Hospice & Palliative Care

On Tuesday, January 18, our family enrolled Lynne in Hospice and Palliative Care with Continuum Care of Washington. The goal of palliative care is to help manage Lynne’s pain and reduce the side effects of medication required for her treatment. The goal of Hospice care is to treat Lynne as a whole and manage her symptoms rather than treating Alzheimer’s. Continuum will provide resources for medication management, skilled nursing care, medical supplies and equipment, and spiritual and emotional support. Continuum was recommended to us by the Aegis medical director based on their relationship with Continuum Care for current and former residents.

Lynne will remain in her apartment at Aegis receiving its current hospitality services with the added support from Continuum services already provided to current residents. A Hospice nurse will visit her once a week and a home-care-aide two times per week under the direction of a new primary care physician and liaisons who can assist us when we need more help.  The Hospice nurse and home-health aide know Lynne and are excited to care for her, so Lynne should welcome the continuity in her new plan.

Continuum responded effectively and thoroughly since late last week to complete approvals and assign staff on Tuesday. We are pleased with the extra care Lynne will receive in her current stage and her new team. Continuum prepared a 90-treatment plan based on their current examination and will follow up with a second 90-day care plan, followed by successive 60-day plans.

Continuum accepted her for care because of concern for her weight loss, frequent wide emotional swings, and two epileptic seizures last summer. Continuum hopes their additional services could reverse her weight loss and stabilize her moods to permit taking her off Palliative and Hospice Care. Aegis staff confirmed other residents have been taken off. If Lynne is removed from Continuum Care, it would only be temporary because she is in the last stage of Alzheimer’s.

Lynne’s brother, sister and her boys support the extra services she will receive. Lynne continues to welcome phone calls and cards, and visits when we return to post Covid restrictions.

Gems of Joy

Today’s post is from a longtime friend of Karen’s and mine who shared with me after my post about shifting my care during frequent mood changes (1/5/21 Shifting with Her Moods). Her sharing from her experience helped me, and I thought would be helpful for readers..

“ I read your Facebook post on shifting moods and it took me back to the 3-4 years we spent with my mother-in-law who had advancing dementia.  I’d like to share with you some of my ‘learnings’ during that time—some from reading, some from learning from my communication mistakes.  I hope they can help you realize that you are doing the best you can under constantly changing circumstances.

“I found that I had to give up my ‘teacher and reality orienting’ roles that I thought were so helpful.  I read an article that reminded me of what I knew worked so well with children: meet them where they are, go into their world and let them lead you.  I thought of that when Lynne said, “I hate this place.”  Letting her know that “I hear you,” or “This is hard, painful,” or something to that effect helps validate what her reality is for that moment–she’d rather not be there.

she went through multiple moods with tears, pushing me away, shouting at me, then smiling, focused, following me in and out of her apartment.  “My MIL’s mood swings were a challenge for me—until I realized that I was taking them personally, thinking there was something I could do to make them better.  My presence was my gift to her, whether her mood was positive or negative—I tried to be a sponge and just absorb and accept and witness them.  It helped me that I knew she would quickly change, and, better yet, would not remember or “accumulate” these unhappy moments as memories.

I had not helped her.” I cannot fathom how painful it must be as a parent to be unable to take away my child’s pain, the one thing (after unconditional love) that we see as our role.  But then I reviewed your description of your time with her.  You gave her nourishment when she couldn’t do it herself, you danced and laughed with her when she felt like it, you accepted her following you in and out of her apartment— all with love and acceptance of the moment.  It all helps—but those times cannot be exchanged like green stamps (if you remember them) to lessen those painful times for her.  I will pray for more joyful times than painful ones, more movement and engagement than withdrawal — perhaps that is all that can be hoped for.  Gems of joy to be gathered and returned to when times are tough.”

Shifting With Her Moods

Happy at 6:00 pm

At dinner Monday night Lynne was lackluster, listening to music on her headphones and verbalizing a few verses with her lips. She ignored her plate of gravy, beef, noodles and green beans, so I stabbed a bite of beef with a noodle which she let me put into her mouth. She let me feed her every bite. Staff gave both of us a slice of carrot cake for dessert with my own fork.

We walked to her apartment to watch TV, but after we watched repeated ads of Medicare Plan C, she said, “I can’t stand this,” and left the room. We laughed when we danced a little bit. We walked the halls as she went through multiple moods with tears, pushing me away, shouting at me, then smiling, focused, following me in and out of her apartment. She says, “I hate this place.” I tell her “Lynne you are safe here. Everyone loves you.”

Sad at 6:00pm

Finally, I turned her over to the nurse who said she had had a pretty good day, but she’d get her ready for bed. As I slipped out the door to the stairs, I heard her in the hallway sobbing and yelling, “What did I doooooo?”

That yell drove me to the edge of despair. What could I do? I had not helped her. I felt helpless. I expected and hoped she would switch moods again. And the nurse would help her, even sedate her. I closed the door and walked down the stairs. Her cry kept haunting me.

When I returned late that night, the caregivers said she had a pretty good night. They had the pack and headphones ready for me instead of having to look for them as we often do. With those readily available, them watching me feed her, offering me cake and my own fork, and now their assuring me they calmed her down, I felt like we were a team to give her care in this more depressing part of our journey. Her determination inspires us all  

Sad and Happy Times

Sunday night she was wearing her cotton salmon sweater and tights with both shoes on and matching green socks. Her face was deadpan. She sat in a chair next to the large TV Screen facing the residents who were watching the TV. She had on her fanny-pack, but her headphones were on the medicine cart. I put them on her, and she focused her eyes as she adjusted the fit until she smiled. I am not sure how often she enjoys them. She kept them on while I was with her.

She likes to go down to the lobby. I hugged her in the elevator and told her she was beautiful. She grinned. I said, “That was good. Can I give you another? “ Yes.” I hugged with my head on her other side. “There, that’s my left side hug.” She laughed, pushed me away. “Dad, stop.”

We had to eat dinner in her room with the new Covid- Omicron precautions. I took up the dinner with two small plates of shrimp and noodles, two chocolate marshmallow ice creams, and two cokes. Her two-person black table only held two small plates and the drinks. Lynne sat with one knee crossed over the other without eating before leaving to walk. She roamed the room until she opened the door and left. She frequently walked away from dinners in the lobby where I could watch her until she circled back to sit down. I wondered what to do up here? Walk with her as the food got cold?

I decided to brace the door open with a hand weight. I ate a few bites and decided to move my chair out to the doorway where I sat until she walked toward me. When she saw me, I invited her into dinner, but she sat on her bed. I was upset she was not eating dinner because her weight has dropped by over 20 pounds. I wanted this to work.

I stood over my plate to demonstrate eating the tasty shrimp, which lured her to the table to eat with her fingers until I got a fork inro hand.  Then she left the room, and I went back to my seat in the doorway. I got some funny looks from caregivers, who helped point Lynne toward me. She returned and sat on her bed until she got up to sip her coke and left again. She came back to eat half of her ice-cream and later I spoon fed her the rest.

I wondered if she would watch TV, so I moved her table to where the stationary bike was located and moved it beside the window. I scanned channels until I got the Time/Life ads for 10 Bob Hope CDs with jokes, celebrities and beauties galore. She ignored it. Nothing worked, but I could not quit.

Sometimes she returned to sit on the bed calmly and sometimes in tears. I held her hand and said, “You’re safe now, you’re OK.” And she would settle down until she left again.

I took the tray out and shut her door. She and I walked, sometimes letting me hold her hand, sometimes folding it on her stomach and not letting me nudge it out. She had tears, turned down mouth and sagging face. She would purse her lips, grit her teeth, and pull away from me, saying, “I can do this.”

Finally, she returned to the chair by the TV with her arms folded and one knee crossed over the other staring in the distance with an expressionless face focused on the music in her headphones. She ignored an inappropriate savage war movie.

When it ended the nurse switched the channel to a peaceful video of Northern Lights to blend with the classical music from the Aegis hallway music. Lynne stood so I slipped off her headphones as she headed to the nurse who hugged her and said, “I’m always so happy to see you.” Behind Lynne’s back I waved thumbs up to the nurse and she nodded goodbye.

My thoughts are spinning around the increase in Lynne’s sad moods, restlessness, and awkwardness. I was disappointed, upset with myself. Why? I knew this was coming. I expected it. What did I expect of me? I expected, maybe hoped is a better word, to find ways to rinse away her sadness at every passage. I don’t like to feel like I’m failing. She’s failing, but I have trouble failing her. I’ve got to find news ways to help care for her. And give myself some grace, I guess.

True Influencer at 12

Lynne holds an unseen photograph of Katie’s two grandchildren from Katie’ son, the boy Lynne babysat.

Lynne’s 6th grade teacher, Katie, was so wonderful Lynne wrote notes and announcements to her over the last 40-years. Katie sent this to Lynne and all of us for Christmas 2021.

“Lynne, I was just thinking about you last week when I saw a young girl winning a spelling bee. Back in your 6th grade the Lansing School District decided to hold a district wide spelling bee. In our classroom you and Jeffrey were the last two students standing, and with the next word Jeffrey misspelled it and you won.

At that point in time you were so disappointed that Jeffrey lost — you had been coaching him and he was working very hard on the spelling list — that you came up to me and asked if you could pass the win to Jeffrey. Long story short. we called in the Director of Curriculum who ruled that you were the winner according to the rules.

That day was a day when you became a teacher of the year in a room with 28 other people. You taught all of us the beauty of a perfectly unselfish decision. There are so many wonderful memories I have of you during the last year you were in elementary school, all of them delightful.

However, that one memory will always stand out: you were a true influencer at the ripe age of 12. After your example of kindness, the entire classroom became a team of one, more careful of each other’s feelings and less quick to tease.

The curriculum director had a second thought about a district wide spelling bee and simply let classrooms have the national list if they wanted to participate as a classroom.

So, Lynne, just another reason to love you and thank you for all you have done for other people everywhere. Love Katie.

P.S. Lynne’s Alzheimer’s had not erased her memory of Katie and the spelling bee.

Christmas Visits

Christmas Visitors. Yesterday Nancy reported they did a short walk outside in the fresh air and inside at Aegis. She saw many friends followed by a little chocolate goody and looked at mountains on the top floor for a nice visit.

Lynne told Nancy her foot hurt a little bit and at lunch today told me her toe hurt, so I took off her sock and there’s quite a crust underneath her nails on two toes. We showed them to staff, and they’ll call for the podiatrist to clean that up. WeI think keeping her shoes loose she’ll be OK. She wasn’t wearing her shoes this morning.

I shared a Christmas card from Susan, a former caregiver at Aegis along with Pam’s (Mom’s) fudge. Last night we listened to Christmas stories from Craig and a nice dinner.

Tomorrow I ordered a birthday cake for the Life’s Neighborhood residents to celebrate Lynne’s Mom’s birthdate.  Thursday her brother and his family plan to come down Thursday when the weather is better.

Breakout Visit

Lynne and I broke out of Aegis to go to Cafe Flora, a vegetarian restaurant on Madison. We ate artichoke and spinach dip with sourdough bread and a polenta with mushrooms entree. It took a while since Lynne wanted to explore a few times without her mask, making it an interrupted, but satisfying dinner.

We also celebrated a Christmas party at the Social Hour with a performance from the Aegis resident thespians.

Lynne is free to be visited in the facility or take her out for a walk or visit. You need proof of vaccination and picture ID to see her or take her out. She’s holding up well, considering.

Birthday Party with Covid

Lynne, Photos, Pam and Covid

Ten of our family members and a colleague threw a superb birthday party for Lynne at Aegis assisted living on Saturday the 11th, less one granddaughter who joined us by cellphone from her campus in Montreal. Each person shared fond memories from pictures and cell phones to mix into a swirl of celebration as Lynne and everybody recalled old haircuts, dresses, skirts, outfits, hairdos and bodies from birth to motherhood. Lynne stayed engaged in her chair for an hour-and-a-half as she felt everyone else having as much fun as she did.

On Tuesday Pam called from Chico, California to say she had Covid, and her husband had symptoms that were later confirmed to be Covid. All party goers have tested negative, including Lynne who had to go into quarantine from external visitors until her second negative test this coming week. Pam’s fever broke last Thursday, and her husband is recovering from his symptoms.   We feel blessed and fortunate we have contained Covid.

A Bumpy Ride

Caring for Lynne with her Alzheimer’s can be a bumpy ride to be sure she is well fed, cheerful, happy, safe, pain free, and enjoying love from Aegis caregivers and friends staying in contact.  #Alzheimers #Alzwa #alzauthors #alzheimersSpeaks #endalz @ALZAUTHORS @james_s_russell

Caregiving for Lynne has become a bumpy ride.  A few nights ago, I arrived at 5:45 pm to see Lynne leaning backwards, tilting to her right with her right hand on the small of her back. She looked calm until she saw me and broke down in tears pleading, “I want to go home.”  I hugged her a while.

“He kicked me.” Who? But she did not answer. I said, “You’re OK now.” She stopped crying. A little while later she turned to me with wide eyes, “He kicked me hard.” A caregiver said no man on the floor could do that, and I have not seen one. Staff agreed she had been leaning backward since this morning. Another caregiver told me she saw Lynne leaning and guided her back to her bed to avoid another fall backward. Staff, including the head nurse, did not know what else to do. I suggested they find a gait belt used by physical therapists to hold on to unsteady walkers. I hugged her and pulled her forward on her feet and I think she walked a little straighter when we went to dinner.

I read her notes from friends and fellow students who earned their Masters at Seattle U when Lynne was attending. A professor had contacted me and helped link us together. She remembered Katie, her 6th grade teacher, JT and Terry, students who remembered her fondly. I hope to get us all together.

She ate little but finished her diet coke. Said she was in pain and said it was her foot, so I took off that shoe, but a short time later she wanted to lie down because “it hurts.” Caregivers and I can’t find the source of her hurts, but that day she may have had lower back pain from leaning backwards. When I returned at 10:00 pm to pick up her headphones to recharge, Lynne had stayed in bed for a while until she walked out of her room to say her feet hurt. The med tech massaged them and put her back to bed.

The next day I arrived at 5:50 pm I was told Lynne did not lean backward that day and had a pretty good day. She was in the Life’s Neighborhood dining room without her headphones and scared of somebody. I put on her headphones, and she settled down as she listened to The Chicks. We walked the floors a little while until we ate dinner in the lobby. We had two dinners of chicken cordon bleu, peas, rice and apple pie with ice cream. I sliced her chicken and when I finished mine, she said I could eat her chicken until I had three small bites, when she finished them with her fork. We ate our pies and ice cream. We had a mellow time as she nodded her head to the music and mouthed some lyrics.  A few people came by to say hi.

We joined a party on the sixth floor where we drank pomegranate cocktails as we chatted with other residents. We walked down each floor meeting caregivers and people until we reached her floor. By that time, she was cheerful, sang, smiled, said I love you, looked at TV and said out loud, “Call the Midwives, which we watched we until she asked to go to bed at 7:25 pm.

Monitoring Changes in Meds

We have changed medications to reduce Lynne’s anxiety in the evenings and eliminate the side effects from previous medications. Medical staff and the nurse have asked me to look for triggers that might increase her anxiety, which would allow us to manage the triggers without increasing medications. Last night I visited her for over two hours and believe I was able to eliminate several triggers. I was thankful I could enjoy two hours and lighten her load, and possibly reduce unneeded medications. It is one of the joys of being a caregiver.

Lynne sat very still in the dining room without focus and headphones, but her backpack with her cellphone was still on. Two caregivers were reading their cellphones at one table and the nurse was working at the medical cart. I read Lynne a note in a card from a friend named Karen, whose name Lynne recognized with a smile on her face and a sparkle in her eyes. I asked the nurse to find the headphones and when I put them on Lynne’s head, they picked up the music from the cell phone in the backpack. She relaxed as she focused on the music. How can we alert all caregivers on all shifts to search for headphones and put them on her to see if they’re working because Lynne relaxes with the music?

She stood up to head down for dinner, and said, “Oh that hurts,” as she pointed to the back of her foot. I took her shoe off, but the heel was hard to get off. The heel strap was too tight, so I loosened it and she slipped it on much easier. She smiled, “That feels better.” She didn’t complain about her feet after that. I understand the podiatrist was going to see Lynne on Thursday, but I haven’t heard anything. The nurse had administered Tylenol to reduce pain Lynne was unable to identify, a trigger.

We had a pleasant dinner followed by watching most of The Sound of Music in the theater, although she walked outside a few times until she wanted to go back. She smiled at me and said, “I like this.” Lynne often sang the lyrics to the sound track. At one moment an aged resident in a wheelchair slowly rolled toward the door calling, “I need help.” It upset Lynne and she got up to help, but a caregiver assisted her. Lynne was still upset and walked into the lobby until I told her the woman had help and she was OK now. Lynne relaxed and we went back in.

Shortly afterward, she said she was ready for bed, and went willingly and pleasantly with the caregiver when I left at 8:20 pm. Using music, adjusting footcare and observing incidents which cause anxiety are ways I feel my caregiving can make a difference, especially when staff want me to give feedback about possible triggers.

Thanksgiving Blessings

Niece Maysee makes the University of Oregon Hip Hop team.

Lynne has had several visitors this past week: Harriet, Sandy, Susan. They’ve visited Starbucks, Queen Bee, the lobby, and a walk around the street. At times she seemed subdued, at times lucid, (she told a caregiver, This is my friend, Susan). She sang songs by Adele and ones on a playlist we listened to at dinner. Her feet seemed to hurt, so I bought her new shoes, and her foot will be examined. I sat quietly beside her while she watched other residents with severe immobility, commented on their status by name, and seemed even ready to go help. She’s lost weight and walks less. I like to give her exciting news, like a photo of her niece with a dance kick to celebrate making the Hip Hop team at the University of Oregon. And telling her every day she is going to a Thanksgiving dinner with her boys and Dad and Margo. And Simon has his CNA certificate. I love being with her and she seems to enjoy it. We wish you a Happy Thanksgiving.  

One Visit At a Time

Lynne is on new medications because she has been anxious and aggressive at times. The medications were planned if needed after we removed the ones she was taking. I have found her anxious on her floor. I believe some residents on the floor have advanced to more disruptive behaviors. I think Lynne is disturbed listening to those behaviors. I have a hard time knowing whether medications are the best way to reduce her anxiety compared to reducing the time she experiences the disruptive behaviors.  Friends and I have experienced her different moods.

Harriet, a friend, visited a week ago and sent me this message. “Lynn took one look at me and got upset, saying no, no, no. I told Lynne it was OK, and I didn’t have to stay. I offered music in her room, but she did not want it. I told her it was OK, and that I loved her. As I left, she whispered that she was sorry. I tried to reassure her that she was allowed not to be in the mood for visitors. When I came back the next afternoon, I got a very happy reception in a big hug, our usual happy Lynne.” Harriet’s most recent visit included a stop at Queen Bee followed by listening to a guitar player/singer at Aegis. “As usual Lynne knew more lyrics than I did. Lynne stayed to listen to the singer when I left.”

Last Friday night Lynne and I drove through the Christmas lights in University Village which she noticed. We listened to John Prine as she sang lyrics. We ended up at the Madrona Arms drinking a half-a-glass of Chablis and eating fish and chips. People were packed around every table but one, with energetic voices celebrating Friday night. People casually watched NBA basketball on four wide screen TVs mounted on the four walls. Waiters and waitresses hurried from tables to the bar and kitchen. Lynne smiled as she watched and listened. She turned her face to me and made one comment. “I like this.” She was ready for bed when I turned her over to the staff on her floor.

And as you can see, she enjoyed squeezing onto a couch between her sons and me. I take each visit as it is and am deeply thankful for all the visitors she receives

Caregiving for Lynne and Me

Sunday afternoon dinner

Lynne and I walked to my apartment under an umbrella able to shield parts of us from the cold rain. Lynne commented about the cold so I drove her back after our Wednesday movie night. She picked Dirty Dancing but didn’t like it, so we finally settled on WTA tennis in Europe. Uber Eats delivered a large healthy burrito for her and she ate every bite. She tried on clothes from her winter wardrobe and chose a black down jacket (“This is really nice.”) and a warm velvet vest (This is really nice.). She circled the apartment frequently wondering where she was until she saw Dad’s face, broke into a smile and put her arms around me. It wasn’t as smooth as I’d planned, but she had a good two hours out on the town.

She is blessed to have friends who also expand her experiences. Nancy messaged me on Sunday, Her presence was really good more engaged more verbal more physically aware she was dancing with us and she was having a blast twirling me around and she twirled and she danced like an Egyptian and she was even snapping her fingers to the beat. Email from Nancy whatever you’re doing is working well dad she is experiencing real life it felt like she was back for a while I’m not going to expect anything or need it to be that way I’m just resonating in the feeling of our spirits dancing together mingling with freedom and spontaneous joy.1

Last Friday night I talked with her about my son, her brother, the same way I would have talked with Karen. He is working with a therapist, (I am working with a different one), about grief with Mom and Lynne, and other issues. Lynne was his best friend growing up. She listened silently to me talk about him, pausing between sentences with her eyes focused on mine most of the time as we ate our fish and chips dinner. After dinner, she stood up at the end of the table and hesitated with a look of concern on her face. “Is he going to be OK?” I smiled broadly as I said yes,, because he is very pleased with his therapist. Her head nodded, her shoulders relaxed, and her smile returned. “Good.”
Harriett and Terry, neighbors at a time babies were arriving almost everywhere, visit Lynne Saturdays to be with her on walks to the school playfield or drive her down to Madison Park for iced tea and lemonade. Harriett messaged me to join her Starbucks for a “cuppa” last Friday. When I sat down she said “What do you need, Jim?” She knows caregiving from years of weekends driving to Portland to visit her dad who had Parkinson’s and dementia, and her Mom who cared for him. He appreciatedmost for caring for for his wife. “I mostly cared for my Mom.”

I confirmed I needed support to care for Lynne, for me. I treated myself to see Jesus Christ Superstar for a Sunday matinee. She said next time send out a note. Somebody might have wanted to see it. Duh. That would have been more fun. It takes a village to give deeply felt care, and our village is taking the time, for which I am deeply grateful.

Remembering Footloose


Monday, 10/25 I will be on a live podcast on the Alzauthors.com Podcast. https://alzauthors.com/podcast/ It will be available after the live broadcast.

Two podcasts have inspired me to add some ideas to caring for Lynne. The first came from Wendy P Mitchell, the podcast almost at the end of the list of interviews on the podcast website. She was diagnosed with Alzheimer’s in 2014 at the age of 58. She writes a daily blog to give her facts about the daily world which she always forgets by the next day. She co-wrote a book that has received awards and let to many visits with doctors and speaking engagements. She said her Dementia wants her to sit and not think because she gets more peaceful. She learned she could fight by staying more active.

For example, I learned that when her daughters helped her on with her jacket every time they visited, she forgot how to put it on. She told them to stop and has relearned how. I wanted Lynne to relearn how last night in the first of our weekly Wednesday night movies with dinner.  I have had trouble helping her put on her red coat. Yesterday, I gave it to her to put on and helped her only after I saw one sleeve was inside out.  When we got to my apartment I told her I’d hang up her jacket and she took it off. When we got ready to leave, I gave her the jacket and she put it on.

Another idea Wendy emphasized is she could restore some of her memory if she worked at it. I turned on Footloose with Kevin Bacon which excited Lynne. She got up right away and walked around. I watched it, I liked it. After two trips around the apartment, she sat down and watched it. We watched it though our Indian Mirch Masala dinner, (“This is really good,” she told me). At the end she was singing the lyrics better than I was. She wanted to hug me with a big smile, so we danced a little to the music. She got back and was ready for bed. I was happy because the time from after dinner to bedtime seems to be her most difficult time because there is little for her to do.

Her future weekly schedule should include: Wednesday Movie night (I have a list of 12 dance musical movies from the 1980s-2010); the boys on Thursday night, car rides on Friday nights, friends on Saturday, Movies and dinner on Sunday afternoons.

I have some other experiments to try. I’ll keep you posted.

Monday, 10/25 I will be on a live podcast on the Alzauthors.com Podcast. https://alzauthors.com/podcast/.  It will be available after the live broadcast.

Nothing Gold Can Stay

Nancy Hilpert

The Secret Sits

Poetry and reflections by Nancy Hilpert, Lynne’s friend. They enjoyed gold in the fall of Lynne’s life as she courageously endures Alzheimer’s. Lynne focused her faded blue eyes on me as she heard every word and smiled.  #alzauthors #alzheimersSpeaks #endalz #Alzwa @ALZAUTHORS

Robert Frost

We dance round in a ring and suppose,
But the Secret sits in the middle and knows.

Nothing Gold Can Stay
Robert Frost

Nature’s first green is gold,
Her hardest hue to hold.
Her early leaf’s a flower;
But only so an hour.
Then leaf subsides to leaf.
So Eden sank to grief,
So dawn goes down to day.
Nothing gold can stay. 

Hi Friends, 

happy October!  The summer who overstayed her lease has definitely fled and we see and feel this seasonal shifting happening. 

We are getting a nice mix of rainy days and sunny mild days and the coloring leaves on the trees are still lingering between green and wherever they’re headed…yellow, gold, orange, red, maroon, brown…

All of this makes for good walking weather and great visual stimulation as the bright fall colors light up cloudy skies and brighten the more noticeably shortening days

I love living again in a neighborhood where the streets are lined with deciduous trees

it takes me back to my childhood, living in the little farm town of Deer Park in Eastern Washington, walking home from grade school, down the Maple and Oak tree lined Main Street. Those beauties must have been planted long before because they were massive and, –just like the ones I live around now in Seattle, also planted long ago, –bounteous in their delivery of leaves come the Autumnal drop in temperatures. 

I loved to scrape and stomp through the massive piles that filled both sides of the streets.

I was out walking with my friend Lynne the other day and couldn’t resist jumping off the sidewalk into the piles of dry leaves, crunching them under my feet, the sound was exhilarating.

I was doing it to both entertain myself and to also try to lift her spirits. 

It’s so great to finally live near her, finally, to be able to pop by her place and take her out for an iced coffee and savory tart at our fave bakery Macrina.

She’s been dealt a tough hand with a terminal diagnosis, but she’s courageously enduring. 

She says to me she’s waiting.

We know it won’t be forever.  

“Nothing gold can stay.”

Time with her is precious, but who knows how long that will be available to us. 

It’s scary and sad to consider losing her. Saying goodbye sooner rather than later.

This too becomes a practice if I follow the Secret and stay in the Middle.

Being with it, I can touch into that gently, knowing its tender to consider that those we love most, who love us most, will not be with us at some future date.

And I can see how much more is at stake for her than for me.

And when I feel that sadness, I can let it roll down my cheeks freely and feel it heave through my chest, like a wave.

And when she asks me ‘what’s wrong’ I can look her in the eye and say: 

Everything and Nothing. Everything is perfect as it should be in its time.

And I can open my music app and play some Dolly Parton on the speakerphone as we return to her facility, singing loud as we march arm in arm down the sidewalk, stomping on the dry leaves, not caring how we appear to the world around us, except that we are transmitting joy and connection. She giggles at me, and this lifts my spirits.

We know they won’t be crisp and crunchy for long, once the rains soak them

Now is the time to sing loud, to stomp and scrape and crunch.

Now is the time to practice letting go.

Now is the season of sitting in the middle, of soaking up that gold.

Paperboys’ Concert Goers

Patti, a friend and colleague of Lynne’s, invited us to join her at the Paperboys’ Concert at the Tractor Tavern in Ballard last night. Lynne jumped with joy at hearing her name and thinking of a concert. We showed our IDs and Immunization verifications. Patti & Lynne rocked on their feet until late in evening, around 9:30 or so. I even stood up to revive my dancing feet until a little rhythm returned from their early days. What fun!

Vistor Rules After Quarantine

Lynne Wanting Dad to sit down to dinner

Good news. Aegis is allowing visitors for Lynne based on CDC Guidelines and updates to keep our communities safe from the virus. All visitors entering Aegis communities must provide proof they cannot infect residents: Full COVID-19 vaccination and be at least two weeks beyond the second shot, or Negative COVID test administered within 72 hours of the visit, or being fully recovered from COVID-19 within the past 90 days, specifically documented as such by a physician.

Tonight the boys are visiting and tomorrow night Patti, a good friend, has tickets for the three of us to see the Shed Boys on stage. Plan to visit if yoiu can.

#Alzheimers #Alzwa #alzauthors #alzheimersSpeaks #endalz

This is Really Good

“This is really good.”

On September 2 Lynne’s Aegis assisted living reported two vaccinated residents were infected by an asymptomatic caregiver. As a result, they established a lockdown requiring residents to stay in the apartments unless guided by a caregiver to individualized activities. Residents eat meals from cardboard boxes in their apartments. I was sorry to hear about their covid infection especially after all the significant protections they have established and enforced.

During the first covid lockdown conditions, Lynne’s social skills, reasoning and cheerful mood declined rapidly, so this time I requested, and was immediately give, essential caregiving permission. She and I can walk around the empty lobby and outside to Rusell Miller park. We eat lunch and dinner in the lobby, including food delivered through an Uber Eats gift card from one of Lynne’s friends. Every meal she gives me a big smile and says, “This is really good.” 

Aegis tests every caregiver and resident on Friday, and the September 3 results show three residents tested positive, but no new care givers. The lockdown is extended. The last I knew, Lynne was the only resident given an external essential caregiver, so I am placing myself under quarantine and wearing a mask whenever I am out. I have received the third Pfizer vaccination. We will persist. Thanks for all the support you give us.

Customized Caregiving for Lynne

Several weeks ago, our family and Aegis management in a six-floor assisted living facility developed a unique plan dedicated to the belief younger, aggressively active residents with severe dementia deserved customized caregiving outside the confinements in severe dementia memory care units.  We have seen the effects and it is fitting and proper to describe improvements in her attitude and caregivers and I have observed.

She is more helpful to memory care residents and approaches those who are mobile, but respectful. She stepped in front of one quiet, slower walking, pleasant gentleman to say, “I really like you.” He was a little flustered as she walked away. She is participating in more activities for all residents and staying in them longer. Staff in the memory care unit say she is more pleasant and relaxed. She had her haircut and gets lots of compliments. Lynne’s depression medications have been reduced and she sleeps better.

She roams the lobby and other floors more independently, meeting friends and staff. An accompanier sits by the front door to walk with her and several other relentless walkers when they walk out the front door. She and I eat dinner together in the lobby instead of the bibbed dining area in the memory care unit. “I like this better,” she confided to me at one meal. She even abandons me to dine with friends in main dining room where I can’t go because of Covid restrictions.

After I found her walking the halls in her pajamas late last night, she and I settled down in the memory care unit dinning room with a large screen to watch What a Girl Likes with Amanda Brynes and Colin Firth. A review by Rotten Tomatoes gave it an exceptionally low rating for being childish slapstick comedy young girls might like. Lynne and I enjoyed it, laughing all the way though it, even laughing at my jokes. It felt as good as it did when Karen and I watched TV.

Friends Fun and Meatloaf


Friends are keeping Lynne and me busy. Friends Nancy and Lynn walked and talked with her for an hour-and-a-half last Sunday. They snapped the attached picture. Lynne can still walk for hours.

 I took Lynne to Nancy’s new home in Capitol Hill tonight. It’s a condo on the top floor looking west to the Sound and the Olympics.  Lynne said this is very nice.

Nancy asked if Lynne would like dinner and Lynne said sure, so there we were —  eating home cooked meatloaf. Lynne and Nancy walked to the deck while the men chatted.

Meatloaf is probably my favorite meal from the time I was in high school eating two sandwiches every day for lunch. Nancy made it tasty without spices and perfectly crumbly just like my mother did, making it easy to cut on the plate and stay together in the sandwich. That’s no easy feat. By the time I got home I ended up with loaves for sandwiches in the refrigerator and loaves with potatoes for dinners in the freezer.

We ended up sucking Dick’s vanilla milkshakes waving back at her son briefly looking up as he grilled burgers. All in all, a good couple of days for all of us. Since Nancy and her husband arrived, Lynne’s had more fun and I’ve had more fun.

The Shed Boys Rehearsal

Lynne, the boys and I joined friends Nancy and Lynn to listen to The Shed Boys, a Seattle based eclectic group performing blue grass and country, at their regular Thursday night rehearsal, outside on the lawn at Green Lake, near the theater.  Nancy and Lynn shared chairs and treats to add to the experience. We worried about making this trip successful, and we are pleased to report it was. You can see that from the pictures.

We All Need Care

I haven’t posted for a while because too much happened that was too complicated to write. This is a catch-up post.

Lynne had two emergency room hospital Visits. We sat in emergency rooms waiting and waiting for someone to tell us what was going on. It was surreal to sit beside Lynne’s hospital bed. Every 10 minutes, “Ok, I can do this,” and tried to get up to go the bathroom. The first doctors thought she had a TIA that appeared to be a stroke. The second doctors diagnosed a Grand Mal Seizure that lasted two minutes. Her neurologist diagnosed the two seizures as epilepsy. He prescribed medication that should prevent more seizures. Epilepsy occurs in about one-quarter of people with late-stage Alzheimer’s.

Our family was dissatisfied with Lynne confined to the memory care unit. A former care director with an office on memory care’s floor recommended she move in where she could visit the director and help residents in June 2020. But the director left, and the current residents are 20-30 years older, mostly immobile and usually incoherent if they speak. Lynne walked around the floor by herself and viewed those residents every five minutes.

I believe she understands what we say, understands what is happening around her. She laughs at jokes. I think she sees her future in the residents, and it scares her. She cannot help them. She’s been angry when she sees me and walks away. She tells me, You said it would be better. I want to go home. I’m ready to leave. Let’s go. Dad and you made me stay here.

I accept blame for being Dad, but I don’t like being blamed for being me.

We met with administrators and caregivers who immediately recognized things needed to be changed because the resident mixes were significantly different in memory care and in assisted living than when Lynne moved. And restrictions for the pandemic were being eased. Their team quickly responded with ideas.

The changes in activities for Lynne have been dramatic. The new director of Lynne’s floor schedules staff to take Lynne to assisted living activities at 10 am, and 2 pm and 4 pm. Lynne mingles with more social adults, many of whom know her from her early residence. She attends daily stand-up staff meetings. She is allowed to go in and out of resident exercise classes. Lynne likes music activities, trips in vans and happy hour on Thursdays.

She walks around the large lobby where she visits with friends, the concierge, and staff. Four companion guides now guard the back doors, front doors and stairway doors for her and several residents who walk a lot. Companion guides walk with them outside for a distance before guiding them back to the lobby.

She can sit with friends for lunch and dinner in the assisted living dining room instead of the bib covered crowd in memory care. I can order meals for the two of us on the sixth-floor deck. We walk down each floor where caregivers stationed on their floors say hello because they are glad to see her again.

Lynne is more comfortable helping residents in memory care, although her help is usually brief before she wanders away. It’s her thought that counts. She walks with headphones on her head and a fanny pack with her cell phone playing Spotify music. At night I bring dark chocolate and M&M peanuts to exchange for the headphones and cell phones so I can recharge them. She is happy to see me.

I need more care. It feels like I’m sliding to hell on a steep mountain side in scree that is slashing my hands and choking my lungs. I slide faster. It’s bottomless. I never find something to grab to stop the slike. Every plan is futile, needing constant revision. I lost weight. I’m tired of my routine, my diet, my cooking ( or whatever), my prescriptions, my doctor’s visits, my apartment.

I am comforted in two support groups for Alzheimer’s caregivers. I was comforted in my first visit with a personal therapist.

One of Lynne’s friends, Nancy, an innate care giver seems to have adopted me as another father. She, her husband and Lynne’s friend invited me over after Lynne’s second seizure. She’s a spectacular cook, showing us a video of the intricate steps she took to bake a delicious upside down cake with fruit and meringue. Even better I reveled in the laughter and stories of adults relaxing around a meal. Sunday, Nancy, another friend and I drove Lynne to Green Lake for a hike and lunch. Next Thursday we’re going to Green Lake to hear a rehearsal by the Shed Boys, a blue grass and jazz quintet. Lynne’s boys are joining us.

My son and daughter are constant support, but I confess sometimes I shut them out. My son called to check in and invite me to drive up to visit them and my precious granddaughters. I just wanted silence. He tried several ways to talk but I cut him off, not committing to the visit. I couldn’t respond to another voice that day. I felt sorry for him because he cared and tried.  I felt guilty. I owe him a call. I want to visit.

Staff at Aegis care for me. They check with me. I can share with them. They are skilled. The last time the boys visited with Lynne in the lobby, she walked away to eat in the resident’s dining room where we can’t go because of Covid restrictions. The director of activities joined us and swapped stories with the twins about their caregiving experience in another assisted living facility. Lynne returned and we continued talking as if we were in a living room at home. I listened, relaxed, silent, without any pressure because we cared for each other, Lynne and me.

Every Thursday Lynne’s boys visit Lynne and linger afterward to talk with me. I love to listen to them support each other and check up on me. I love to feel them wanting to talk with me. I love that they do most of the talking.

We persist.

Never Give Up Gifting

Lynne & Simon at 1st day of Kindergarten

Lynne’s friend, Karen, visited her. Visits can be heartbreaking now. They can also give her pleasure long after they give us heartbreak. Karen gave me permission to share our messages.

Karen. The last couple of visits to see Lynne have been heartbreaking.  I admire your dedication and persistence.  Lynne is blessed to have you.  She doesn’t show any sign of knowing me at all anymore; she becomes wary and walks quickly away each time I approach. Today, I hoped that bringing some berry tarts and a photo of her and Simon from kindergarten in the Montlake School days might spark recognition, but she still just told me to go away.  After a while I asked a caregiver to put the tarts and photo in her room, said goodbye to Lynne, and departed. Then I got in my car and cried. I miss her so much.

Dad: Karen, I’m so sorry you are also having those experiences. You are helping by going to see her, telling me & people what it’s like, and letting me know I’m not alone. Your visits have been heartbreaking for me also. I have had the same rejections. And it’s hard for me to hear what happened to you because you are such a friend. I hope you understand it means a lot to me that you made those visits. We are in a time when some visits work and some don’t. And, of course, it puts us into a state of grieving. I love her so much, but who I love now is different than who I loved earlier. We all change, so who we love now is never who we loved earlier, but her decline is swift right now. I promise you we will keep working for ideas that help her. I bring M & M peanuts and a dark chocolate peppermint patty in a baggie to give her. She carries them around until she finally pulls the last one out. Now, she smiles when she sees me and stuffs her hand in the bag. I returned her headphones with her cell in a fanny pack playing Spotify Life Channel Radio’s upbeat music. She listens from the morning when I deliver her Starbucks drink until she goes to bed at night after her candy. I wait until she goes to bed before I can get the cell and headphones away from her to recharge them. She’s happy much of the time I see her. I am hopeful her happy lasts.

Dad: Karen, your card and photo created several thrills yesterday. I retrieved them from her room where staff placed the for viewing. I told Lynne, your friend Karen sent you a card. Could I show you? Her eyes widened as she nodded. I shifted her headphones onto her neck to show her the picture. She recognized Simon and herself. I read your note, “To my dearest friend Lynne. I found this picture of you and Simon on the first day of kindergarten. I was there with R, and he was so excited to see his playground friend. Do you remember how Simon and R were likes peas in a pod when they were young? I miss those days and cherish the memories.”  Lynne’s blue eyes glowed.

Simon and the boys visited Lynne that afternoon. Karen’s card and photo jostled loose their fond memories of R, and Karen as Mom’s dear friend through it all.

We must never give up gifting Lynne and each other.

Lynne’s Green Team

Lynne Russell, Kayla Raj and worm bins

Sally Boni posted this on Lynne’s facebook page: This wonderful memory popped up today! Since it’s the middle of summer vacation I must have been finally updating our year in MicroSociety at Talbot Hill. The Green Team, a total creation of Lynne and Kayla, was amazing. Kids, worms, newspaper, left over food, and a little water — a lot of planning & daily lessons on the teachers’ part, a lot of diggin’ in and joy on the kids’ part, and in the end such beautiful dirt! Truly one of my favorite MicroSociety organizations ever! So happy to see this memory today! Thank you, Lynne and Kayla for your very good work!

Kayla Raj commented: This brings back so many memories and so much love! What an incredible growing experience that was!! I felt like part of a power team working with Lynne Russell— our outcomes always seemed to explode exponentially by the kids enthusiasm, her grit, and perseverance! ❤️ Everybody should get to have a teaching partner like this!!!!

Sally Boni commented: My feeling exactly! You were indeed a power team!

Tonight I showed Lynne the Green Team photograph. She immediately grinned. “Kayla Raj.” I told her Sally Boni sent her a message. Her face lit up with Sally’s name. When I read the words, “Green Team,” her eyes widened, and she nodded. She smiled as she looked at my lips reading Sally’s description of beautiful dirt and MicroSociety. She nodded when I finished.

“Kayla sent you a message too.”

“She did?” High praise from Kayla: “power team, outcomes explode exponentially by the kids…. Everybody should have a teaching partner like this.”

Staff loved the photograph and stories. They recognized Lynne’s smile. We went for a walk.  She said, “I love you, Dad.” That’s an improvement from a week ago. Thank you Sally and Kayla.

A Good Neighbor’s Visit

A long-time neighbor and early caregiver for Lynne when she lived home visited her. She kindly shared it.

Ok, here is my recounting of my visit with our sweet Lynne!
I arrived on the second floor to find that Lynne was in the salon, getting her nails done, so I waited a few minutes for her to come down. I saw her come around the corner before she spotted me; as soon as she saw me standing there, she got a big smile on her face and let out a classic Lynne chuckle. We hugged for a good long time, and I handed her the flowers as we talked about the peony bushes she had in her old yard.
She decided she wanted to go sit outside on the deck in the shade for us to visit. I asked some questions about her nails and her day, then I asked if she wanted to listen to some music. She perked up when I played some Cat Stevens and Stevie Nicks songs, all of which she sang along to, smiling a little, looking at me as I sang, and also not remember all of the lyrics!! I held her hand and patted her leg while we sang and listened.
I also showed her some photos on my phone of our kids when they were younger and reminisced with some stories….one was the time C, her youngest boy, cut his head sledding and my husband drove them to the emergency room thru the snow. Her eyes brightened up as she seemed to recall that crazy night.
I told her a story about my son taking a girl to Dicks for burgers recently and that C. was working, but only gave my son a knowing wink, so as not to embarrass him or the girl. Lynne was looking at me while I was telling that story, and she saw me wink, imitating what C did… That story got a good chuckle.
I showed her the video of me dunking my chickens and she thought it was silly and funny – who dunks a chicken in a bucket of water?! (People who have to cool off their chickens in 100-degree heat.)
We talked about Jim’s 80th birthday and her sister and brother’s anniversary.
I asked her some open ended questions occasionally, but she mostly didn’t have answers. We went back to the salon to see if she could get her nails finished (they stopped mid-manicure for my visit), but some one else was there. We went back down to the community room and she had a few sips of a berry smoothie. We visited for a few more minutes, I showed her a photo of a strawberry pie I’m making tomorrow which she thought looked good.

Friends’ and Doctors’ Visits

These are notes from three visits with Lynne from May 22nd to June 22nd. The first is from Lynne’s friend, Edith who gave me permission to share a portion of her visit on May 22nd.

Lynne and Donna on June 22

I arrived around 1:00 and when I got up to her floor, I saw her right away, taking slow shuffling steps through the hall. I lowered my mask and called out, “Lynne! It’s Edith!” She got a big smile on her face. I don’t know if she recognized me as her friend or just someone familiar. But it didn’t matter because she got a big wide glowing smile on her face. We hugged and I asked her if she wanted to go on a car ride to Madison Park Beach.

She said yes and we went to her room with an aide and got her dressed in a jacket and we went down to my car. When we got to my car she changed her mind about going in the car. I suggested a walk and then the coffee shop to finish. At the coffee shop, she got a coffee and a cinnamon roll. I cut up the cinnamon roll which she devoured with pleasure.

When we got back to Aegis, we went up to the 6th floor terrace and enjoyed the views for a few minutes. I found a Garth Brooks playlist on Apple Music and she sang with some of the lyrics. When I complimented her on her voice she smiled broadly again and said that she liked this music.

Then she abruptly got up and went back inside. I quickly followed her and asked her if anything was wrong. She said that she needed to go. We went back to her floor, and she went to the common area and sat down.

I did most of the talking and showed her pictures of my kids, my dogs, skiing and hiking. She seemed to be mildly interested and definitely perked up when she saw the pictures of my puppy Juni.

She didn’t speak much but she stayed present for most of our time together. She smiled a few times and laughed a little. When I asked her if she had any friends on the floor, I saw a spark of the old fire when she said,“No! They’re awful!” It was a glimmer of Lynne before Alzheimer’s.

The in person get together is so much better than seeing her on Zoom. She is declining so fast- it makes my heart hurt.

Lynne had an overnight visit with doctors at Swedish—Cherry Hill hospital Saturday and Sunday, June 19-20. These are my slightly edited texts I sent over the two days. When Lynne’s sister and I visited Lynne Saturday morning she was leaning significantly to her left, and seemed to have tremors in her left arm. The nurse examined her, then had medics come and they’ve now taken her to Swedish. Doctor has seen her, EKG looks ok, no blockages noted, right/left functioning balanced. They are continuing to run tests to determine why she’s leaning so much and why she’s had such a decline in the past 2 months. Dad is with her. Ok to send questions on this chain, it’s just family.

Doctors ran a CT scan of blood vessels in her upper body and drained her bladder. The CT scan and the urine tests were good. Doctors want an MRI as a final test for conclusive results with a brain scan. Doctor saw evidence of a minor stroke in her left brain in the back within the last 2 days, no more than week. That’s confusing because left side weakness would be caused by right side brain strokes. Doctors want to do more tests on her heart., etc., and have her stay overnight. She’s OK with that. They are contacting her neurologist office to consult with them. They see increased brain degeneration. [Lynne cheered up with me the final couple of hours when I was by her side. I fed her and she ate every bite. We talked and joked, and she talked with hospital staff. It was like she woke up from a nap. She was OK with me going home.]

Sunday morning a new neurologist saw Lynne. He doesn’t believe she had a stroke. He believed her leaning and weakness are normal for advanced Alzheimer’s and is recommending to the supervising physician she go home. Next step, he advised we review the clinical data with her primary care physician, neurologist and the medical staff at her assisted living.

The supervising physician carefully examined her vitals and movements and cleared her to go home. She wanted a shower first. The nurse admittedly said it began with cold water. Lynne was miffed. The paperwork is started. I told them I thought her sister could drive us home in my car even though it doesn’t have a siren. She was gleefully welcomed back. We’ve requested a review of her clinical records.

Her friend Donna visited her two days later on June 22nd and gave me permission to post her summary of her visit. Just visited Lynne. She seemed happy to see me. She was quiet but responsive to questions and laughed a little. We looked through her photo album and she seemed to enjoy that. I’d say she seemed much quieter and in an interior space than when I saw her a month ago.

Never Promised a Rose Garden

Lynne in the Woodland Park Zoo Rose Garden.

The other day Lynne was watching a movie in the dining room. She didn’t respond to rubbing her shoulders and hearing “I love you.” I gave her a color photo of her graduating senior with his brothers boys and me. Her face softened when she saw it.  She stared at it.  Looked at the movie.  Looked at her photo. My inner voice said don’t disturb her. I walked the loop on her Life’s Neighborhood floor. Ten minutes later her seat was empty. I caught up to her. She walked with head down, short steps, slowly, constantly. The photo was gone. A caregiver put it in her room for later. I put my hand under hers and she held it slightly for a while, then dropped it. I stopped touching her, respecting her space.

She cannot hold her head up, so she looks at the floor lost in thought. She has a smaller smile and fewer of them. She listened to my lengthy story with pauses between each sentence until I hesitated to organize my thoughts for the last sentence. She grew impatient. What happened? She anticipated an ending. She probably worries about my memory.

She worries a lot. She walks her floor from the door to the garden courtyard past the elevators to the edge of the dining room. She says, I have to stop here. She does not like to sit with the people in the dining area on her floor who spend most of the day listening to music, an activities program, or the big screen TV. She turns around to start another loop. She likes the help from caregivers in the entire building. She likes bus rides to gardens. She was the only resident who walked in the Woodland Park Zoo Rose Garden.

She talked as she walked lost in thought. I shouldn’t be here. You’re just like everyone else. You and Dad are the same. She grabbed her pants and said, I’ve got to go. I ask where? Home. We kept walking.and talking. Can we leave now? That woman (named) is a piece of work.  That man scares me. They’re very strict. I should not have told them. Her voice got softer and softer until she spoke to the floor in a barely audible voice.  Finally I said, “Talk louder, Hon, I can’t hear you.” She said clearly, Sorry, but returned to her inaudible voice. After 45 minutes I said I had to go. She nodded. I turned around and she walked up to a caregiver. .

Lynne’s Aunt asked why I did not send an invitation about Friday video chats, so I decided to update everyone. I did not send an email because she had more visits than video chats. She enjoyed the visits. In the last video chat, she was unable to sit longer than ten minutes.  She walked around the room while I my unsteady hand made her bounce in and out of the video. If someone wants to try a video chat, we could schedule a special time. Her sister wants to try. We’ll see.

The progression of behavioral deficits from Alzheimer’s is organized into seven stages on the Functional Assessment Staging Test (FAST). Her behavioral deficits have declined to the bottom of Stage Six, Moderately Severe Dementia. Her mental age is 2-4 years old. In a few months she could slip into the final stage, Severe Dementia, where she would slowly lose the ability to say any words, walk, smile, sit up, or hold up her head. The last stage lasts 12-18 months.    

Lynne’s Youngest H. S. Graduate

Lynne’s youngest son graduated from Garfield High School Last night. He’ll take two courses at Seattle Central College this summer to complete his Associate’s’ Degree. This picture drew a broad smile from Lynne when I visited her after the ceremony. #Alzheimers #Alzwa #alzauthors

Boys to the Rescue

Lynne and I meandered on a path along Lake Washington last week. I explained my snack system to build up my strength.. “After mid-night I cut a banana in three sections and put two sections in the refrigerator. I slice the first section into small bites covered in chunky peanut butter, and do the same with in mid-morning and the afternoon.”

She laughed. “Dad, stop. That’s too many bananas.”

I don’t think it’s too many. I think it’s clever. I reward myself after writing by eating protein and sugar in healthy doses. I’ll keep it a secret.

Lynne was concerned about a man on her floor.  I promised we’d take care of it. When we returned I reminded the concierge to get her dressed on time for the free photo shoot with her son in his high school graduation robe.

The boy’s father canceled that afternoon because their son wanted to take the photos at the graduation ceremony. I told the concierge to cancel Lynne’s visit. He said, “I’m not going to tell her, and hope she doesn’t remember and get disappointed.”

The excited caregiver on the floor didn’t cancel plans either. She bathed her, brushed her hair and curled the ends, put her in a black sports bra under a deep V-neck full length black and white polka dot dress in her comfortable black shoes. She felt pretty.

The concierge called. “Lynne is dressed and ready to go.”

“I’ll be right over.” What was I going to do? My inner voice rescued me:  “Drive her to the boys home because they canceled it. They’re going to rescue us.”

The boys were surprised. Tucker whirled in his circles to catch his tail. He barked and pushed his head into everybody as the boys yelled, “Stop, Tucker. Sit. Tucker! Tucker!”  The graduate disappeared and reappeared in his robe with mortar board and tassel.  We took pictures and pictures on the sunny back patio.

Time for ice cream. The oldest said, “I can’t go. I just got back from work. I’m too sweaty.” Everybody else disappeared to get dressed and head out the basement door. The oldest reappeared in a clean pair of sweatpants.

It was cold for ice cream. Her graduate zipped up Lynne’s red jacket. The posters listed ice cream, sorbets, sundaes, sherbets. The boys said she had two favorites: scout mint and salted caramel. She ordered scout mint and I ordered salted caramel to share. I warned the boys she will eat the ice cream non-stop and get brain freezes. They took turns feeding her and talking with her.

She told the concierge she had a great time. He told her she looked pretty in that dress.

Checking in with Lynne

5/31, Dear Susan and Karin, I haven’t thanked you for visiting Lynne last week. Of course, it seems to make no sense for me to say thanks when you visit a friend and have a good time. So why do I feel grateful and how should I say it?

It makes me feel good when someone is there entertaining her with a different interpersonal relationship than I have.  I ache when she is alone and I am not going to see her. I urge myself to go more and I do what I can, always knowing I could do more if I didn’t have other things I choose to do in my life. So, I relish times whenever friends care enough to make a special effort to see her. I feel less guilt. I feel more supported.

Also, I like to hear exactly how Lynne responds and how you and other guests respond. I learn from your, and other, visits, get ideas, try other things. I can report other experiences on the blog to encourage other people to visit.

Many, I think, fear coming to see her because they feel uncertain about what to say.  So, I appreciate your willingness to risk a little time that may feel painful, soothed only by the truth that she knows you care. So, thank you.  Dad

6/1  Hi Jim, Thank you for your very thoughtful message. Susan and I really enjoyed our time with Lynne. Our visit worked out just perfectly with time to chat in the hallway, see her room, take a walk in the neighborhood, meet some of her Aegis friends who all adore her and sent her off on her field trip. When she saw us, she greeted us with the biggest hugs!

After our visit, Susan and I met five of our Microsoft Posse for lunch down the street, and it was wonderful to see everyone and talk about our favorite old and new memories. Getting reacquainted with this group the last few years has been so wonderful for me, and it really is Lynne who has brought us together.

Please know we love her very much and would do anything for her. Let us know if we can do more. You, Lynne and the boys are in our constant thoughts. 😊  xoxo Karin

6/1 I’m choked up right now with tears in my eyes. I hope you appreciate how much your care supports our family. Jim

Friends and Joy

Keeping Dad focused on shopping

Two co-workers/friends from the 1990s visited Lynne. “She was happy to chat and walk outside. She seemed calm and listening as we walked arm in arm. Staff supported us with the freedom to visit. Such a joy for us to see her in person.” #Alzheimers #Alzwa #alzauthors

Two Friends a Puppy

Two friends of Lynne since they worked together in the 1990s had a nice visit with Lynne. Kristina wrote, “I don’t think I’ve seen her for a couple years.  Kristine joined me.  We took a long walk in the neighborhood and enjoyed a latte at Queen Bee.  I’m not sure if she recognized me this visit.  She answers questions  but answers are pretty short.  She wasn’t able to direct us to her room.  Makes me sad and reminds me of my dad and grandma who also had Alzheimer’s.”Their trip made Lynne happy as you can see from the smiles on Lynne’s face. And told me she remembered the fun she had with the visit and enlivened with the puppy.

Good Days and Bad Days

New Nails
Bell Choir

Lynne and I have good days and bad days. On good days she had her nail’s done and joined in a bell choir. One visit she finished her dinner and staff gave her an extra plate. She ate most of the chicken and mashed potatoes and avoided both broccolis. She used her fork or used her fingers without spilling. “This is so good.”
“Do want a piece of banana cream pie?”
She shook her head, “No, it’s …”
I corrected myself. “It’s lemon meringue pie.”
She nodded, “Yes.”

Suddenly she shook her head, “That’s (name). She’s a piece of work.” She was listening to dining room voices. She’s upset with residents and staff several times and needed to be restrained. They will slightly increase Resperidone to calm her.
I told her the ultra scan after my vascular surgery looked good. She was pleased.
“I told her the story of the dangerous vascular surgeon’s offices on the 14th and 11th floors. I walked down from 14th to 11th floor and got locked out in the stairways. I had to exit into the garage.” She looked concerned.
Staff said they were locked because of Covid, so I suggested they warn your patients.” “My vascular patients don’t use the stairs. You’re an exception.”
By the time I left the office had full-page signs in a plastic holder. I complained, “Wait, you didn’t give me any credit at the bottom of the sign.” They laughed. Lynne laughed.
I told Lynne I walked uphill for three blocks to the bus stop with my right hip muscles and glutes tightening up so hard I had to sit to recover. The doctor explained the soreness was expected after my surgery. “Keep walking and blood may find a way to get there in 6 to 12 months. If not, you’ll have to live with it.”
Lynne was concerned. I said, “That’s OK. If I have to, I’ll buy a scooter.” She laughed.

Her oldest twin had a boil on his buttocks that made him cry out from the bathroom. I said, “It’s ok now, they were able to drain it.”
Lynne nodded, “Oh, good.”
I added, “He was afraid they’d have to lance it.”
Lynne scrunched up her face, “Ow.”
She said, “We should go home now.”
A caregiver unlocked the door for us. I said, “Oh look, here’s your Mother’s Day card from your boys. Let me read what they wrote.” She stood still. I read one note, “Well, you did well on that one.” She laughed. “Let’s check the next one. Well, you did real well on that one too.” Let’s see how well you did on this one.” She listened with a big smile.
“Well, you did well on that one too. Three out of three.” She laughed.
“How does it feel to be a mother of three boys who love you so much?”
She glowed. “It’s time to go,” she said. We walked back into the dining room and said she wanted to go home. I told a caregiver Lynne wanted to go to her room. She shook her head, “She goes in and comes right back out.”
She walked with me to the elevator. “I love you so much,” she said. We hugged. She grabbed my hand tighter and tighter as she walked away. “Lynne, let go, I have to leave.”
“Oh, that’s right.” She let go and slowly walked toward the dining room.
Like everybody, we have good days and bad days.

Mother’s Day So Nice

Lynne, Dad, Henrik, Christoph, Simon

The boys planned Mother’s Day and wrote her a card. Dad freshened up his apartment. Clemens ordered Thai food and boiled the meals. He baked a carrot cake, Lynne’s favorite. Lynne ate every serving. And said over and over, This is so nice. #Alzheimers #Alzwa #alzauthors

Ordinary Happy Times

Lynne’s friend mailed me a letter for Lynne. She often does. I gave it to her as she ate. She held it with a smile. I opened it for her. She was pleased. I pulled it out of the envelope. She opened it & was excited to see Happy Mother’s Day. #Alzheimers #Alzwa #alzauthors

Master Class Chatterer

A friend since college grabbed Lynne’s arm and talked and laughed with her for an hour. She shares by talking with Lynne far better than I can, like how they danced in College and laughed at her funny looking dog, Daisy. I just followed along. #Alzheimers #Alzwa #alzauthors

A Pedometer Record

18,635 steps first 24-hours

We bought a pedometer to count Lynne’s steps listening to music, often arm in arm, inside or outside. We clipped one to her waistband with her cell phone in it. She walked 13,408 steps the first day, 18,635 after 24-hours. She welcomes arms. #Alzheimers #Alzwa #alzauthors

The Hugging Round

The hugging round with the boys comes late in the day after walking and hearing them talk about colleges, job options, gap years, old passports, Mother’s Day. Fatigue stirs Lynne to her feet for the hugging round. She looked good, they say. #Alzheimers #Alzwa # #alzauthors

Boys and Lynne Walking

fun activities

Lynne’s three sons walked her outside for the first time in over a year. She obviously enjoyed it. It took a while to convince her. We were told she didn’t want to come down from her room. So we asked if her oldest could go up to see her. When she saw him she was ready to come down. Simple pleasures, heartfelt memories.

Care for Dad


I received a care call after dinner last night from Luna, the Director of Operations at Lynne’s assisted living. She says, and most staff say, caring for a family caregiver is as important as caring for each of her 120+ residents. She wanted me to understand Lynne is much improved since our drive her last Monday. She ate her full meal. She is agreeable, not aggressive; calm, not anxious. She sleeps better. Her feet don’t hurt. She likes her shoes. She helps residents but worries they don’t respond. Luna said, “I say, ‘Lynne, you have to remember, they have dementia.’ Lynne says OK and continues to help. It’s a marked change.”

The Boys and I saw similar responses an hour earlier in Outdoor Living. She welcomed me with a strong hug. She giggled to see them, talked, remembered, laughed. She wants the Boys to visit her room. The boys want to. We were encouraged.

She was excited about a thank you card, but when she read the cover that said ‘Cougars,’ she said, “She’s from Washington State.” When we left had to remind it was her card.

She remembered a South Eugene high school friend who contacted me. The friend had a riotous time with Lynne at the last reunion and plans to connect with her. The Boys reminisced with her because she took them with her for one of their driving trips. 

Staff are eliminating tranquilizers to get a new baseline and phasing in new ones, but Luna didn’t have the details. She promised information about her medications when she went back to work.

Let’s hope she is comfortable in the baseline and any replacement medications help her felicity. We know Luna’s care call helped my felicity.

Felicity and Separation

Caregiving Caregiver Loneliness Caregiver Fear

When we went for our drive Monday she hesitantly let me buckle her in. I gave her a blue thank you card from a friend for the surprise birthday visit Lynne and I gave him. She said, “Oh look, he remembered my name.”
I inserted it in a book of poems I bought her by Mary Oliver titled, Felicity, the quality of being happy.
“Who gave me this, Nancy?”
I don’t think she remembers I’m Dad when she sees me. She doesn’t call me Dad. She’s losing track faster than I expected, even though she has regularly dropped rapidly followed by stable periods. This feels like the last stage of recognizing people. I knew it was coming, but I am surprised how much I’m afraid. Karen and I cared for her until I lost her, forcing me into a primary focus on Lynne and a memoir to adapt to being a widower. I don’t know what I’ll do when she loses all recognition in steeper and steeper declines. Where do I find my purpose? Is writing her memoir enough? Caregiving is getting harder.
At least we have car trips with a vanilla shake at Dick’s Burgers. I buckled her back into the front seat and set the shake on the roof above my back seat before I climbed in. When I remembered the shake on the roof I hoped it was still on the roof with my smoothly slow driving. It was gone and I needed to run through the car wash. I reminded myself to put drinks on the hood of the car, instead of the roof, so I’ll see it when I get behind the steering wheel. It’s worked for decades. Am I losing it? I recovered by stopping at Starbuck’s in Leschi for her favorite lemonade and iced black tea. She never missed her shake. IBesides, if she’d remembered it we’d have been fine. Karen would have reminded me.
My drive was designed to place her in a sanctuary. I was mostly silent. She agreed to a playlist of her birthday songs and sang their lyrics. I let her rest, relax. My purpose is to stream experiences into her psyche she rarely feels in assisted living. When I drive she moves and sways. She effortlessly experiences cherry blossoms, yellow daffodils, an Orthodox church, playing fields, playground equipment, Montlake elementary, Lake Washington Drive, arboretum, children, horns, jack hammers, air brakes, dogs, cats, a dog kennel, the Coyote shop, the smell of coffee and ripples on Lake Washington glistening with sunshine under a blue sky over snow-capped mountains.
The streaming experience is guiding her mind instead of me, staff, schedules, medications, meals. She is connected with me. She fingered the blue thank you card and rotated Felicity from front to back. She opened it. “That’s so nice of Nancy. I’m going to read this.”
Speaking is easy, flawless. “That playfield is deep. The arboretum is beautiful. Look at the dog. Oh, there’s the dog kennel. That Cayote shop is so good.”
At one point I reached for something near the gear shift and she slapped my hand with the blue thank you. Why? What was that? Was she warding off my hand? I know she’s been afraid and anxious, so was this an impulse to ward off somebody touching her? On our last hug she gave me a loose shoulder hug. Is she fearing an embrace because she is losing recognition of people?
My purpose of the trips iis to give a sanctuary without the necessary demands of institutional care where she is denied, corrected, and redirected. In her sanctuary she did not ponder answers to questionanswering. She was not confused, anxious, lost, afraid, wandering, confronted, threatened, unsteady, alone, hiding, escaping, shouting, angry, aggressive, hopeless, useless, hungry, thirsty, tired, worrying, hurting, stumbling, or falling.
Creating her sanctuary makes me lonely. I don’t tell jokes to hear her laugh, or praise her boys to get her joyous. Talking pressures me and and it’s not reaching her as meaningfully. I have become a bystander, a monitor. I know loneliness is normal in Seattle’s dreary winters, but I haven’t been lonely. I shared my feelings of loneliness with my son on his visit, and my youngest daughter on the phone. She was lonely because she couldn’t visit. I shared my feelings with three care groups, which is all I could work in. They all helped me.
I had an epiphany: visit my daughter in Chico, California. She has been isolated, I have been vaccinated, we are lonely. She isexcited. I’m excited. It lifted my loneliness from facing another weekend alone watching players dribble in every basketball game I could record. I’ll hug my daughter, her husband, my dog and her dog. We’ll walk in 70-degree sunshine along a river running through the forest in Chico. We’ll talk about our writing. I’ll work on her patio. I feel guilty because I’m leaving Lynne in assisted living. I doubt I’ll tell Lynne I’m visiting her sister. She won’t miss me. We can talk by phone. I feel guilty about keeping it a secret. Telling her would make her sad. I worry she’ll discover I’m there. She loves to visit her sister.
When I dropped her off, I turned to wrap her in my arms, but she resisted as if I was smothering her. She turned to ask the concierge for help with Marilyn. He reached out to touch her hand, “OK, say it again Lynne, because I don’t know anyone named Marilyn.”
She held Felicity in her other hand.

Still Stumbling over Footcare


New slip on shoes and color matching socks

We are still stumbling forward on her footcare. Last Thursday with her sons Lynne told us her right foot hurt. I took her boot off. When I walked her inside she had put her boot on and zipped it up. She’s persistent and inconsistent. I decided to replace the boots.

Lynne wore socks in her Velcro shoes and brought her boots to the shoe store. When we took her shoes and socks off, the heels and ankles on both feet were bleeding.

The store owner stopped the bleeding and put band aids on both heels and ankles of her feet. The owner refunded the boots because they were inflexible for the foot size she wears. We bought new socks for her black shoes.

I was furious about the bleeding and wrote an email that her foot care is unacceptable.

Pam said bleeding was completely unacceptable. Keith said, “Pops, this isn’t Aegis fault. New shoes and no socks make no sense. Of course, she is going to blister. Wearing socks just needs to be the new standard. She needs comfortable shoes and socks.”

Luna, operations manager, (not her real name) set up a family conference on foot care and medications. Luna acclimated us to the new world of Lynne’s moods. She gets frightened, anxious, aggressive, and angry. Once she gets angry, there is no talking her down. She will not stay alone in her room more than a few minutes. Staff calls to cheer her up with calls to me, friends or family work until she hangs up and reverts, which explains why I‘ve had fewer calls.

She walks constantly around the lobby where she can be observed, or where staff lead her to other areas such as Life’s Neighborhood, outside garden, and sixth floor outdoor patio. She says hello to people she meets. She won’t sit long enough to finish a dinner, so staff give her snacks between dinners. We’ll have to watch her weight. Luna warned us that their plan to eliminate her current medication for a baseline usually takes 30 days, and another 30 days to find a new level. Luna noticed she leans to the left when she walks, which may mean an inner ear infection. She’ll have nurses check on her.

Then Luna reviewed the condition of her feet and shoes. Lynne pulls off her shoes and socks and puts them on perhaps 30 times a day. They can get lost, so Luna says she has a black marker to write the name on the shoes. We need to replace those shoes every 6 months. Luna said the reason Lynne had blood on heels was because she had blisters from wearing the boots without socks for two days and then wearing them other times. The blisters ruptured on Friday when we took her to the shoe store.

Aegis staff, nurse and a podiatrist have checked the pain in Lynne’s foot. A nurse and the podiatrist used a technique of comfortably holding her feet while chatting until she’s distracted before pressing all toes, bones and soles. She didn’t wince either time. The X-Rays did not show any reason to cause pain.  

Pam and Luna recommended we buy slip on shoes for the summer, so Pam ordered the ones she likes at the shoe store. Lynne liked the fit. She also liked how easily she slipped them on and off in the store. Afterward we drove around Lake Washington listening to Bruce Springsteen, which gave her time to take her new shoes on and off often. When we returned, the concierge suggested we put her names in all four shoes. His black marker did not work in her black shoes. So, he used a machine that printed stickers with her name. We pasted them on the leather and edges of the cushion with the hope the stickers will stay on as her shoes come on an off.

Caring for her distress is getting harder. Feeling her in distress is getting sadder. Doing the best we can do as a team makes it easier.

Stumbling Through Foot Care


Lynne’s Replaced Wardrobe

I confess I’ve stumbled through caregiving for footcare for Lynne, my daughter, before I arrived at the present plan. Mt story should help anyone avoid my mistakes who is responsible for care for a loved one in assisted living.

My mistakes stemmed from my trivial footcare pain compared with the problems suffered by my wife Karen, Lynne, her brother and sister. I’ve never used special inserts. Karen managed Lynne’s foot care, so after Karen died in September 2019, I bought her shoes without understanding her particular problems. I only had two problems with my feet and solved them by reading a book.
A stinging pain at the tip of my longer toes and littlest toes drove me to a couple of friends who went pain free after reading Paine Free by Pete Egoscue. a nationally renowned physiologist and sports injury consultant with 25 clinical locations nationally with hundreds of therapists https://www.egoscue.com/what-is-egoscue/history/ His approach is a series of gentle exercises and carefully constructed stretches to ease muscle pain.
I’ve used the exercises in the book to relieve toe pain, back pain and shin splints. The toe pain disappeared as he said it would by walking barefoot around the house made possible by Karen’s spotless housecleaning. I bought loose-fitting lamb’s wool slippers, looser socks and footwear.
I had shin splints when I moved into my apartment after Karen died. Egoscue recommends exercises and Pam told me I walked too long in the same hiking boots (well over 1,000 miles).

History with Lynne since September 2019: Obligated by compassion and undeterred by ignorance, I bought Lynne tennis shoes from an athletic foot store so she and I could walk around Green Lake and participate in CrossFit training. She could tie the shoelaces, untie them, retie them, and knot them. Staff advised me to buy new shoes with expandable laces she would slip on and off her feet. Those are the blue and white tennis shoes she wore to CrossFit and Aegis exercises for more than a year, which I probably should have replaced.
Last summer Lynne said she’d like flip flops and staff recommended them for more comfortable summer shoes. I ordered flip flops that advertised a softer cushion. She liked them. Her feet didn’t hurt.
Soon her feet hurt in one set of clogs but not in another. The brands were different, so I bought a pair of the comfortable brand with the identical size and a different color. A few months later Lynne said the clogs hurt her feet.
This fall and winter Lynne complained her left toe hurt. Nurses pressed on all parts of her feet but she did not consistently wince at any spot. A podiatrist visited on February 22nd after which caregivers said the podiatrist treated the bottom of Lynne’s feet. Her report identified the patient problem was painful nails and calluses. She debrided the nails and calluses using aseptic technique without incident and all Lynne’s concerns and questions were addressed.
After that visit Lynne complained to staff and me that someone hurt her. Someone cut her. Her foot hurt. She cried a lot, stopped for a while and cried again. I decided I had to prepare recommendations for a better foot care plan to stop recurring problems with Lynne’s foot pain. I asked for reports, contacted my family and scheduled an appointment with her primary care physician (PCP). An addendum to the podiatrist’s report indicated that she would order X-rays of her foot and noted that the patient may benefit from custom orthotics. The X-Rays showed no evidence of fracture, bone lesion, erosion, arthrosis, or injury.
Simultaneously with her foot pain, staff were increasingly concerned by Lynne’s more aggressive, sorrowful, angry, anxious temperament they had not seen before, most likely a result of medications she was given to increase her sleep and relieve her anxiety. Plans were made to discontinue the new medications to establish a new baseline for her and have her evaluated for new medications.
Pam and Keith supported a better plan for foot care. They have arch problems with their feet and said Lynne has arches that need support. They disagreed over whether she had special inserts for her feet before assisted living. Her sons and ex-husband don’t agree whether she had special inserts for her shoes. Lynne doesn’t remember. It was time to start anew.

Lynne and I visited her PCP who had referred her to a surgeon for foot repair years before. He said she had high arches and should see “podiatry and probably inserts would help and update her shoes.” He said her blue tennis shoes and flip flops were inappropriate. Why didn’t I know that?

Two days after that visit the podiatrist at Aegis who had debrided Lynne’s calluses called me. She, or possibly another podiatrist, had examined her feet in the last year. She said she could re-examine Lynne’s feet on the next Friday, to see if she should order custom orthotics. I asked why she hadn’t made that examination earlier? As I remember her answer, she said she was focusing on the pain in her foot.

A friend in our support group with Aegis has had foot problems for years. Her doctor told her to go to the owner of a comfort shoes retail store in the Capital Hill health district. She told the doctor she needed a podiatrist. The doctor repeated his recommendation to go to the owner first, because he would modify inserts and order special orthotics if needed. If that didn’t work he would refer her to a podiatrist. The owner modified inserts in her shoes without ordering special inserts and she’s bought new ones every six months for years.

Before I scheduled a podiatrist referred by Lynne’s PCP, I wanted to get the opinion of owner of the comfort shoes store. owner. He examined her feet carefully as he grilled me on the circumstances of her footcare.
• The blue tennis shoes and flip flops were not appropriate for her feet. Why didn’t I know that?
• Lynne takes her shoes and socks off and puts them on constantly. She loses socks and shoes.
• Special inserts for shoes would mean rotating staff would be inserting and removing them when she changes shoes.
• Special inserts may not work consistently in all the shoes she has.
• Socks may or may complicate her comfort. A lot of people prefer no socks, and Lynne seemed ambivalent about it. She didn’t wear socks in her clogs. Nevertheless, the owner recommended she wear socks to see if they help because socks can be managed.
• Lynne, Pam and Keith complained that Lynne’s 3 end toes are separating away from the big toe. Karen had the same problem with her feet. The owner said that was because Lynne’s arches slighted tipped her feet to the outside. He could glue a ridge to the outside of the insert in the shoe that would balance her feet better.
• He increased the cushion in the shoe inserts to absorb the pressure from her high arches.
• The owner and Lynne liked the black shoes we ordered, and he modified the inserts in the shoe, so they don’t have to be changed.
• She wears boots for rain and for dress, so he fitted her for half-calf high boots that are waterproof up to the webbing above her sole. He did not have to modify that boot’s insert. She wore them back to Aegis, where I requested she wear those when she wants to dress up or walk outside in rainy weather.
• I requested staff give me all the footwear Lynne has so they can establish a baseline of her comfort in the new black shoes and boots. They liked that because fewer is better. Lynne’s foorwear wardrobe had two sets of boots (one boot was missing but she says she knows who took it and will get it back), two sets of flip flops, two sets of slippers and her blue tennis shoes. I will save her footwear for a while, but I can’t justify why I saving them.
• Since I was wary of Lynne wearing socks and shoes that are too tight, I recommended she not wear socks with her new shoes. I made no recommendation about walking barefoot.

This foot care plan was a work in progress so I recommended we evaluate it every six months if nothing else requires it.
Two days later the night nurse required a re-evaluation. Lynne had some redness on the heel of one foot, so she recommended Lynne wear socks.

I confessed the next morning. “The no socks was my idea. The owner of the shoe store and every reasonable person in the world probably disagreed, so I was wrong. About her feet, again. Please put socks on her feet and keep correcting me. I can’t believe I hurt her feet again.”
I got several replies of encouragement, but the most interesting were from her sister and her brother.

Pam: “You got the idea from me, too. She typically hates wearing socks. So, you don’t get all the blame for this one. 🙂 Sorry from me, too.

Keith: “Lynne notoriously never wore socks, I would say when she was wearing clogs, ‘How do you do that? She said socks made her feet feel icky.’ Love you.”

We’re So Blessed

fun activities

A Caregiver Reading Lynne’s Poem

Lynne joined me for our visit in a private room. She wore black and gray cotton sweaters, summer red and yellow capri pants and flip flops on bare feet. We had 11 inches of snow outside her window. She said, “There was so much snow. … You couldn’t go.”
I had decided to amicably encourage her by quietly listening to every word, if she was in a good mood. I want to know her thoughts when she spends hours alone, or absorbed in thought around other people, and when staff doesn’t need to call me because she’s anxious.
Quiet smiles amid slurps of our strawberry and vanilla milkshakes.
“They’re going to get someone new. … Not yet.”
She looks at the floor. “We had it all. We have family. We’re together.”
I nodded, “We are.”
She squeezed her hands. “And they’re so good. … We’re so lucky. … We’re so blessed.”
She sat back. “That’s why they say, ‘I’m uppity’…. Because we have it all.”
We opened her 55th birthday album of family photographs. She paged through it, stopping with a laugh and a point. “They were so little. … I loved that shirt.”
She’d follow a thought in silence until she noticed the album and flipped another page. “There she is.”
I read her the poem, I’m From Mom, which she wrote for Karen on Mother’s Day in our fiftieth year of marriage. She laughed, repeating phrases.
After half-an-hour, she leaned forward. “I think I should probably get back. I don ‘t want to overstay. Or they’ll think I’m uppity.”
We showed her poem to the concierge, who read it along with her. “It sounds like Mary Oliver,” he said.
He made a copy for the Activities Director, who promised he’d read it in poetry class the next day.
I slipped out.

Peers in Our Humanity

Lynne’s Teaching

From Dad: I watched Lynne’s blue eyes and inviting smile allure a girl child to share again and again with an adoring stranger who absorbed every word.

Lynne’s friend Ellen is a speech pathologist who worked with special education students. Ellen saw Lynne engage with kids on a playground.  “She had an incredible knack for connecting with kids. Open, honesty in her approach, just unwavering for a kid. She had a knack for saying true things, not greater than it is and not less than it is.”

Ellen thought to herself: “Why don’t we have her as a teacher with us?”

Years later Ellen helped Lynne’s students in special education. “She was a great experience for anybody, especially kids with behavior challenges. She was drawn to them, worked with them, and made a difference with them. She had a highly unusual authenticity, connected.  She didn’t have that hierarchical tone. Consistently with kid after kid she convinced them, ‘We are peers in our humanity.’”

Visits and Guilt


Lynne’s three boys, mostly men now, over 18 and 6’ 3” tall who wrap me in their arms, visit Lynne an hour every Thursday when they are together between fulltime schooling and work. Lynne squeals with joy when they sit down in the outdoor living room at Aegis.
They share and laugh for an hour over memories and current stories. Rides on her scooters. Scary rides at theme parks that stopped at the top. Cars they liked to drive or were afraid to drive. Lynne burning up her Mom’s car engine in high school. Lynne pumping up her ballplayers by urging them to visualize themselves making a great play.
It worked, one said.
The older twins describe a neighborhood playmate who towers over them now. One remembered the playmate’s mom, a friend of Lynne’s, would criticize him as if he was her kid. Lynne telling them to write down goals. They never did it but they agreed research shows it works better if you write them.
Agreeing, You could talk to her about anything, everything.
It’s taken a long time for me to get her brotherhood into a regular schedule on topics they would enjoy. At first irregular visits were awkward with uncomfortable silences. I reminded them dementia wipes out short term memory and language skills first, leaving her able to recall long-term memories. Plus, she is interested in whatever interests them. They keep her animated. They look forward to it, arriving early the last two visits.
I worry they will forget. I remind them. I worry the boys will feel guilty they didn’t visit more, like I feel guilty about my mom when she had Alzheimer’s. I worry once a week is not enough. Lynne said recently, They don’t have to do that. They’re so busy.
The whole family worried as the boys’ school performances deteriorated during their shock over her diagnosis. The twins left college to come back together to support each other to support her.
She frequently remembers them when people ask her about them, they are all doing exceptionally well. Now she falters to find words to name them even as she shakes her smiling face in bliss.
I worry I should do more. I should visit outside more. I should call her on video chat more. She rarely answers because staff says she stays in the shared living area. I reason if she’s not calling me, she’s happy with some other activity. I hear her ringtone on my cell which usually means she or staff want me to cheer her up. Sometimes I ignore it because I can’t find the courage to help her. I feel guilty. I tell myself about all my other responsibilities as a widower, writer, investor, father, grandfather, and sharing her story with friends. I have to exercise and stay active for my mental healh.
But I still feel guilty when I remember I visited Mom less and less as her awareness drained out of her. I might have done more.
For now her boys love their visits, and are busy doing well, which is Lynne’s ever accessible joy. And if they feel guilty in the future, I hope they can forgive themselves. I can ususally forgive myself, but there is always the residue of doubt about what I might have done.

Happy on a Simple Sunny Drive

fun activities

Lynne settled into my new red Mazda CX-30 for a sunny afternoon drive through her old neighborhood listening to songs from her playlist of favorites. We drove past the Greek Orthodox church.
I asked, “Did you ever go there?”
“No, it would feel like I was intruding.”
We drove down the alley by her house where she raised her newborn sons. Blossoms still towered over her tall fence. She recognized the ballpark and Montlake elementary and the playground equipment where I played tag with her sons.
The late afternoon sunlight blinded us as we drove past houseboats, prompting me to tell her a writer in my class is working on a memoir of living on a houseboat for 20 years. We stopped at a waterfront park to see squawking ducks and a fearless pigeon that posed for a photo with Lynne. A daddy chased his laughing children as landscapers said they were planting 3,000 plants, so we thanked them. Kayakers on the water reminded us when Mom loved a lake where our camper trailer perched on a bank above a muddy shore.
Lynne laughed. “The Mighty Muck Monster.”
That was our kids’ favorite of many stories I told around the campfire. The Mighty Muck Monster rose out of the muck, so I warned them to stay away from the shoreline muck day or night. I needed an ending, and it came to me from somewhere.
“It was afraid of nothing,” I paused. “Except, for one thing.”
“What was that,” they asked?
I leaned forward for my hushed answer with complete conviction, “A mad mommy.”
Oh, yes, they could imagine their mad mommy protecting them from the Mighty Muck Monster.
We drove around Lake Union for an hour to arrive in line for shakes at Dick’s Burgers in the gloaming. We were cold by the time we got back to the car. We headed home as The Judds sang their song, Love is Alive. She mumbled something, so I patted her knee and asked, “A little cold?”
“No, I’m happy.”
That thrilled me. It awakened me. I was happy. For the most part we were as comfortable a couple as Karen and I would have been — there were exceptions of course, like when Lynne tried to take my strawberry shake after she downed her vanilla shake.
I constantly search for different ways to make her happy. At times it seems simple, and at other times, hopeless. Maybe I make it too complicated.

Covid at Lynne’s Facility

One (1) staff member at Lynne’s assisted living facility  tested positive for COVID who was fully vaccinated and had received their booster shot. The staff member was appropriately health screened prior to each shift. Tuesday, 12/21, Aegis will complete molecular testing on every resident and staff member. They will inform everyone when results are available.

My search of the Internet says it takes days and depends on the lab schedules.