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

Meatloaves

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.