afternoon, sits in chairs. She eats well. She weighs 118, in a stable range for 6 months. She was glad to see me today. Nevertheless dementia, we persist.
Tags: Alzheimer’s caregiver dementia father-daughter
Visitor feedback: Visits not that difficult. All our love has sustained her these last years. She felt the love you brought. I hope there is a part of her who knows she is loved by me and many. Me: I believe she feels it. She is blessed. Tags: Alzheimer’s caregiver dementia father-daughter
At least 8 visitors in the last 10 days gave these reports: She was her sweet welcoming self, less alert, thinner, tired, distant, & agitated. She held hands, sat up, laughed, consumed pudding & iced vanilla coffee. Let me brush her hair & rub in skin lotion.
I moved 30-minutes away from Lynne. For 3 days I wrestled with details of the move for me and doubts of my vow to her. Today we reconnected marvelously. I said, “Christoph’s doing better.” She said, “He’d better.” Our bonds will stretch and hold. With a kiss. Tags: Alzheimer’s caregiver dementia father-daughter
was developed in 2003 to provide care for late stages in Alzheimer’s & dementia. Staff use it in the USA and many care homes worldwide to give loving touch. Visitors mean as much to Lynne as ever. Plan to visit & use these ideas.
Namaste uses loving touch:
caring, gradual, and individualized: massage with skin cream of hands, feet, (I include calves & forearms). Moisturizing scented cream to the face, brushing her hair, scalp massage, a drink, & tell her who loves her repeatedly.
Put the Namaste care supplies in a little bag to take with you.
This a video of country singer Jay Allen singing a song to his mo ther on stage. She has is 53 years old with early onset Alzheimer’s, the same age my daughter when she was diagnosed. Great song
Tags Alzheimer’s caregiver dementia father-daughter
We bumped foreheads. I said, I love you. Paused Henik loves you, paused, Simon loves you, paused, Christoph loves you. Named our family, her friends, co-workers. She listened. Laughed. Repeated it 5 times. She ate her entire meal..
Tags: Alzheimer’s caregiver dementia father-daughter
Today I talked about my move & her dancing, played her music list. She refused massage. When she sobbed into her hands, I touched her shoulder, said I’m here, she smiled; laughed out loud, I laughed; sipped a 30 gram dairy-based protein builder, I drank half. was fearful, I touched her, said I’m here, you’re safe & she relaxed; laughed out loud, I laughed; stared down the hall, I said, Gotta go. She kept staring. She loved me for ½ hour Tags: Alzheimer’s caregiver dementia father-daughter
Nurses have predicted Lynne can remain on hospice. Weight is stable. She’s unable to do the activities of daily living. Alzheimer’s steadily reduces walking, standing, talking, and recognition. We can’t predict how long this lasts Tags Alzheimer’s caregiver dementia father-daughter
Weight loss warnings in terminal stages are: 5% loss in 30 days; 10% in 180 days. Lynne’s weight has held steady the last four months since hospice and a 4% decline over the last 180 days. Her weight indicates her health is stable
Tags: Alzheimer’s caregiver dementia father-daughter
Last night Lynne was sleepy at dinner so she was fed in bed. She ate half her meal.
Lynne sat silently on the patio. I added music, talk, held hands. No reactions. Finally, Gotta go. “No.” “I’ll be back.” I grabbed the patio door. She yelled, No. I said, I’ll get someone. I felt like I abandoned her, if only for an instant.
Tags: Alzheimer’s caregiver dementia father-daughter
Lynne states clear words, usually 1, maybe 2 or more. After her 1st spoon of pudding, I asked, Is that good?” She smiled & nodded “Oh, yeah!” I decided to let her talk Alzheimers When I spoke, she watched me speak and make a motion with my head. We were communicating.
The results: Her words/Mine: No/OK, no. Never/OK, never. Take/What? (no answer). Just go/I will. Quiet/Gotta go. OK/Gotta go. She always listened to me. When she used a word she looked at me. So how much deeper can we go?
Tags: Alzheimer’s caregiver dementia father-daughter
Lynne sits in an armchair by the aquarium. Women visit. Tallthin1: most frequent, reaching out, offering something. ShortGray1: whispers advice and reports. One asks me how I am.. They’re usually polite, tolerant; at times, testy. Tags: Alzheimer’s caregiver dementia father-daughter
I avoid feeding Lynne meals. Eating entertains her. My visit is a 2nd entertainment – or not. I fed her Friday and stayed longer than normal. Next, I sat as she was fed & she enjoyed us both. I prefer meal visits Tags caregiver dementia father-daughter Alzheimer’s
8/16/23 Nancy is writing a memoir about her BFF, Lynne. Nancy & I share feedback on our drafts. Her vastly different experiences illuminate multiple dimensions of my extraordinary daughter. Nancy’s sharing & caring blesses both of us
I’ll move to a Retirement Center for better nutrition, exercise, socializing, medical care, safety, and rest. I’ll visit Lynne less often. I could delay a move 6 weeks to visit more, but I need better health soon. It hurts to decide that. Tags: Alzheimer’s caregiver dementia father-daughter
Lynne gave me “Nos” today. “Go away.” Kicking or pushing my leg or chair. I held my hands in surrender, “OK”. She relaxed as I obeyed. She said no to hallucinations. I asked staff to check her diaper. I’m grateful I could give her what she needed
tags Caregiver Alzheimer’s dementia father-daughter
Lynne walks an hour daily, then sits. She weighed over 130 last September, and was 122 in July, vs. 118 in May. Hospice sends 2-3 people per week. We plan an end-of-care conference to ensure Lynne’s final wishes are granted.
We recommend Hospice. Read the 5 Misconceptions about Hospice.
Tags: Alzheimer’s caregiver father-daughter. Dementia
Lynne’s early-onset #Alzheimers diagnosis when she was a mother with 3 teenagers has harmed the careers of her sons. Lynne’s 25-year-old twins and a 20-year-old, have delayed careers, dropped out of college, and postponed their plans to move out of their father’s home.
Their father and his partner halted their plans until the boys moved out. They have worked with counselors individually and as a family with little improvement. Lynne would want them to move on with their lives. Her brother and sister have offered to help.
I am frustrated because I have not made a difference, other than to support them in their lives. I have searched for resources to help but besides the usual suggestions about care for spouses or parents, we seem to be unique in Alzheimer’s literature.
The wreckage on this family is far worse than what I experienced caring for my mother when she was diagnosed as a retired widow. We would welcome your suggestions.
Tags: Alzheimer’s caregiver dementia father-daughter
Diagnos
Sunday, when I saw Lynne, she reached out to me. When Pam arrived , Lynne brightened way up with arms outstretched and almost rose out of her armchair. It had been months since Pam had seen her. Tags Alzheimer’s caregiver dementia father-daughter
Gripped hands for 45 minutes. When we grip she won’t let go even if I relax my hand. When she pulls I hold her hands still. I say, “Good. Strong. Keep it up.” Rests, looking surprised, curious. Danger when she digs nails into my skin
Tags: Alzheimer’s caregiver dementia father-daughter
Hospice volunteer, Samantha visited Lynne – very fidgety, took off her shoes and socks. Gave me a few words, laughs, and smiles. Would not go outside. “It’s really hard to visit, but I do think it matters.” Oh yes, Samantha, Hospice matters.
Hospice manages primary care for the final 6 months. Lynne’s team of caregivers has doctors and nurses, and also adds visits by a social worker, a chaplain, volunteer visitors, a guitar player, and a dietitian who give me their observations after their visits. Hospice is completely reimbursed by Medicare in Lynne’s home location. Lynne’s expenses are now lower. She has more visitors with a variety of skills and concerns. Lynne has better care and more often. I also get support from their care. I worry too many caregivers do not realize Hospice is available in the end stages of #Alzheimer’s.
Tags: Alzheimer’s caregiver dementia father-daughter
LynnR brings out the sunshine from Lynne’s soul. Happy visit with an animated Lynne. She greeted me with her sweet enthusiasm and seemed to want to talk with me throughout lunch, laughing a lot. When I asked her if she wanted more latte she said, “Oh yes, please.” Throughout her lunch she kept getting my attention with her big eye and expression once saying, “Perfect.” Then we laughed and laughed. She was very aware and welcoming of all who came into the lounge. My fav part of our visit was when she did her cute shoulder shimmy a couple of times to the music. We had a good time today. Tags: Alzheimer’s caregiver dementia father-daughter
Yesterday I recorded a pleasant glimpse of Lynne’s social life, no volume. She had an uninvited and familiar visitor. Lynne welcomed her, but eventually indicated she had lost interest. No offense taken. Tags Alzheimer’s caregiver dementia father-daughter
Researchers found that peanut butter and a ruler can be used to confirm a diagnosis of early stage Alzheimer’s. A nerve used for smell is one of the 1st things to be affected by Alzheimer’s. View the video.
https://alzheimersweekly.com/2023/06/alzheimers-scans-cost-peanut-butter/
With Lynne’s #alzheimers, #musicalmemories therapy with happy melodies releases dopamine, a neurotransmitter which causes a feeling of satisfaction. Listening improves well-being, maintains cognitive function, and reduces agitation. I saw it work!
I gripped Lynne’s hand and she held mine firmly. Usually she lets go, grabs her other hand and raises both over her head. Lynne thinks I’m a crazy #caregiver. I moved our hands to the beat and sang the chorus for Loretta Lynn’s Mama, He’s Crazy. https://youtu.be/zfF0aosgOr0
Next the nurse arrived with three spoonfulls of applesauce and medicine. I sang “Rockin with the rhythm of the medicine” as I played song by the Judds: Rockin with the Rhythm of the Rain https://youtu.be/NBn7HUZtpLA
She settled down, relaxed her arm but held my had. She focused on the music, nodding her head to the beat, even moving her lips at times. We sang the chorus of Give a little love by the Judds, Give a Little Love. https://youtu.be/ZLXm40x9vHI
At the end I played one of my favorites by Randy Travis, singing I’m going to love you forever, for ever and ever. She watched me, she rocked with me, and believe she believed me. Forever and Ever, Amenhttps://youtu.be/KtKXc_v2iLE
Tags: Alzheimer’s caregiver dementia father-daughter
Braden, with Continuum, a hospice entertainer & guitar player, provides music for Lynne. He said, “Yesterday we had a nice visit listening to music like the Judds, Loretta Lynn, & the Carpenters” No wonder I worry about boring Lynn.ags: Alzheimer’s caregiver dementia father-daughter
LynnR: We were happy to see each other after my week away. She enjoyed her latte, reaching for it over & over. Out of the blue she reached for my hand & asked “Are you OK?” “Yes, are you?” “Yes,” & laughed her sweet laugh. Tags: Alzheimer’s caregiver dementia father-daughter
Photo by LynnR, a weekly visitor and longtime friend, during her visit with Lynne
Carol and I stayed in the Chico, CA home of my daughter, Pam. We had a pool, hot tub, A/Cl, 2 dogs & a cat. I worried about feeling guilty, but I didn’t. Thankfully, Lynne’s boys, friends, & hospice volunteers visited Lynne. Lynne was excited to see me. Tags: Alzheimer’s caregiver dementia father-daughter
Braden @ Continuum hospice visits Lynne to provide music, sometimes with a player, other times he plays songs on his guitar. Lynne was in a good mood, smiling & laughing & listening. So many visitors, so many styles. Dad is incredibly grateful. Tags: Alzheimer’s caregiver dementia father-daughter
LynnR: Lynne enjoyed lunch & chocolate pudding. She no longer eats double portions. She walks less. I told her stories about hanging with her at parties & rubbed her back. I told her I loved her & she very clearly said, Me, too .
I chuckled at LynnR’s photo because she is so determined to devour whatever she drinks and clenches her straws long after she’s drained her drinks.
Tags alzauthors caregiver dementia father-daughter Alzheimer’s
I agreed with most people who wouldn’t change their healthy lifestyles if they had APOE-e4 genes. Only 14% of people have it My kids feel the same way. I’ll give the info to my grandsons. I doubt they will either.
#alzauthors #alzheimers #caregiver #dementia #fatherdaughter
Should I test Lynne & me for the APOE-e4 gene, a RISK gene for Alzheimer’s? 40%-60% of people with Alzheimer’s have 1 or 2. 1 increases my risk, 2 increases it more. But people with the gene don’t get Alzheimer’s, people without do. What should I do? #alzauthors #alzheimers
Lynne cycles from hello, seizing my hands, pulling her hands, sorrow, laughter, mouthing for chocolates, pointing at residents or nothing, sipping water, speaking Lynneeze, and round again. I just follow her lead & hope my presence helps
Tags: Alzheimer’s caregiver dementia father-daughter
Lynne sits in an armchair by the aquarium. Walkers stop by. Lynne greets, or ignores, or pushes them away. We’re not sure if they’re friends. They want to help, seem kind & caring to each other. A typical neighborhood?
Tags: Alzheimer’s caregiver dementia father-daughter
Lynne, with a wide sweep of her arms, said, “I love everybody! In the context of more verbalizations, two words came out clearly: Satan and hell. Later she clearly said, “I’m not going there!” Jim said, “It’s alright, Lynne. You don’t have to go there”
Carol, my lady-mate, wondered if she was: contemplating death, questioning what comes next, hallucinating, delusional? Carol remembered a book called Final Gifts which recounts numerous stories of the dying speaking in metaphor about their internal ponderings.
When Lynne angrily gestured again & said, “Get out of here!” Carol said, “You tell him, Lynne! Get thee behind me, Satan. I don’t believe in hell or Satan. I believe is God deeply loves you. Your Dad loves you. I love you. So many people love you.” She slowly calmed down.
Tags: Alzheimer’s caregiver dementia father-daughter
Samantha is a young hospice volunteer. Her 1st case was Lynne. I worried about their visits. A gift. Lynne hugs, dances, walks, sits, listens to her read. Said, “I am glad I got assigned to Lynne, a really decent, lovely person. We are too. Tags: Alzheimer’s caregiver dementia father-daughter
A mother had me hold her son while she loaded a gigantic feed bag into her truck. I still have a grampa touch, ready to be a great-grampa if ever so blessed. They cheered me up. Lynne had an anxious and restless day. Tags: Alzheimer’s caregiver dementia father-daughter
Lynne says, “My Mom.” She’s sad. I used to say, “Oh, she’s busy,” & distract her. I’ve changed. I believe it’s best to affirm and share sadness. I say, “I miss her too. But she can’t be with us now.” She nods, relaxes. Tags: Alzheimer’s caregiver dementia father-daughter
May I rub your foot? “Oh yes.” Big laugh. Her cycle begins: squeeze my hand, pulls it over her head; lets go; quiet 2 or 3 words in Lynese, big laugh .. foot feels good. Sole smooth. She let’s me keep rubbing. Peaceful
Tags: Alzheimer’s caregiver dementia father-daughter
6/7/23 Lynne and I can laugh and have fun. Especially telliing about Pam, her sister &her husband. They are traveling to France to see Tour-de France in Paris & the Alps & Pyranees. Our brief video. See for yourself. Tags: Alzheimer’s caregiver dementia father-daughter
Lynne sleeps more now. My visit was nothing more than a night watch, or a sleep watch. It’s peaceful. I get to eat her York chocolates. I’m jealous her friends get big open-eyed smiles. I’m thankful they do. Tags: Alzheimer’s caregiver dementia father-daughter
Lynne’s 3 sons visited last week. Christoph hadn’t visited in over a year. Like many, he couldn’t visit, wanted to, and then did. Did Lynne recognize him? Simon says, “Yes.” She said 2 syllables: “Chris – to.” Never give up.
Tags: Alzheimer’s caregiver dementia father-daughter
LynnR: Lynne was a bit drowsy Sunday. She’d walked around, ate a huge lunch. I’m surprised we got through all of it. She had difficulty getting out of the chair & was a little uncoordinated. She gave me side eye glances and laughed quite a bit. Her smile generated these comments: “What a gorgeous photo of her.” “I love that pic.” “I love the image.” “She looks full of Lynn spirit.” “Thanks LynnR for being her constant companion.”
Tags: Alzheimer’s caregiver dementia father-daughter
For 30 minutes my arm hugged Lynne in the shade of her patio and its spring blooms. We said nothing, sat still, reflected, laughed, gazed into each other’s eyes, & listened to Lynne’s dance music. We reveled equally in serenity. Alzheimer’s caregiver dementia father-daughter Tags: Alzheimer’s caregiver dementia father-daughter
Lynne’s sons visited. 1st time in months. They’ve avoided it. Too hard. I was proud of them. She didn’t seem to recognize them. I gave the boys Yorks & she ate from their hands. How do I advise friends who have visited lately?
Tags: caregiver dementia father-daughter Alzheimer’s
Carol & I had the pleasure to inform many people about #Alzheimers and the Alzheimer’s Association’s services in a Health Fair at Wesley Retirement Center. We scheduled 3 broadcasts to 5 campuses on Wesley University’s Program in the fall. Tags: dementia caregiver Alzheimer’s Alzheimer’s Association
Caregiving is guessing about mysteries.
11:03 am Hospice: We walked inside & outside, listened to music. Lynne didn’t lean on her knees; not distressed; a little spacey & calm.
12:03 Dad:
She cycled through laughter, jabbing her finger & lecturing people, smiling at me. Sad, fearful faces, hands covered her eyes. Said, I’m here, you’re safe. Calmed down. Hot? Zipped down her sweater. Orange hat bother you? She pulled it back on. Seized my hands to pull them over her head. Kicking my legs away.
1:00 pm Was she hungry? — Downed a full meal, drank Ensure, ate Reese’s cup. Was she wet? Just changed. In pain? Possibly. Nurse injected morphine under her tongue. Said I had to leave, sad face. Kissed her forehead, Calm looking away.
Tags: Alzheimer’s caregiver dementia father-daughter
I know Lynne feels my presence. She sips water, eats treats. Her eyes rest on mine. She talks Lynnese & English to me. She laughs at me with blue eyes. She wants my hat. She is sad when I leave. Every visitor senses it. Tags: Alzheimer’s caregiver dementia father-daughter
Lynne wore my hat. I ordered one for her. A Caregiver gave her one saved on the floor. Lynne’s chin went up to pose in her new hat. Her other hat arrives Friday. Can’t wait. Having fun caring for my loved one. Tags Alzheimer’s caregiver dementia father-daughter
Told Lynne I am always thankful she supported Keith when I was unable to be a loving father for him. Her steady gaze and the softness in her blue eyes told me she got it. Named people who still loved her. Listened to Linda Ronstadt Good hour. Tags: Alzheimer’s caregiver dementia father-daughter
It’s best if I visit Lynne alone. Best visits are cohesive units: neighbors, colleagues, grandsons, siblings, Dad & Carol. If I join them, we talk & Lynne gets restless, ignored. Plus Lynne gets an hour with friends plus Dad.
Keith said, “Dad, we’re with Lynne. Join us I said, “No. You and Lynne are so close. She told you to drop out of school, teach youth, bail you out trouble, propose to Sheri, help you daughters. It’s one level relationship with you and Sheri as brother/sister.” They had a 2-hour very warm visit and visited me afterwards.
Tags: Alzheimer’s caregiver dementia father-daughter
Keith will be a College Dean on July 31. It breaks his heart he can’t tell Mom and Lynne. Lynne was a hugely positive force in his life. I’ve told Lynne every day. She listens. I hope she understands. I’ll keep telling her. The photo was taken in February 2019.
Tags: Alzheimer’s caregiver dementia father-daughter
I ’ve said it doesn’t matter if Lynne knows me. She‘s happy to see me. Mom thought I was her brother, her husband, or me. Whomever. Today, Lynne looked up with a big grin and exclaimed, ”Dad.” It did make a difference Tags: Alzheimer’s caregiver dementia father-daughter
Tags: Alzheimer’s caregiver dementia father-daughter
Lynne worried about her memory 10 years ago in a journal entry in 2014. “I want to know that everything that needs to happen is already in process. I want a cease fire in my war with time. I want to move through my day with grace and ease.”
tags alzauthors caregiver dementia Alzheimer’s father-daughter
Mother’s Day. LynnR joined us. I shared photos of her sons. LynneR brought Starbuck’s Vanilla Latte. She laughed, pushed back, walked, spoke, smiled. I said, “I gotta go.” She got sad, but LynnR guided her on. It may be my last one.
Tags: Alzheimer’s caregiver dementia father-daughter
Lynne sleeps more. Jennifer’s visited at 7:15 pm. Lynne slept, stirred at times. Not eventful, Nice to be with her. Dad had the same experience, same armchair. Peaceful for Dad. I just looked at her.
Jen wrote: She was sound asleep and looked comfortable. I decided to just hang out. Whispered, “Hello, Lynney.” She stirred a little, raised eyebrows, eyes stayed closed. Rubbed her arms and cheeks gently. Read my phone, talked at times. She opened her eyes once and went back to sleep.
DAD wrote: Caregivers put her in the armchair and covered her with a blanket until they could get her to stay in her bed.
Tags: Alzheimer’s caregiver dementia father-daughter
Donna and Edith visited Lynne this morning. She enjoyed a little head and neck massage and a little walk. She definitely seemed “In the moment” a few times. She smiled and responded at a few points in the conversation. Donna reminded them of a weekend in June of 2017 in a gorgeous house on Whidbey Island. Lynne was happy that weekend although the signs of Alzheimer’s were definitely present We still had some great conversations on topic
Tags Alzheimer’s caregiver dementia father-daughter
Lynne focused her eyes on me, raised her eyebrows, smiled, reached out & hugged me. She erased my doubt & guilt. Opened her mouth for treats. Gripped my hand and I gripped back. “Want to arm wrestle?” Pressed back with big laugh.
Tags: Alzheimer’s caregiver dementia father-daughter
Today I’ll see Lynne after our cruise and her Covid quarantine. I’m anxious. Will she wonder where I’ve been? Forgive me? I also feel guilty. I liked the free time, not focusing on care each day. Am I still committed? Will I be?
The photo comes from the sidelines of one of the boys athletic events in 2015
Tags: Alzheimer’s caregiver dementia father-daughter Covid
Lynne’s superb replies to Jennifer’s care 4/18: Big huge Lynney smile; Laugh and HI!; SURE!; A chuckle; Jennifer said, “I love you Lynney, 3 times in a row. She replied clear as a bell, ‘I love you too, too, too.’ We both laughed”
Here are Jennifer’s details on what she did.
“She was walking when I arrived…laps around the entire floor. When I finally found her, she was looking straight ahead, with good posture and a comfortable gate. I asked if I could walk with her and she …
took my hand. We walked a little until she leaned forward to put hands on knees. Then I suggested we sit and visit and I could rub her hands if she’d like that…”SURE!”…we found a spot away from the loud TV.
She seemed calm but a little less engaged with me. She was engaged with her memories or hallucinations…talking a fair amount with other people that weren’t visible to me. A few things she said sounded like she was a little upset/frustrated…”Don’t do that”…then into Lynnese
But she didn’t look distressed in her face.
She would answer me if I asked about the hand and leg rubs. A smile here and there, a surprised look at the too cold lotion on her arm, a chuckle to my “I love you”.
She rested with her eyes closed. We had some music playing on my phone.
Eventually she stood up and I asked if she wanted to walk some more…we took a few laps, arm in arm. That is when Jennifer said “I love you” three times in a row.
Tags Alzheimer’s caregiver dementia father-daughter
Lynne’s visitors have noticed Lynne reaching for something on the floor or in the air at nothing. Alzheimer’s has limited her vision. This video is extremely helpful in explaining why and how we can help her. It’s from Teepa Snow on Vision Changes with Dementia
Vision Changes with Dementia https://youtu.be/ZqbxFD2-lsQ
Routine blood and urine tests found I had Stage 3 chronic kidney disease. I managed sugar, diet, blood pressure. I exercised daily. Today, doctor said, I’m overall doing well with improvement in kidney function” #Caregiver health is my highest priority
90% of an estimated 37 million people are unaware. If not treated damaged kidneys can’t be repaired. https://www.webmd.com
I’m lucky. I have support from my family, Lynne’s and my friends, and my lady-mate, Carol.
LynnR had a good Easter visit with Lynne. She ate all her food & enjoyed Raspberry dessert. We had quite a few laughs. They played disco on the TV. Her eyes got big when YMCA came on. She made a gesture with her hands as though she was remembering the moves. I got a huge laugh when I started dancing to STAYING ALIVE. We then chilled out on recliners. Had some nice conversations with her caregivers. They loved seeing Lynne recognize & hug Keith when he visited recently.
Tags: Alzheimer’s caregiver dementia father-daughter
Keith, Easter: she was excited to see us. Laughed, talked a lot. Engaged. Sat for 20 walked for 15 minutes. Cried when we had to go. Then OK walking away. Chows down double portion breakfast & in a really good mood for 2 hours.
Tags: Alzheimer’s caregiver dementia father-daughter
We caregivers must find ways to rest. This father-daughter rest was exemplary
Tags: Alzheimer’s caregiver dementia father-daughter
Photo by Simon, Lynne’s son
Lynne uplifts visitors. From Edith: “So happy I had a good visit, She really sustains & buoys you, looked directly at me with that steely eyed gaze thinking of communicating, heartened when humming, she really enjoyed my massage.”
Tags Alzheimer’s caregiver dementia father-daughter
Hurrah! A new caregiving highlight. A caregiver enlarged the hole in Lynne’s tippy cup. Barely better. I bought 4 brands. I sucked from each. Three worked better. I’m excited. Often I marvel at what gets me excited now. Alzheimer’s caregiver dementia father-daughter
LynnR and others are reporting Lynne sits up straight, walks & eating even 1-1/2 breakfast. She slept through the night. Fluidly sitting down & getting up from chairs without help. Even a little silly. Sleep my love.
#alzauthors Alzheimer’s caregiver dementia father-daughter
A caregiver succeeded with the tippy cup. She’ll work on it. I said, “I’ll buy what your want” Lynne slept in an recliner & did not respond to our care. A caregiver said, “She wants to sleep. She walked all day.” We left. We like to obey caregivers
Tags: caregiver father-daughter Alzheimer’s dementia sleep
I got a tippy cup for Lynne. Out of many I took the least babyish with no straw. The caregiver asked for two. Lynne would not drink from it. The caregiver said she wanted to sleep. I bit the nipple and sucked only a bit. Can she use it? Still working on it. I need advice. I never bought tippy cups for my daughter.
Tags Alzheimer’s caregiver dementia father-daughter
Lynne often says yes, but I wonder if it’s always wise. She dozed in and out of sleep head down and at times she bit on a chocolate treat. After the next, chocolate oozed onto her lips. I wiped it off, but it kept oozing. She wasn’t swallowing. Danger. Tags: Alzheimer’s caregiver dysphagia dementia dysphasgia
I didn’t visit Lynne. I thought I should. I go almost daily. I had to do taxes. Tired. Doubts I help much. I wish it was over. Others visiting. Carol was here. I needed a break. Afraid I’d feel guilty. I don’t. Except twinges of doubt and regret.
Tags Alzauthors Alzheimer’s caregiver dementia
Two days after my request for hospice care, Lynne was vibrant, aware, & excited in Jennifer’s visit. (see below). I await a hospice nurse’s evaluation. In the meantime, my responsibility for Lynne’s care once again enmeshes me in doubts.
Jennifer’s story: (minor edits) Good visit with Lynne on 3/23. Got lots of laughs and responses. I arrived a few minutes after 3pm.
When I got off the elevator Lynne was in the same place I saw her last time. Bent over, standing with hands on her knees. I took my coat off, set my things down, got chairs in place and then I put my hand on her back as I leaned in close: “Hi Lynney, it’s me Jenny…”
She stood up, laughing, eyes open with a big smile on her face, “Hi!”
“I’ve come to rub your hands again. What do you think about that?”
With a smile she said, “Yes!” As she started to walk in the direction of the chairs with my guidance.
I got her situated in the chair sat down in front of her and said hello again. She smiled with her face down, towards her lap. As I began to massage her hands, I reminded her of how cold the lotion was last week, that it made her jump with surprise…to which she lifted her head, “Yes,” and laughed.
I talked to her about memories, the kids sledding, Christoph crashing into the fence after a sledding race, and needing to go on a snowy adventure to the ER. I named the kids who were there: “Gianni was there, remember little tiny G?”
And she looked at me immediately and responded with a sentence in her own language, but I’m sure she was concurring that she did, in fact, remember little G! I talked about her cowboy boots I always loved that she’d wear with her skirts. We sat in peaceful silence, while I rubbed her hands and legs.
Then I told her I brought a book to show her, a book she had given my kids that she loved and had in her classroom…immediately she smiled, “Can I see?”…!!!!
Clear as day!!! I put the book in her lap she looked at the cover for about 15 seconds while I read the title and explained the story line. Even though she had closed her eyes, I opened it and turned the pages and told her the story, not word for word, but the high points. I got to the part where Sam realized where Louis lived — Louis’ drawing had a clue — he loved running after the soccer ball! His own version of “playing” soccer.
She opened her eyes again and looked at the page with the boy’s drawing. She used to love that book and the boy who was different from the other kids.
I put the book away and went back to massaging and just holding her hands while playing some music from a “70’s Road trip” play list. Stevie Nicks, Billy Joel, Carole King…she seemed to hear and enjoy the music.
I leaned in close, down low with my forehead to her forehead, so I could see her eyes and face…”I love you Lynney! I love you Lynney! I love you Lynney!” She chuckled, smiled, looked at me without raising her head and said it back, not clear as day, but she definitely said I love you, through her smile.
I didn’t have a comb, but I asked if I could use my fingers to comb her hair and massage her scalp.
“Mmmm, hmmm!” A pleased look on her face – She liked it.
I told her I had to go. She heard me and made a sound of consent. I told her I’d be back next week to massage her hands and she said, “Yes.” I hugged her and rubbed her back and told her I loved her again. She stayed in the chair, seemed peaceful from outward appearances. Of course, it’s hard to know for sure, but I hope she was.
Tuesday we presented to a Senior Center. Director: Content is so important for the work we do. Need it in Spanish, Vietnamese, Khmer. Carol: People want more information. Jim: Social workers already have clients. There is a 24/7 helpline. @alzassociation
Tags: caregiver dementia Alzheimer’s #endalz
Lynne resists food, ice cream, PB/chocolate. She walks, sits/falls on floor, stands up, pushes me away, hugs & cries. Sons, head nurse, staff, visitors confirm. Lynne didn’t want this life. Nurse to ask physician for hospice evaluation
alzauthors alzheimer’s caregiver dementia
A Washington Post Article by Christopher Rowland, @PostRowland, reported senior care costs represent “the single largest financial risk” facing boomers and their families in the US. And if not addressed it will become a humanitarian crisis. Crisis. And if not addressed it will a humanitarian crisis.
Lynne’s twins embraced their mother earlier this year. The article about the Boomers unprepared for the costs of long health care is a threat to their children who may need to come to their aid. Fortunately Lynne’s finances are projected to cover her costs.
L walked slowly, head down, rigid. A resident put her arms on me & whispered, “She been aggressive today. She’s had a hard day. Some residents have pushed back on her. I just wanted you to know.” I’m thankful residents care for each other. & me. I often see residents care for each other on Lynne’s floor. I wonder if there are ways caregivers could give residents more opportunity to help each other via programs.
#alzauthors #alzheimers #caregiver
Friends of Lynne and mine have called to ask how Lynne was doing in Alzheimer’s final stage. Today I realized they’re more interested in how I’m doing – Support groups? Other activities? Glad I had found Carol. With friends like mine I’m doing fine.
#alzauthors #alzheimers #caregiver
Long-Term Care medical expenses for a chronically ill individual as prescribed by a physician are tax deductible. Lynne paid no taxes, again – a tragic, but appreciated benefit. I had to explain it to Lynne’s tax preparer
#alzauthors #alzheimers #caregiver #endalz #dementia
Residents sat in front of a TV screen when I walked onto Lynne’s floor recently. One of them raised her hand to point at me and shouted. “We like him. He talks to us here.” And they want to help me, or talk with Lynne. They are a blessing to us.
#alzauthors #alzheimers #caregiver #endalz #dementia
We tried using a walker. Dad put her in his and guided her. Dad walking behind made good progress. It was easier to keep her from sitting on the floor. Sunday was much harder because her body stiffly resisted the walker.
#alzauthors #alzheimers #caregiver #endalz #dementia
Alz.org reported people with dementia require 151 hours of caregiving per month at the outset, increasing to 283 hours at the end. No wonder every spark of admiration from you lights a flame of inspiration in me
#alzauthors #alzheimers #caregiver #endalz #dementia
I needed quotes to inspire me after yesterday. It took me a while to find one.
You can’t use up creativity. M. Angelou. Yea, but I misplaced it.
Find out who you are and do it on purpose. D. Pardon. I didn’t like who I was yesterday.
To be contented – that’s for cows. D. Vreeland. I liked their milk.
Each day, start with what you most want to avoid. Me. Today, it’s correcting yesterday’s work.
Live the life you imagined–Thoreau. I didn’t imagine this life.
White hot and passionate is the only thing to be. R. Dahl. I was passionate about naps.
We have a strategic plan. It’s called doing things. H. Kelleher I did them wrong.
Make it happen. M. Jordan. Make what happen?
Don’t think about your errors or failures; otherwise, you’ll never do a thing. B Murray. I made more errors.
If you are lucky enough to find love, remember it is there and don’t throw it away. S. Hawking OK, I can do that again.
#alzauthors #alzheimers #caregiver #endalz #dementia
Painting by Carol Hosler
Almost daily, we sit with L and talk about friends. Soon, L opens her mouth to eat and we ask if she’d like a treat. Then we ask to brush her hair, massage her, apply moisturizing cream. She always says yes. I believe she wants Dad to come back.
When I say goodbye, she says OK. Her short-term memory won’t recall this visit. Even so, I believe she’ll feel better for a while. I believe she knows Dad will be back almost every day. I believe, and fervently hope, the repetition of daily visits strengthens synapses in her brain to recall me, feel my love, sense I’m close, and keep her safe. My synapses enrapture and enliven my love for her regardless of her everchanging cognitive capacity. #alzauthors #alzheimers #caregiver #endalz #dementia
Laura Davis wrote THE BURNING LIGHT OF TWO STARS to share how she reconciled with her mother who betrayed her when she was 27. As Davis cared for her 80-year-old-mother with Alzheimer’s they shared unconditional love. The caregiving is exquisitely revealed.
A memoir of the author’s journey to care for her mother, who had betrayed her decades earlier, led them both to reconciliation and unconditional love.
#alzauthors #alzheimers #caregiver #endalz #dementia
Caroline was Lynne’s neighbor across street. Both teachers. Loved talking about work, sons, and anything education. She was such a fun neighbor and friend. I miss her as a neighbor, fellow teacher and friend. We share names & photos with Lynne.
#alzauthors #alzheimers #caregiver
New scratch on L’s nose is from a fall with a friend. She had fallen 2x the day we visited. She’s a walker. My mom, also a walker, cracked her pelvis on her last fall. Unrepairable. Mom laid in bed for 6 more months. We live with insoluble fear. While we sat with her she often stood to walk but gave up because Carol and I sat too close to her. She sat back causally. An anguished aide keeps considering ideas for her as a walker: A helmet? A safety suit? #alzauthors #alzheimers #caregiver #dementia
I had warned Lynne I’d be gone for my surgery. She heard me. Yesterday I rolled up my pant leg to show her my incision and steri-strips. Her head slumped to look, mouth dropped open, & eyes went wide. She reached out to Carol. Did she feel my pain? Did she want to care for me? How much does she understand when I talk as if she’s an adult fully hearing and understanding to some degree what I am saying? #alzauthors #alzheimers #caregiver #endalz #dementia
My push-me voice fought my surgery. YOU LEFT HER. I told her. WHY NOW? Got to heal it. WAIT TIL SHE’S GONE Waited years. SURGERY OVER. GO No, Health first PUSH THRU IT TODAY Groggy, pain, unstable. SHE’S ALONE. Others visit. VISIT TOO SHORT. Give me time.
#alzauthors #alzheimers #caregiver #endalz #dementia
Your most important relationship is with your inner voice. The Guardian
From Allison Savage: We were friends in high school & FB allowed us to reconnect. Her laugh remains with me all these years & her kindness was memorable as a new student to 10th grade. I’m sending you love & peace. Lynne smiled at her name.
#alzauthors #alzheimers #caregiver.
Nancy & Lynne’s BFF. Nancy is an extraordinary caregiver. The video highlights Nancy’s creative, contagious spontaneity uses Lynne’s hand on Nancy’s knee & Lynne’s tattoo of a frog to generate laughter for Lynne, Carol & me. #alzauthors #alzheimers #caregiver #endalz
I was on a team of Alzheimer’s caregivers which met with legislative aides to advocate for expanding resources and numbers of guardians. Each team member had a personal story. And 1 aide worries about his mother with dementia. She lives alone in Vietnam #alzauthors#caregiver
Lynne’s POLST (Portable Order for life sustaining treatment) is a physician order that no resuscitation be attempted if her breathing and heart have stopped. Every year we confirm the order is on file with her care facility. One year it was not.
Lynne pulled the handle to open her dresser drawer to rummage in it. She placed her hands on top of the drawer to close it.. I had seen her crunch her fingers and cry out in pain. I grabbed it. Being there for her rejuvenates caregiving and soothes regrets. #alzauthors#caregiver
Lynne brought love when she moved into assisted living. Carol pointed at it, “Lynne it says love.” Lynne replied in a long sentence as she gazed at it. Carol heard two words: family and Lansing, where we lived for 3 years. Lynne still brings the love
Melancholy swiftly swarms over me when I recall images of my vibrant Lynne in contrast to her stumbling shuffle today. Merry-making quickly rushes inside me when she recognizes me for 4th time that day, smiles and reaches out to hug me for the 4th time. tags: alzauthors caregiver dementia
My kids ask if marijuana might calm Lynne. 1 study of CBD (Nabilone) reduced agitation in 38 patients. A larger study ends in 2025. 13 states approve medical marijuana for Alzheimer’s (not Washington). Alz.org needs more research. Should we try CBD?#alzauthors#caregiver#endalz
Lynne walks briefly, bends over or sits on the floor. I set my elbow on her hip & squeezed her arm & hand to steer her. She accepted. She tried to sit & I pushed up her butt with my knee. Being with her now soothes regrets when I might have been with her. #alzauthors#caregiver
Nancy loved Lynne’s painting: “Faith is believing that one of two things will happen,” she said: “that there will be something solid for you to stand on, or that you will be taught to fly. They dared to believe it and lived it.” It comes from a poem by Patrick Overton, in The Leaning Tree. The full text is: “When you walk to the edge of all the light you have and take that first step into the darkness of the unknown, you must believe that one of two things will happen. There will be something solid for you to stand upon or you will be taught to fly.” I love Nancy now has it to share”
#alzauthors#alzheimers#caregiver
We quit playing music on a cellphone in a fanny pack on Lynne. She takes it off. It goes dead. Staff on multiple shifts & forget to put it on her. Some songs bother her. Other residents take her cellphone. I stress about it. Any ideas for us? #alzauthors#alzheimers#caregiver#endalz
Let’s dance. Walked in her apartment playing a song with repeated refrains: Carpenter’s: Rainy days and Mondays … Held hands, swayed & I sang the first refrain. She laughed, moved with the refrain, and sang the refrain. #alzauthors#alzheimers#caregiver
Monday: “Hi Lynne, it’s Carol” Big hug. I named Lynne’s boys in two photographs. Lynne focused on each name. She reached out to Carol, smiled, & said, “Boys” Carol said, ”Yes, I have two boys. You have 3 boys” Lynne said, “Yes” Lynne rarely speaks words now. #alzauthors#caregiver
Head down. Bends over every few steps. Plods. Stops. Speaks with an unintelligible purpose. Hugs me. Can’t see chair in front of her. My emotions surge with respect, courage, sorrow, doubt, strength, and deeper love. She gives me her all every day. #alzauthors#alzheimers#caregiver
Photo by Imman Wegmann, Unsplash
A resident next to Lynne gently affirmed her in slowly stated sentences of palaver ending with words such as good, you can do it, help. Lynne listened, head down, legs crossed, leaning into her voice & nodding OK. I listened, grateful, surprised
#alzauthors#alzheimers#caregiver
We moved my Mom from Adult Family Housing to a memory care unit. She was a walker and needed more space. At our first visit, she introduced us to her new boyfriend. They walked everywhere together. Traits in Lynne: Alzheimer’s, walker, friendly, healthy body. #alzauthors#caregiver
Lynne is guided hand in hand by her roommate, a sweetie my age. She is more verbal and mobile. She asks me to help so the three of us walk together. She introduces me as her boyfriend and Lynne as my daughter. It’s working out well for all of us. #alzauthors#alzheimers#caregiver
Lost Lynne’s cellphone for 5 days. Longest time. Depressed she had no music. Asked to charge it overnight in MedTech office. She gets it at 2 PM, the shift change, until bedtime. “OK. We charge hearing aids overnight.” Why did it take me so long? #alzauthors#alzheimers#caregiver
Memories of walks & dances. Lynne scared me on a vigorous walk with Tucker down to the shore of Lake Washington. “Lynne, it’s too much. I can’t make it back up.” She walked back at my pace. I treasure our New Year’s Eve dance at Aegis.
#alzauthors#alzheimers#caregiver#endalz
Keith found Lynne on her hands & knees and then found out what she needed and he could give: “I went over and gabbed Lynne by the front arms and pulled her into a hug. I don’t think I have ever picked her up that easily, “I nudged her into a chair. She nodded off to her right side, eyes closed. I had just fought through 2.5 hours of Seattle traffic from Bellingham. “Oh no you don’t mein sister.” I put my head down and thought, I need you need to try to be with me now.” Pretty selfish actually, but I got over myself. I then slowly started to rub her right calf. She leans over when she walks and grabs her legs often. She does what I do when I can’t stretch every day, She rubs her back legs.
“Her calf muscle was tight as a drum. I slowly began to work it. Then went up to her thigh. She said, “Oh Yeah,” and then did some Lynne speak as we call it. She rattled off a litany of ‘Lynnisms’ and then crossed her leg.
“I did the other calf. Then the thighs. Slowly, conversing in the way she converses, which is a wonderful, real, foreign language, but makes a ton of sense when you are with her. She was sighing, and in heaven. When has someone touched me like this? And I thought, heck, this is the way we can get time together. I kept massaging and rubbing.
“I then tried the feet, she flinched and said “No, No, No.” I said gently? She nodded, and flipped her crossed legs. I tried that for a while, too much. Went back up to crossed legs and calves. I rubbed the top of her right calf, tight as a drum. Then her thigh. She said, ‘Oh Yeah.’ I did the other leg. We talked & walked, a magical 2-hours. She knew I was there, with her. Her little brother, there, with her.”
“And in the background the whole time was a Martin Luther King Video (today was MLK day), speaking to how he made the world a better place. There were women in the background saying “Yeah, I remember that day!” Justice to all this fine day, justice to all who are marginalized, and justice to the fine ladies of West Seattle Quail Park! They are amazing, and so are all those who fight for justice, as I know my sister was doing in her final days of teaching special ed to those who needed it most. Love to my sister and my amazing dad who showed up with Reese’s peanut butter cups right when she stood up and walked ten feet! We went all the way down to the end of the hallway and all the way back. Then it was time for lunch and awkward goodbyes, as always, the awkward goodbye.
See you soon my sister, love you always.” Keith
Friends Donna and Patricia visited Lynne at Quail Park Doonna said: “Patti and I had a good visit with Lynne. She had some big smiles, several chuckles and many hugs!” Looks like they had a good walk also #alzauthors#caregiver#endalz
At 18 Lynne wanted to be the best elementary teacher in the school. At 44, she read in The Alchemist “People learn, early in their lives, what is their reason for being. Maybe that’s why they give up on it so early.” She quit her career to teach. She found her treasure.
At 41, Paulo Coelho: “I wanted to write my quest to find my treasure.” It’s been translated into more than 80 languages. #alzauthors#caregiver#endalz
Lynne had a ridiculously loud whistle, halting sons, students, neighbors, siblings, parents and dogs into attention with intention to be led. I was interested, curious, jealous, eager and expecting fun, duties, joining — never afraid. I miss it. #alzauthors#alzheimers#caregiver
Found Lynne on her knees, helpless. “Want to get up and walk” Yes
Walked. I passed gas, lots of loud gas. “Sorry, I should have left those at the apartment.” She laughed
Danced to Allison Krause’s – GOODBYE AND SO LONG TO YOU. We sang
“Gotta go. OK?” Yes
alzauthors#alzheimers#caregiver#endalz
Lynne’s 1st journal entry in 2014: “I want to know that everything that needs to happen is already in process. I want a cease fire in my war with time. I want to move through my day with grace and ease.” Her lonely fear of Alzheimer’s haunts me. How could we inspired her to share it with us from January 2014 to diagnosis of MCI in August 2016? I believe we could have given her more support.
#alzauthors#alzheimers#caregiver
Inside Alzheimer’s (Rev Ed.) author Nancy Pearce. Excellent book on how to learn to visit people with dementia. She provides many practical ways to overcome fears and learn skills to “focus on the now” to experience the joys of visiting #alzauthors#alzheimers#caregiver#endalz
Left saying, Gotta go. “No,” so I fed her, then said, Gotta go. “OK.” I stay if she asks. When she sees me, she greets me. Walking alone, she forgets me. I’ll leave, hiding from her. Others say, always say goodbye. Sometimes I think it’s better to leave when she’s already forgotten me. Still feel guilty. I believe I gave her my best. #alzauthors#alzheimers#caregiver
#alzauthors#alzheimers#caregiver
Nancy and LynnrR’s visit 1/2/23: Lynne was in a happy place and did lots of giggles and smiles. We ran into her twins when we visited. Fun to catch up with these awesome dudes and see sweet moments of connection. They are twin towers of love
In August Lynne said YES after the 3rd time I asked Lynne if she wanted to grant her twins power of attorney to backup Dad. Lynne convinced the Notary she understood. The sensitive, caring men visited yesterday, confirming again, she made a good decision. They went one better by visiting me afterward to give me a gift of the top-of-the-line desk chair similar to the ones their dad got for them. They fit them to their frames. The knew I needed to replace my video gaming chair.
#alzauthors#alzheimers#caregiver#endalz
Friend Kate treasures 10 years of monthly Sunday suppers with 4 families & kids. “We timed it so Lynne hosted in December with her famous raclette. She was an amazing hostess in a full house of Christmas decorations. With the four families, each family hosted 3x/year and the rule was no one could bring anything so it was on the host family to serve 8 adults and 10 kids. She recalled it. Let’s celebrate her gifts #alzauthors#caregiver#endalz
Lynne adapts to dementia by reducing lived space, like her calm peaceful quiet 2-BR apt. She walked in 4 rooms. “Hi, sit with me on the bed.” Opened her mouth to ask for a choc mint. Alexa played Lyle Lovett. She sang, danced, smiled, & slowly revived.
Smaller Space Longer Time worked. This a good meta-analysis of the importance of giving her smaller, peaceful, quiet lived space when possible: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5795848/
#alzauthors#caregiver#endalz
Friend Nancy: She was a “fighter for justice and fairness, who really educated us in the department, other interviewers, and decision makers at the company around how they needed to think more broadly and not be so cookie cutter in the way we analyzed talent. For example, in evaluating a female candidate and male interviewers were saying, “Oh, her communication style was very circular.” And Lynne was all over that. “Wow, that’s a dog whistle. You’re basically describing feminine versus masculine.”
Boys, tell us why you love MOM: her smile, whistler, energy, love; healing injuries, hurts, regrets, misdeeds, pride, mistakes, disharmony; meeting your friends, her friends, neighbors; trips: ski, beaches, Germany, rivers, hikes, theme parks, mountains; Christmas, birthdays, parties, weddings; favorite gifts: games, clothes, computers, toys; coaching you if naughty, hurt, insensitive, proud, rude, helpful, loving, angry, resentful, unforgiving; found summer jobs, counselor; trips to the beach, mountains, ski slopes, water slides, sports, parks, mountain climbs; teaching you computer skills, jokes, herbal gardening. #alzauthors#caregiver#endalz #alzheimers
Lynne was so groggy on Christmas, I escaped after 15 minutes to join her boys and her brother’s family for dinners. In our loving joviality each of us kept silent thru winces of grief from missing her. O joy for all of us to to see Lynne’s smile in Nancy’s Christmas photo. #alzheimers#alzauthors#caregiver#endalz
Katie, Lynne’s 6th grade teacher whom Lynne idolized, wrote: Lynne emailed me and asked if she could call me about her decision to be a Special Education teacher. When I heard her voice I was transported into the past and the present and the future at the same time. She had re-read Paulo Coelho’s The Alchemist and it compelled her to examine her life and change her career to become an educator. Teaching is a calling and it has become a very challenging career over the last 40 years, but how fortunate for all of Lynne’s students that she chose that path. I was very excited to hear about her decision and wanted to encourage her and I was just over the moon to hear her voice and listen to her talk about realizing her dream.
#alheimers#caregiver#alzauthors#teacher#specialeducation
While I was with Carol, friends Nancy & Rauch cuddled with sleepy Lynne in her single bed. Recalled 20 friends in a slumber party in a massive snowstorm. She laughed a lot & ate a bounty of meals & snacks. “2-hour sweet visit.” Soul-stirring blessing for Dad.
#alzheimers #dementia #alzheimersawareness #caregiver #seniorcare #dementiacare #caregiving #alzauthors#alzheimers#caregiver
I ached for Lynne alone, aimless, abandoned as Carol and I dressed in our bedroom in the historic Silver Queen Hotel in Virginia City Nevada before Lacy J Dalton’s Comstock Christmas Concert at the Red Dog saloon, my gift of Christmas bliss for Carol.
#alzauthors#endAlz#caregiver
New haircut, finally. Designed to easily brush, shampoo, and look good all day. Caregivers, concierge, co-residents, barber, are all happy. She can walk and eat without hair in her eyes. She seems to walk more upright now. Halleluiah!
Lynne hugged me. She usually hugs me tight & pushes away within a minute. This was a gentle hug, resting in my arms, standing straight. 2 minutes, 3. Whispering in my ear. 5. The cleaning lady had to push her cart around us. 7, 9, finally 11. A gift.
#alzauthors#endAlz#caregiver. Tags: Alzheimer’s caregiving Dads
Lynne’s boys credit her for their honesty and love for each other. They brought flowers & a card and cared for her on a hard birthday. Few 25-year-old men care so deeply for their mother with Alzheimer’s. They graced her with the love she taught them.
#alzauthors#endAlz#caregiver Tags: alzheimer’s caregiving
Lynne’s brother and Dad remembered when Lynne danced to Dance Like an Egyptian. Keith’s wife Sheri played the music and Keith and Dad danced while Lynne laughed.
#alzauthors#endAlz#caregiver
Lynne walks head down now. Hair covered up her eyes. It frustrated her, us. She took off headbands. Too much hair for scrunchies. Booked a haircut. Thankfully a caregiver tied it in a wrap. Happy now as she waits to use her straw for a new drink. Dad’s handicapped caring for his motherless child.
#alzauthors#endAlz#caregiver Tags: Alzheimer’s caregiving haircare dementia
Lynne forgets I’m holding her hand. I drop it at a bench she used to walk around. She pauses, turns left, walks to the wall, pauses, & turns left. She’s happy to see me and hugs me tight with “I love you”s. We start again. They feel like happier times. #alzauthors#endAlz#caregiver
Lynne leaned on a railing, unresponsive. Caregiver, folding napkins, “She was walking at 2 PM.” Sat us down with juice & straw. Lynne sucked it up in 1 gulp, 2nd one in 2 gulps. Lynne alert, “Don’t go.” It took both of us. Disappointed in both of us. #alzauthors#endAlz#caregiver# Tags: Alzheimer’s caregiving
Seeing Lynne in her final stage is painful at times. What helps is other caregivers caring for me. Patricia, a classmate and educator, posted this statement to me, “You raised a spectacular woman. Lynne was a fantastic educator and all-around human.” #alzauthors#endAlz#caregiver
Lynne studied my wedding photo the 29th. She had adored it countless times. I said, “I miss mom.” She teared up, sorrowful, “I miss Mom.’” We repeated it. I said, “She loved you so much.” She heard it. Alzheimer’s caregiving includes sharing sorrow.
Lynne’s mom and I married 11/29/63. After Lynne’s diagnosis they loved, disagreed, & agreed daily. Mom’s hospice was moved to Lynne’s facility to be with Lynne. Seeing us together, Mom said, “I am seeing a miracle” Lynne still says, “I miss my mom.” #alzauthors#endAlz#caregiver
Lynne loved visiting my mom for hours and hours in Mom’s early Alzheimer’s. Lynne set a goal to be as happy as Mom for my sake. Mom was retired. Lynne lost her sons’ futures, friends and a career. Happy led to failure. I regret not helping her understand that #alzauthors#endAlz
Mom lived alone before cell phones. My nephews, 8 & 10, loved to sleep over. She left them at a movie and forgot them. They walked 2-3 miles to knock on her door. She said, “How nice of you to surprise your grandma” My brother never alerted our family. I think he thought it was normal senility. We had the same thought when she was visiting us: “Probably senility. #alzauthors#endAlz
Part 1 of at two part interview on the Rodgerthat.show about my caregiving for Lynne is on the Podcast at the URL below. I’d welcome any feedback. #endalz#endalz
https://www.rodgerthat.show/upcoming-epis/ep-156-younger-onset-alzheimers-part-1-james-russell
22 I believe Lynne always communicates when upset. She shook her fist at a chair seat pointed to a dining room wall. I turned it around and put it at a table. Lynne nodded her approval with nicer phrases. I listen, yet understand only a fraction of what upsets her. #endalz#alzauthors
Nancy, Lynne’s BFF, left ten minutes before I visited. “Did you have a good visit with Nancy?” Ears heard. Mouth still. Eyes staring, shrouded by a search of her memory. Need more time? Was it gone? Too faint to recall? Ask her again? Use a prompt? Nothing. #alzauthors#endAlz
Daily a silver haired resident sat by the elevators, alone, smiling, silent. She had charmed Lynne and me. One day I said, “Hello Beautiful” Silent wonder. Next day “Hello Beautiful” Silence. Third day “Hello beautiful” She smiled. “You’re not so bad yourself” #alzauthors#endAlz
Yesterday I loved Lynne as she pondered mysteries. I loved her when I recalled who she was. I grieved about her life today compared to her friends’ lives. I felt a bottomless pit below me. I shifted my love back to her and could not have loved her more. #alzauthorsg#endAlz
After diagnosis Lynne said goodbye to her special ed students and said, Dad, I’m going to be happy. Grammy Helen was happy. She vowed to be the 1st survivor. 6-months later she erupted in fear, I don’t want to f…g die She needed counseling after diagnosis. #alzauthors#endAlz. Tags: Alzheimer’s Dementia Counseling caregivingcare
#Alzheimers #Alzwa #alzauthors #alzheimersSpeaks #caregiving #endalz
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.
#Alzheimers #Alzwa #alzauthors #alzheimersSpeaks #caregiving #endalz Tags: Activities, caregivers, anxiety, fear, isolation, loneliness, consoling, confusion, video chats, dementia, Alzheimer’s,
Friends arrived to visit Lynne and share on with each other just a week after her fall and three seizures. I was pretty depressed by the three seizures and the way Lynne with the bruises after her fall on her face. A week later her friends It’s a classic lesson about the value of friends who can give caregiving because everybody has a different relationship with her. and she recognizes the differences. We are blessed with this caregiving support. It is a thrilling feeling to see how much they transformed Lynne into spontaneous activity with friends who for decades. I have printed much of the dialogue her friends shared with each other and our family.
Nancy: Lynne was all peaches and cream today for our visit. Great appetite enjoyed her lunch and her lemon cake treat and coffee. Then we walked up the hill to the Farmer’s Market, she ogled all the doggies. She loved being in the fresh air and sunshine. She noticed things and pointed them out. Read some signs out loud. Good verbalizing. She ate a whole huge juicy peach and enjoyed it tremendously. Dance party on the way home. She was laughing loud and having a great time as we came home.
She was ready for some alone time by then. Started to have a bit of emotional cycling just at the very end. We left her with a kind care giver. The floor was much better staffed today, looks like they made some hires.
Edith: It was a really good visit. I think Quail Park is a big step up from Aegis! Much calmer, lovely neighborhood and a chill vibe all around. We spent some time on the terrace which is also very lovely. I’m so happy and relieved that all of you got her there.
Keith (Lynne’s brother). Sunglasses is a good idea when going out. She’s one tough Cookie.
Hilpert She loved wearing them inside too! I think they turn the visual volume down a bit. Plus she looks cool.
Sandy Those glasses really are cool. She looks wonderful in them. Very energetic and centered.
Nancy & friend LynnR and I agree with Edith, while Aegis was great for the first leg of the journey, QP is a superior solution for Lynne at this stage. She tells us that she likes it there. Her behavior says she’s less triggered and feels good. Her meds seem to be working well too. We can all sense the improvement in her state of mind and nervous system. She was really happy to see us today too, and greeted us with that joyous smile of delight and surprise.
Keith Thanks Nancy, what a great update! I had a great visit with her Thursday. Similar observations.
We had two pleasant visits with Lynne in her new memory care floor without the anxiety she had felt earlier in the week. Thursday she was joyous as she recognized and hugged each son. Simon and Christoph spoon fed her lunch. At one point she saw me at a separate table and smiled, “Oh, my Dad is here too.” On the way down in the elevator, Christoph said, “That’s the best I’ve seen her in quite a while. Friday I joined her to watch a game show on TV. I said, “By the way, I have some brownies for you. She surged forward with a nod of her and said, “Get to it, huh!” We laughed. We walked to the aquarium room with deep armchairs where we sat quietly. I watched her face go through one emotion after another: a light smile, a frown, an emphatic gesture to finish an unrecognizable statement, concentration as she scanned the area, and softening her muscles when she laid eyes on me. I remember loving to watch her emotions surfacing and vanishing across her face as an infant. She looked alert, loved, and relaxed. I wondered if she enjoyed the companionship as much as I did. I stood up. “I gotta go,” and kissed her on her head. She tipped her head. “OK.”
Saturday the Head Nurse woke me up at 7:45 am. They found Lynne lying on the floor in her room with a golf ball sized bump on her forehead, blood from a cut on the skin of her nose, and a cracked cartilage in her nose. Lynne probably had an epileptic seizure early that morning. She had probably laid there for half-hour before staff found her and put her in bed. The head nurse and the doctors believed she could not break her fall with her hands because she had an epileptic seizure. Ambulance drivers took her to Virginia Mason Hospital, during which time they witnessed a second seizure. As Carol and I stood by her in the emergency room that afternoon, she was thrashing in bed to get our the restraining cords on her wrists. Suddenly she yelled in a third seizure which lasted a few minutes while 3 nurses attended to her. Last year Lynne had seizures in June and August, after which doctors prescribed a minimum of Keppra. She had no recurrence for over a year, so we thought it was controlled.
I have read that approximately 10-22% of patients with Alzheimer’s have at least one seizure. Seizures are more likely to occur with early-onset Alzheimer’s in the later stages. Carol and I saw her Sunday when she was still thrashing against restraints to keep her in bed. We will meet with her neurologist and Lynne’s Head Nurse on Tuesday to consider new prescriptions and their likely side effects.
Monday The VM doctor called me to say Lynne is resting comfortably. She’s pleasantly chatty. Keppra, Lynne’s epilepsy medication to prevent seizures, was seriously below expected levels in her blood stream based on her present dosage. Apparently she had not swallowed the prescribed dosage for unknown reasons. I’ll talk to Quail Park about why. The VM doctor and neurologist have prescribed the next level of Keppra which they believe will avoid future seizures. They will probably discharge her Monday afternoon after arranging delivery details to return her to QP.
We must wait to see how we might be able to care for her in a comfortable, meaningful life without seizures and unpleasant side effects. I am much more encouraged than I was late Sunday afternoon that we can maintain Lynne’s reasonable quality of life for the near future.
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.’”
We have agreed to move Lynne to a care facility dedicated to residents with Alzheimer’s and other dementias because we believe it would be more comforting for Lynne. We greatly appreciate the current care she is receiving and we know staff will miss her and she and we will miss them. We have visited three facilities, two of which rejected her, and one which has accepted her for care.
Nancy Hilpert, a BFF since the 1980s, and another of Lynne’s friends have been frequent visitors with an aggressive style of care Lynne has enjoyed. Her story below gives you an excellent view of similar caregiving I have been involved with for months. It’s a compelling, loving story, and I urge you to read it for inspiration it offers for any caregivers for persons with dementia.
The Buddy System
Nancy Hilpert
A Sunday at Lynne’s assisted living begins with Linda and I meeting at the lobby around 11:45, in time to feed Lynne her lunch. We talk about taking her to the north end of the Lake Washington Arboretum today, there is a nice shady path that leads out to the water, and I’m hoping she’ll be able to make it all the way to see the blue tones of the lake, white capped by the breeze. We enter the elevator and punch in the code to access the memory care floor. When the doors open, Lynne is straight in view, she’s hunching over, as if in pain, a posture we see her take frequently. We’re not sure what its about: back pain, catching her breath, restabilizing her emotions? Maybe it’s a bit of all. As she looks up and sees us, her face becomes a screen displaying a range of emotions rapidly arising and passing: surprise, joy, fear, shame, anger, disgust, sadness, desolation. She emits a sound that seems to be both a cry and a laugh, simultaneously arising. Once that would have been a moment of philosophical recognition, about the ever-changing nature of our emotions, how we are just cell sacs, walking electro-chemical reactions, how it’s a miracle that we can communicate, commune at all. But the time for those conversations has passed: now we’re just living in the shit of it together, seeing how we eat what we’re dished out. Somedays we take that knowing with the lightness that frees us from the mental burden; somedays, like today for Lynne, it’s a heavy weight to carry, and it drags us down to our lowest. She is cycling, and the emotions are strong, she’s pushing us away, and telling us ‘go away’ ‘go home’ ‘not today’ in a tone that tells us she’s had it, she’s already blown her top and there is still more to come. Linda and I both look at each other and share an empathetic shrug–it’s just a sucky day and we will do our best to help our friend through. We could just turn around and say it’s a bad time to visit, we’ll come another time. We could decide to just let the caregivers deal with the challenge of settling and feeding her. We could just hang back and wait, talking amongst ourselves. But we soldier on, encouraged by the company and commitment of the other.
I head down the hallway to check on the status of lunch and see that everyone is still milling around the cafeteria waiting for hot food cart from the cafeteria, the MedTechs hanging around the counter, getting the more docile residents (of which almost all of them qualify, the average age on this floor looks to be 80+ if you take our young friend out of the calculation). Their bodies just don’t have the strength, balance and energy that Lynne’s still does, even as much as she has declined. She is tall and strong, and today, Linda and I feel just how much the weight gain has helped–she pushing us and pulling our arms, twisting our bodies, almost pulling Linda’s shirt off at one point (I told her to make sure she wears a good bra on Sundays!), and at one point had me in an arm lock so I couldn’t move. She comes charging around the corner and whips through the small aisle between the dining tables, grabbing things, touching people, at one point making an aggressive gesture toward a resident who is wheelchair bound. The floor nurse sees this, and I make eye contact with her and nod, gesturing to her that we’ll pull Lynne away from the residents, and back into the hall. A few moments later she’s there with us, chasing an avoidant Lynne down the hall w/ her syringe loaded with some kind of psychotropic, something to calm her down, she says. The floor nurse is our size, and we watch her tiny form try to subdue Lynne long enough to get the tube in her mouth. Lynne is pulling away hard, shouting: No, no, no, never again. I won’t. Stop. And she’s cry-shouting, her face melting into tears and redness. Linda and I are worried that Lynne is going to take this resistance too far and I say in an assertive tone: “Lynne, she’s trying to help you. Please cooperate.” Linda is muttering under her breath: “She’s gonna kicked out. Or drugged.” And we both commiserate, this is exactly the kind of behavior that we’ve read about, and it gets people kicked out of care homes and blackballed as Aggressive and Uncontrollable. Just then she aggresses toward The floor nurse, and we see her hands grab at her throat, and we both move instinctively to grab her arms and pull her away; we can’t help but chastise Lynne with a warning tone in our voice. But The nurse is as tough and gentle as her job demands, and she is neither frightened or deterred by Lynne’s aggression, as we turn back toward the cafeteria, I apologize on Lynne’s behalf and ask her if she managed it. She says, no worries and confirms with a sly smile, she’ll feel better soon. I thank her and count this blessing: an angel and a true professional in our midst.
We make it our goal to keep Lynne away from the other residents until the meds kick in or lunch arrives, but she doesn’t want us near her either, so we just follow along behind her and use our bodies like curbs to get her to change course. We take her outside on the deck and get her to walk out there. She’s cursing and I join in Fuck this, and fuck that too! I make a joke about how nice it is to have her saying my favorite word unfiltered. We have a little conversation with her about what is going on and how confusing it must be and that it’s OK to have shitty days–we all have them–and remind her she doesn’t need to fake it around us. Out there in the relative silence we can suddenly hear the music coming from Lynne’s fanny pack — it’s Olivia Newton John singing something from the movie Grease. Fuck, Lynne, no wonder you’re cranky, If I had to listen to ONJ’s whiny falsetto before lunch I’d be angry too, and this makes Linda laugh and then Lynne laughs too. She’s laughing and sobbing at the same time and it occurs to my inner stoic that’s pretty much life: I was sad, I cried and then I laughed about the futility of it all and became happy, the end.
Back inside we can hear the tinkle of metal on porcelain signaling that lunch service has begun. We walk with her around the square hall to the main dining/living room and I arrange three chairs around a table in the side parlor, where no one else eats. Then I speak with one of the staff, to let them know where to bring Lynne’s food, which is a special plate, today puréed pinto bean patties and pureed sweet corn. We get her into the quieter room away from the others and corner her into the center chair, but at the last moment she shifts her weight and moves to the next door chair. We go with it, and shifting direction, I grab a spoon and Linda holds the plate nearby, while I position my body right in front of Lynne, so as to block her movement. I offer her spoonfulls, which she accepts distractedly. She’s fidgety and keeps trying to get up, and so we let her stand and then maneuver her into the center chair again. More food shoveled in. She’s now grabbing at it with her hands, and Linda holds the plate close to let her take a fist full, which she shoves into her mouth, chunks falling off onto us and her clothes. Linda disappears for a moment while I hold the cup of water up for Lynne to drink, then she’s back with a stack of paper towels. By the end of the meal, the towels have been fully deployed, her pants and top look terrible, full of brown and yellow specs of mush, but we don’t care. Lynne has cleaned her plate and we feel triumphant! She’s still cycling, but not as fast and furiously, and she’s very verbal–lots of talking in angry tones about ‘what she did’ and ‘they’ and “he didn’t tell me” and other crimes against her agency. We feel for her and we know it’s a risk in her current state to try anything more, but we also know that the antidote is getting her out of here.
We ask he if she wants to go somewhere and she answers with an urgent Yes! I stop by the dining area to find The nurse and let her know we’re taking Lynne out. She has a worried look and tells me softly that she is still agitated and that she doesn’t recommend the trip. I tell her that we understand the risks, but our experience has taught us this will help. She gives a hopeful nod as I walk away. Downstairs we have a smooth check out: I walk behind with Lynne and Linda races up to the front desk to sign her out on the kiosk. The dear Concierge is ready at the door to punch in Lynne’s code and as we stride out into the fresh summer air and Lynne feels her relative freedom, and I watch her posture change, her mood shift and the stress creases relax in her face as her whole nervous system resets. “It’s nice out here,” she says and we can’t agree more. She’s moving well. I say to Linda, “I feel like she could use an outing. Let’s start with some food and then see how it goes.” We agree on this tentative plan. Lynne gets into the car with a bit of coaching, and then we head off to Macrina Bakery listing the items we want on the way. Linda will do the procurement while I hang out with Lynne in the shade of the car. With the windows down and the music on, a calmness settles over her and she starts to take in her surroundings: she points out a cute dog, and giggles at a little baby being carried in her fathers arms. She hums and clucks and whistles and giggles at my silly jokes. We lean in and talk and she tells me in broken sentences and half-uttered words what’s going on for her and I respond with encouraging words like, tell me more and that must be difficult, and you are very strong. We sing some songs together and hum along when we forget the words and it feels like old times, like a normal hangout, until I look down and notice that she’s got one pink sock and one blue, that she has a long crinkly hair growing out of the middle of her chin (is it more cruel to cause the pain of pulling it out or to leave it there to be noticed, I wonder), and she smells a bit like sweet salty sweat and something more musty, (maybe feces?) and her shoes give off the odor of gym sneakers. I scratch my leg and come back with some yellow powder in my fingernail: “Lynne, I think I just scratched some of your lunch of my shin,” and she gets a big laugh out of that. It feels good to smile with her.
When Linda returns with her hands full, I jump out to grab the iced latte and water, while she gets in the backseat with the food. Lynne reaches for her coffee and I move the straw to touch her lip, and she takes a long happy draught. Pretty soon the hot quiche is passed up in its box and I take a bite to taste it before Lynne voraciously consumes it w/ great pleasure. Linda and I both love this quiche but we don’t indulge it much with our middle-aged metabolism, so we take delight in the fact that our girlfriend can scarf down all the high fat food she likes. Linda likens the treat to an egg and cheese pizza, and that’s about right. More coffee to chase it down, and then the apple fritter is passed forward, and I rip off a piece for Lynne to try. Its made in a soft croissant dough that is easy for her to chew, so I hold the pastry up to her mouth and invite her to dig in…she’s not sure at first, but then gets her mouth open wide and pushes the sweetness in and takes a big bite. Oh yeah, that’s good stuff she lets us know, and Linda and I shine with pleasure at seeing her chewing until she swallows.
Things are going well, so we decide to roll the dice and head to the arboretum, where we can park and take Lynne on a short walk across a pedestrian bridge to Foster Island. Lynne is moving well and we have a good walk over. She handles the gentle incline well, and again oggles at all the babies and doggies, paying little attention to anything else. Linda gets into one of her stories, dramatically toning the events. Lynne having had enough, turns sharply toward us, saying loudly, ‘talk, talk, talk!’ and then turns as if to walk off in a huff. That’s the reminder we need to pipe down and be less verbal. She does well, but tires before we get to the lake–I urge her, “Just a bit more so you can see the water?” But she has become a bit cranky, and we notice she’s not walking as well now, and confer that her bunion is probably bugging her and that we should turn around. Now, the difficulty begins because she refuses to be directed or bossed, and when she revolts, her reaction is to turn around, and head back toward the lake, in the opposite direction of our car. This has become a common challenge when we walk with her. The trip back becomes a circular path, she heading opposite, us trying to turn her around, her resisting our control, us giving in but then drawing the line when it gets to futility. If we take a stern tone she rejects our paternalism. If we pander and try to sweet talk her in our little kid voices, she mocks us with embarrassingly accurate likeness to our voices. We own it, and say, “OK fine, we’ll talk to you like a friend then. You need to stay on this path with us so we can get to the car. Otherwise, you will be in more pain.” Some combination of persistence, patience and trust works together to help us on our way and we do get back to the car. She is antsy as I drive home, and draws my disapproval when she slips her seatbelt off her chest. I tell her, “No Lynne, that’s not safe, and you need to keep it on.” She complains and acts like she doesn’t know what I’m talking about, and I invoke my inner mother, by somehow safely driving with one arm while using the other to put the belt back in place. At a stop sign, I look her in the eye and tell her I need her to be good in the car and leave her belt alone. She drops it after that and alternates between putting her feet up on the dash, which I remove with a swipe of my hand. We get her checked in and back to her floor with relative ease and even though her moods are still swinging a bit, we have returned her in much better shape than before.
We are both relieved and a bit surprised at how well things went given where we started the afternoon. As we check out at the front desk, I see The nurse in the lobby and approach her and say, ‘we made it!’ with a chuckle, acknowledging our good luck. She smiles with relief–I know she was truly worried about what might happen and whether Lynne was stable enough. We saw that as a possibility too, but we also know, through at least 50 different experiences over the last 14 months that going outside, getting out of assisted living, helps Lynne, that she reconnects to herself, as if her nervous system responds and finds a new equilibrium.
I ask the nurse if Lynne has been generally expressing agitation or if it’s just a bad day. The nurse indicates that the condition is progressing and her mood swings and aggressive behavior are increasing. I thank her for her patience and understanding and apologize for Lynne’s earlier transgression. She comments that her behavior is expected and not a problem with staff, but when she starts aggressing toward other residents, then that will require a response. I ask her if they will have to increase her anti-anxiety meds and she mentions consulting the psychiatric nurse. She is eager to remind us that, ‘None of this is Lynne’s fault, we know this is the disease.’ I’m so happy to know Lynne is held with such compassion and skill.
Linda and I debrief for a few minutes in the driveway–Lynne’s family are frustrated and looking to move her. We had a fire drill last weekend, where Jim texted us the day before and told us he had found a nice quiet home and requested our help to move her there the next day! Wow, I thought and wondered whether this choice would work out, and how Lynne would handle the confusion of the transition. It turned out to be for naught becuase the nurse/manager of the home decided overnight that Lynne was too much for her team to handle (big surprise!). Linda and I heard this news with relief. We have done our research and we know our friend. A quiet home with physically subdued and cognitively unavailable people will drive her nuts. And she needs space to roam and stretch her long legs and work out her nervous angst. She needs to be in an active yet quiet place with lots of cognitive well caregivers. She’s treated like a rock star and a special person, partly because of her young age compared to the rest of the residents, but also because the staff respect her as one of them. They know she was a skilled caregiver and special education teacher. They respect the resilience and self control she has demonstrated all these years. They have skilled and compassionate staff. They know her and everywhere she goes, no matter what floor, people, staff and residents and guests alike greet her, want to speak with her, treat her with honor. We doubt any small private facility will have the space and stimulation that she needs. We hope together that she will stay here where it is familiar and safe and caring. Or that Jim can find another place where the staff will love her and are not shirk from her condition, where she can get better meds and therapy for her current state.
And we are not afraid of her either. We know it will be challenging as cognitive decline progresses, but Linda and I are strong, we are durable, and we are united in our commitment to help Lynne have at least some semblances of real living every week. The Girl Scouts are right: the buddy system works.