Dad in Live Interview

JOIN US FOR OUR UPCOMING LIVETALKS
A Daughter’s Alzheimer’s Diagnosis
Being Patient.com will speak with James Russell about his daughter Lynne’s early-onset Alzheimer’s. As part of our LiveTalk series, James will share the ways Alzheimer’s has affected their family, and his gratitude for all those who have supported them along the way.
RESERVE YOUR SEAT: Thursday, May 18th at 2:00 p.m. PT / 5:00 p.m. ET

Being Patient is the leading online community for Alzheimer’s & dementia patients & caregivers. https://www.beingpatient.com/

Adding Weight to ThinLynne

On April 22nd the Hospice nurse qualified Lynne for 60 more days of Hospice, primarily because her weight continued to decline from 130 pounds to 120. She steadily lost the vigorous active muscle she had as Alzheimer’s inevitably drained her strength into fragility. Otherwise, she had minimal pain with moderate moods and no seizures.

Her weight loss left me helpless. I had fed off her energy whenever I was around her. Now I fed off her fear she would lose her balance as she had in several several falls. She was nervous about holding onto the arms of a chair to sit in it. I did not like to take photos of her because she looked like she was looked frail and fearful.

Lynne’s weight also threatened Lynne’s agreement to donate her remains to the UW Willed Body Program and the Alzheimer’s Disease Research Center for Alzheimer’s research, instructional courses, organ donations, and cellular research. She was proud of her generous contribution. However, a week earlier a representative of the Willed Body program informed me Lynne should weigh at least 100 pounds to be accepted into the program. I shuddered at the idea of them rejecting her and walking away. Their possible rejection meant we had to have a disappointing and unpleasant backup plan. More importantly, one hundred pounds loomed like a pitiless pit. The Hospice nurse was not aware of that limitation, but she was already upset with the weight loss. Lynne needed more strength and energy. Vibrancy would help her moods. The Hospice nurse had written an order to boost her calorie and protein intake three times a day. She would follow up to see if it was done. She thought caregivers had to record boosters on the MedTech’s daily report. I was thrilled. We could manage her weight instead of fearing she would totter on the edge of that pit.

On Monday the 25th I went up on Lynne’s floor when she was sleeping. I explained to the MedTech and a caregiver the importance of the nurses order to give her boosters to stabilize her weight, give her more energy and avoid 100 pounds. They were unaware of the nurse’s order and had not given Lynne boosters. I asked if they recorded boosters. The MedTech was new and not sure about recording boosters. The night nurse said they had not received an order.

The MedTech stepped back from her computer and looked at us. “I think they should give her more food anyway. She is always hungry and eats everything we give her.”

“Really,” I asked in surprise? I looked at the caregiver.

“I think she should get more food also.”

I turned to the night nurse. “How much additional food could you give her if she is always hungry?”

He shook his head in amazement. “I couldn’t give her additional food without talking to the Hospice nurse first. But I’ll look for the order and talk to her tomorrow.”

I left a message for the Hospice nurse. First thing in the morning the Aegis Medical Director waved me over. “We got the order today and sent it to the pharmacy for delivery. We’ll give it to her every day and record it. She got it today already.” The nurse and the floor supervisor said they would also give Lynne snacks when she appeared hungry.

Four days later Lynne stood in the hall looking at the wall until I called out. She turned unsteadily and uttered an “Oh,” with a smile pushing up her cheeks to chase away the sorrow as she spread her arms out to hug me. Her hug was so tight she almost tipped me over backwards. She sobbed and kissed my lips through my Covid mask.

I whispered, “It’s OK, I’m here now. Want to eat some frozen yogurt?” I wanted her to rest. She held my hand as we walked to a table in the memory care dining room. A young, spritely caregiver asked if we would like tapioca or yogurt.

“May she have both?” I wanted to get as many calories in her as possible.

“Sure. I’ll get you a spoon.”

I wanted to know if caregivers knew the boosters were delivered to the floor and whether Lynne had gotten them. “Did Lynne get her three boosters today?”

The spritely one said, “I didn’t give her one since I came up.”

The young, mobile MedTech stood at his computer on the medical cart. “I did not give her one either, but I’ll check.” He flew his fingers over the keyboard.

I wanted to learn more about what they knew. “Did the boosters get delivered?”

“Oh yes.”

“I’d like to see one. I want to know how many calories they have.” She opened the medicine refrigerator and gave me one. 250 calories.

The MedTech stared at his screen. “Yes, she was given three boosters today.”

I flexed my arms and chest muscles in a silent celebratory, ‘Yes!”

I spoon fed Lynne in between the times she gazed across the room ruminating on unknown thoughts, occasionally punctuating them with fist pumps. Other times she would close her eyes and rest her head rest on the back of the chair. She ate all 125 calories from Swiss tapioca pudding and 70 calories from Creamy Yogurt. We had boosted her intake about 1,000 calories. Success. I felt we might have the power to control her weight loss.

In a foolhardy flash of euphoria, I asked her, “Am I still the greatest dad in the world?” Long ago she had given me a t-shirt that said, “Best dad in the galaxy.” At Aegis she had told me I was the greatest dad in the world. She had told staff. Staff had told me she said it. They told me I was. But I had not heard it for a while. And I did not feel I was the best dad in the world Lynne after I had accepted her grave weight loss. I needed her assurance.

Lynne answered, “Yep,” with a firm nod of her head, emphatically emphasizing her feelings with an indecipherable exclamation while pointing upward with her left hand. The certainty of her sweet “Yep” surged through my ears to choke up my throat, swell my chest and send oxygen to warm my heart. She rekindled my confidence in Dad’s care for her. She convinced me, not with the sweetness of her certainty, but with the swiftness.

Podcast about Lynne’s Care

I hope you will be interested in an interview with Jim Russell for a Podcast about all the care Lynne receives. The Podcast is a production of the University of California Irvine Institute for Memory Impairments and Neurological Disorders (UCI MIND). They are the University’s center for aging and dementia research, with our faculty seeking to understand the causes leading to neurological disorders such as Alzheimer’s disease. They had thoughtful questions added information for me. I hope you enjoy it.

https://www.buzzsprout.com/1589794/10294312-caring-for-a-child-with-early-onset-alzheimer-s-disease-with-jim-russell

Memories from Miles Away

Even though Susan lives thousands of miles from Lynne, she shared personal stories deep from her heart as a gift for Lynne. I shared the stories with Lynne and her boys, wondering how much Lynne would remember in her dimming light. She remembered Susan and so did the boys. We caregivers benefitted from those stories more than I expected. I have edited the three stories for brevity and clarity for you readers. After the stories I’ll summarize what they meant to us.

Lynne’s Office.  Early days working at Microsoft as recruiters, Lynne and I took an extra hour at our desks after the frenzy of candidates had left for the day to celebrate a hire or commiserate a no-hire. I would find myself walking to Lynne’s dark office with only her desk lamp on. It looked really calm in there. Her desk was always cleaner than mine. She was surely on top of it all. I wanted to be with her in her office in the soft glow of calm and confidence. She always greeted me with a smile for a quick chat that sometimes turned into an exceedingly long chat. We mostly laughed and talked about the “big nerds” we loved and how overwhelmed we were.  That shared experience proved foundational over 30-plus years. Somehow recently, I remembered to remember that gift, her gift, just down the hall from me day after long day.

Baby Roses. Early in 1997 Lynne shared she was pregnant with Henrik and Simon. IShe was in the very early days when doctors tell you not to tell anyone. She told me in the strictest confidence. I was overjoyed for her and Clemens. Lynne was beaming with happiness. It was contagious. I bought them flowers, baby roses to be exact, because Lynne always had a batch of fresh flowers from her garden, so another fresh batch would not indicate any celebration. I remember being proud I found a way to celebrate with her while not projecting her secret. It was our “inside joke.” What strikes me today is I didn’t care if my gift was premature. Her smile when I delivered the flowers said Lynne was delighted someone could simply join her in her joy. Not overthink it. Just enjoy that moment.

Saving a Stranger Dog. One day Lynn and I came across a large shepherd mix awake but not moving in the middle of a dirt road. We were on a hike, a girls getaway. Our heart sank when we realized this dog would likely die. Lynne got her car and together we loaded it into the back of the van. It had hundreds of ticks in its skin. I asked Lynne if she wanted a tick infested dog in her car. She looked at me and said no problem. The shelter tried to find the rightful owner. A few days later I called Lynne and much to my surprise, she was seriously considering adopting this dog, from a rural existence with so many ticks. I thought, Of course Lynne wanted this dog. This was one of those times that as Lynne’s best friend , I forcefully shared my concerns given her full house with kids, dogs, and cats. She was frustrated, maybe at me, I don’t know. I don’t recall speaking of that dog again. It never moved in with her.

I’m not sure Lynne remembered those stories, so it was a blessing for her to to hear them again. The boys enjoyed the memory of Lynne’s friendship with Susan through a lasting relationship, secret pregnancy celebration, and protecting Lynne’s family from self-inflicted trouble due to her overwhelming compassion. Those memories now live with her boys. I have vowed to share those stories with the boys. I don’t have those stories, friends do. And by sharing them in a network of sharing and posting, friends can see ways to care for all of us by sharing memorable stories with Lynne.

Lynne’s Crowded Table

The Sweet Savor of a Garden
Lynne’s Garden
Lynne When the Day is Done

Sunday Nancy and their friends drove Lynne through the red, white, and pink cherry blossoms in the Arboretum. She got in and out of the car more easily since she has gone for more rides. She talked. She expressed interest in going back to the Volunteer Park Conservatory. They walked through the green ferns and red flowers crowding the path with the sweet savor of nature compared to the sterile walls of Life’ Neighborhood.

Sunday Edith sent a song called Crowded Table written and performed by Brandi Carlile and her group the Highwomen. Edith was listening to music as rode her bike at the base of the Three Sister’s Mountains in central Oregon. “The lyrics remind me of the friendship shared and the journey with Lynne. That’s all I want,” thought Edith, “a crowded table. I was sobbing so hard I had to pull my bike over.” She sent the title of the song and lyrics to their friends and me hoping Lynne could hear it.

Our Thin Strong Lynne

The boys take her for drives daily now to get ice cream according to the concierge. They remark about presence is memorable compared to frail octogenarians surrounding Lynne in the lobby. Lynne’s thin body strengthens with the movement, hugs and talks with her boys.

She is blossoming with it. Sunday night she greeted me with a smile and reached out. She said, “I am happy.”

I choked up instead of saying something like, of course, or wonderful. Aegis activities and friends visiting fill me with deep appreciation compared to my solo activities. They’re more creative and the multiple bodies make it more comfortable for Lynne.

Nancy sent us all a cheer. Great Job Team (Lynne’s crowded table)!

Monday morning my eyes had tears when I read Crowded Table lyrics and pictured Edith sobbing on the side of the road. I downloaded it to Lynne’s Pandora song list. Crowded Table was the first song Lynne heard Monday when I put on her headphones.

Lyrics for Crowded Table by Brandi Carlie and the HIghwomen

You can hold my hand
When you need to let go
I can be your mountain
When you're feeling valley-low
I can be your streetlight
Showing you the way home
You can hold my hand
When you need to let go

Yeah, I want a house with a crowded table
And a place by the fire for everyone
Let us take on the world while we're young and able
And bring us back together when the day is done.

If we want a garden
We're gonna have to sow the seed
Plant a little happiness
Let the roots run deep
If it's love that we give
Then it's love that we reap
If we want a garden
We're gonna have to sow the seed

Yeah I want a house with a crowded table
And a place by the fire for everyone
Let us take on the world while we're young and able
And bring us back together when the day is done

The door is always open
Your picture's on my wall
Everyone's a little broken
And everyone belongs
Yeah, everyone belongs

I want a house with a crowded table
And a place by the fire for everyone
Let us take on the world while we're young and able
And bring us back together when the day is done
And bring us back together when the day is done

Alzheimer’s Walk Reunion

Jim Russell will be on nationwide video presentation to promote the Alzheimer’s Walk in the Fall. I will be on the presentation and invite you to join us, or record it for later viewing. Sign up below to register or record.  Thanks for all the support you give to Alzheimer’s Association

Save the Date: 2022 Walk Video Reunion on April 6   10: AM PDT  and at 2.00 PM PDT

Join Alzheimer’s Association® volunteers, team captains, and participants from across the nation who are excited to be part of the Alzheimer’s Association Walk to End Alzheimer’s®! Hear their inspiring and motivating stories while learning more about this year’s Walk and how the Alzheimer’s Association is continuing to provide crucial programs and services to all those affected by Alzheimer’s disease and other dementia.

RSVP NOW

Can’t make the reunion? Fill out the RSVP form and we’ll send you a recording. We look forward to kicking things off with you! Together, we can end Alzheimer’s disease.

Sunday Funday Girlfriend Outing

by Nancy Hilpert

Two best friends of Lynne, Nancy & LynnR, transformed her from rigid advanced Alzheimer’s into lively outdoor activity. Lynne’s response thrilled me, and humbled me, because they enlivened her more than I believed could happen. Nancy’s story tells us how.
My friend LynnR and I had texted ahead on Saturday to coordinate our plan for today, and were expecting the morning fog to clear into a Sunny day by 1PM, and so we timed our visit with the sunshine. We talked about driving Lynne out to Dairy Queen (one of our favorite work haunts from the good old days in Redmond) or maybe to the Capitol Hill Farmers Market that she always loved so much. The day wasn’t looking very promising as far as sunshine goes until I arrived at Aegis, running a tad late, but just as I arrived the clouds started parting and the sun was burning through. LynnR had gone in ahead and was bringing Lynne down from the Memory Care floor just as I entered the lobby. As the elevator doors opened and I saw it was them, I stepped forward to greet them, they both smiled, and I cherished that moment of being remembered by dear friends. I won’t take it for granted.

I had parked in the garage and it turns out this made it easier for Lynne to get into the car, taking the elevator down is easier then when we park on the street, since navigating over curbs is difficult for her now. Her eyesight is limited to straight ahead and she tends to keep her head lifted up and back, with her chin elevated into what I tease her is her ‘haughty bitch’ look–this always makes her laugh. But today with her head so high, she can’t see where she’s going, she can’t even see me. I make a “short-person” joke, since let’s just say LynnR and I are on the ‘petite’ side and our long legged Lynne is definitely ‘grande’, and ask her if she can look down more to see us. She giggles and agreeably says “I’m trying,” with a happy but slightly confused tone…she doesn’t understand exactly how to make it happen with her body. I asked her if I could help her move her head down, and she said, “sure” and so I held her head with my hands and tried to gently guide her head forward and down, to drop her chin a bit. She was able to do it, and I asked if it hurt and she said no. But after a few moments, her head had returned to its prior posture. Just one of the mysteries…

Lynne was talking about loving flowers and so we decided to stop by Volunteer Park which has at this moment in full bloom a hillside draped in with thousands of daffodils, yellow, white, cream, and combinations of all three colors, it’s just stunning. We got the car to a wide open area where LynnR could help Lynne get out–the getting-out goes slow but better than the getting-in back at the garage. She moves slowly and is cautious backing up and just moving in general, but sitting down into a car requires her to drop down behind into a seat she cannot see. It feels strange and a little scary to her, so LynnR and I work together to help her find her legs, and turn her body so she just needs to drop down sideways into the front seat, then we’ll lift her legs and swing her body around to face forward, was the plan. Which we did accomplish, after much effort, and helping her move by touching her legs or whatever needed to move and reminding, lift this left leg, ok good, now lift the right, a small step. Ok, now, we’re turning around, as one of us guides her hips/legs and the other shoulders/torso.
In the park she loves the fresh air and the bird song, and she notices “Brrrr, it’s cold” when we’re in the shade and the breeze comes up, and she notices “this is nice,” “this is warm” when we walk in the sunny patches of field or sidewalk. We do show her some pretty bulbs in bloom but we can’t get her to the biggest stands where they cover an expanse of hundreds of feet, massive stands covering a hillside embankment. It’s too far for her to walk these days, and we fear she wouldn’t be able to see. But she loves being out in the fresh air and feeling the sunshine.

Her hearing is heightened –she notices the sound of the airline jets firing overhead as one passes thousands of feet above us and comments, “wow that’s loud” pointing upward at the sky. What sounds like a distant rumble to me is loud and jarring to Lynne’s ears. We notice this at other times: when a car passes over a grate which rattles loudly she jumps back, her shoulders clenching and her hands up around her ears. When I play music, Dolly, the first one I hit, Jolene, I realize isn’t really one of her faves as the first verse begins with it’s heavy guitar riff, and she says ‘Not that’ and so I say Islands in the Stream and it’s a definitive “Yes!” Then it’s I Will Always Love You, which gets us both singing and humming. That’s what we’re doing while we’re parked blocking someone’s drive on Summit Ave, waiting for LynnR to return from the Top Spot Donut shop with an iced coffee for Lynne and a selection of donuts to include an apple fritter, a maple bar, and a double chocolate donut. Lynne still knows what music she prefers and can tell me and I’m so grateful for this. She is connecting through the basic channels that remain for her, and we are learning to adapt. Re-tuning our receivers to be able to experience life on her bandwidth. She is still teaching us.

LynnR returns having secured all the goods. We’ve learned over these months of visiting that caffeine and sugary sweets are great for Lynne–she loves consuming them and we notice that they perk her up and so to speak ‘improve performance.’ And so we head over to the Capitol Hill Sunday Farmers Market to hang out in the adjacent park which is always full of young people and families and dogs and live music. I drop them off at the park and then find a parking spot a few blocks away. When I get back into the park I see them sitting on a bench in front of the fountain. From here we have a full view of all the happenings in the park and the people passing through on the promenade while we break pieces of the pastries into bite sized chunks and feed them to Lynne alternating between the three flavors and her iced coffee.

A local rock band is howling a low mellow grunge and the sun is really burning now and the sky is clear blue and there are birds chirping and calling and jumping in the bushes all around us and there are seagulls swimming overheard in the sky, chasing each other, and the water flowing in the fountain is making that pleasant white noise and the dogs are barking and the kids are laughing and the couples are wooing and the babies are napping and the hot guys are showing off their muscles w their long shorts and tank tops. And Lynne is noticing and commenting and pointing and getting excited and animated and stimulated by it all. “There’s a baby,” she says with that gooey never-met-a-baby-she-didn’t-love tone that is so hers. She’s watching the dogs play, pointing and laughing ,”look at them, so fast, he ran!, goof, hah, dogs” and smiling. The music is good and she sways and I jump up and dance a little and she’s swaying a bit to the beat and saying about the band “these guys are good” and “so Seattle, grunge” and we’re agreeing with her as we hum along to their happy-sad grungey-guitar heavy-bass tune feeling happy-sad to be in the sun now, knowing that it’s only here for short while before more cold and rain and dark.

All of a sudden Lynne is talking louder, her body is animated, she’s leaning toward the walkway and pointing. There is a new-old energy emanating. She’s shining, flashy, magnetized. I look to where she is pointing towards a pack of thirty something guys: fit, good looking, hard bodied, brown skinned, en forme, and yes, super hot. She is saying words and I am hearing excitement, attraction, flirtation. She’s being randy! We love it. I tease her, you think those guys are hot don’t you, and she laughs loudly and nods her head in agreement, “Oh yes!” and I say, they do look pretty strong and big and we joke around about her taste in ‘big guys’. More pass by and she points them out as well. LynnR notices she likes being around these younger people, and Lynne agrees. As we get up and walk toward the car, we pass near the band. Lynne is swaying a bit and humming the music. She is now walking much faster and with a surer footing than before. The caffeine and sugar are kicking in. We pass over the field where the dogs play, chasing balls and each other across the long expanse of grass. We pass by an area with swings and Lynne points interestedly, and I hear “Swings, love that, fun.” When I ask if she wants to go swing she says “why not” playfully and so we do. They have these fancy swings made of synthetic shells that have full bucket seats and a safety bar. Lynne was able to sit down into that with both of us encouraging and helping and then LynnR pushed her from behind Lynne swinging back and forth with her long legs never leaving the ground but her body getting the feeling of the wave motion and her legs got exercise as they bent and rose with the swing. She loved it. After a while we walked back to the car and this time, when LynnR opened the door and started to help position Lynne, she was able to just spin on her feet and tuck in like a pro and sit down with very little assistance.

After I dropped LynnR and Lynne back at her care home, I took a moment to resonate with how good it is to be with my friend Lynne and have the support and partnership of LynnR for these Sunday visits. And of feeling grateful for Lynne’s family and our whole friend network all who help in whatever ways they can. Then I called Jim to check in. I sent him a couple of photos from our outing. He answered and he updated me on his earlier time that day with Lynne. It was a hard morning. But as always he’s using what he sees to collect data, to see gaps and triggers in her care, to ideate solutions, ask for help, and to educate and communicate with the staff. He sounds a little tired and I know how hard he works to keep Lynne’s circumstances as good as possible while keeping her safe and well resourced. I’m glad to call him and share the fun and engagement we’ve had w/ our girlfriend outgoing today.
I told him about all the things we did –except the swings, I forgot the swings part, so that’s a fun surprise for him now! I reported back on how she continues to be more verbal now that they’ve changed up her meds based on Jim’s direction working with Lynne’s doctors. And I’m realizing that even when I don’t make sense of her words, that she knows that I’m listening and maybe that’s all she needs at that moment. And at times when her words suggest, and direct us, we can pay attention to all the additional communications signals through energy, touch, posture and presence in addition to words. It’s a reminder to meet her where she is. And to keep trying, even when she seems to be losing capability, because if we get discouraged and stop trying, then she slides that much faster.
And since she is enjoying the experience, she is getting challenges and practice and it helps her stay connected and to feel involved and to be in the world living as a member of the whole community. Which is how she always was and wanted to be. She of course will continue to progress in her condition but in the meantime we can still give her the dignity and joy of being in the world as she would have been otherwise. We get as much out of these visit as Lynne does, and it’s this sweet time together that provides the honey to go with the bitter of this situation. Making memories and enjoying the fullness of life and friendship together–that’s what these Sunday girlfriend outings are all about!

Nancy’s Super Visit

Lynne’s friend Nancy knows how to give Lynne a visit. Here’s Nancy’s report.

Lynne had a tour with me, Nancy, in Kathy’s beautiful Porsche Tuesday! We hung out a while at aegis on her floor and then fed Lynne her dinner. R., one of the second-floor caregivers, was amazing, super responsive, and helpful. They opened her apartment and brought the dinner to us so we could eat in private. We had a good conversation.

Then Lynne wanted to skip dessert and blow the joint. We found the hat by the bed and put her coat on her, got her down, and checked her out. We walked up the driveway into the sun when the cold breeze hit. Lynne complained it was cold, but there was Kathy’s beautiful ride and Lynne decided maybe she’d check it out. Then somehow, with me on one side and Kathy on the other, we got her down to the low sling of the bucket seat. I jumped in back and Kathy drove us around to Madison Park and through the Arboretum until Lynne told us she was ready to go home. We returned her and took her up to her room to get her settled in. We were both rewarded with big hugs for our efforts. Getting her into the car was a near miracle!

Kathy said, “Nancy’s persistence paid off!”

Nancy shrugged it off. “Having a good laugh about it all. It’s a team effort. When everyone believes it can happen.”

Kathy said, “What a wonderful way to spend the afternoon with our friend!”  

Lynne’s Sense of Self

When my mother was in the end stage of Alzheimer’s I believed she was blissfully unafraid behind a veil of ignorance about her disease. She had anosognosia, a symptom of not knowing she had a disease, which is different from denial. Lynne and I had hoped she would have the bliss of ignorance. Yet Lynne has had sixty days of Hospice care during which she has lost weight and trouble chewing food. She is aware she has limitations.

She has a strong sense of self relentlessly driving her behavior with meaning.  She knows she is a sapient body in space with words like “I’, or “me,” or pushing Dad away. The downside is she wants to get her body home. She gets depressed, anxious, lonely.

She also values her virtues as a mother, educator, daughter, sister, colleague. She wields a slightly smug smile when I read her notes from a grade-school teacher, Lynne’s co-teachers, fellow recruiters, neighbors, and fellow graduate students. She glows when she sees her boys, together, towering over her, coming to care for her week after week.  She responds to social communion with others who give her dignity, her worth as a person, valued, included, and not ignored. She feels pride when people compliment her on the streaks of gold in her healthy hair. She shows concerns about residents and embraces caregivers. Friends validate what she is feeling by amazingly walking her through Volunteer Park to eat a donut and people-watch at a market.

Lynne does not have my mother’s ignorance of bliss from Alzheimer’s. She has awareness for which she pays a price. In return she has meaning, dignity, and love confirmed and sustained by those who cherish her.

I hope I would have her valor and similar caregivers to sustain me.

Better Environments Help Lynne

Two friends and I made inexpensive and simple changes in her environment that enriched the life experience of Lynne, my daughter with Alzheimer’s. They enriched me as a caregiver.

Dad arrived. Staff had propped open her apartment so Lynne could walk in and out. One of the residents was chanting loudly repeating a guttural sound in the dining room. His rants have bothered Lynne for months. Lynne was in the hallway past the dining room, bent over, hands on her knees, sobbing. She reached for me and hugged me. I put on her headphones as we headed to the lobby where we could walk through the dining area.  

In the lobby she saw a staff member working in a room where I tried to guide Lynne. She resisted. No, I can’t go in there.

Lynne, it’s OK.

No.  In her room. It’s not going to work.

She thrilled me. The change in meds seemed to make her more alert. We walked toward large leather armchairs where I pulled one in front of the other because her eyesight is limited to tunnel vision in front of her. I sat down. She eventually sat down on the other, face to face. She scanned the lobby, quiet with few people. She watched the cars, buses, and pedestrians. Her blue eyes landed on my eyes, then continues to scan more. She points at a 95-year-old resident with her walker. She’s a really ni … Lynne scooted her chair toward me. I scooted my chair closer, and her eyes brightened up a little bit, with part of a smile. The rapid improvements in her mood came from the change from the environment on her floor compared to the lobby without having to medicate her.

I watch every move as closely as I watched her as an infant, loving her as deeply as I did then, and intrigued by the mysteries going on inside her. Her body twitches slightly in her chest and arms. Her hands have mild tremors. She crosses and uncrosses her legs. Her lips are turned down like the sides of a steep hilltop

I repeated tunes in her headset four or five times if she was tracking the lyrics or the beat. She was thinking about something all the time with a running soliloquy that I did not interrupt. Oh. That’s right. Where? Wow. I remember that. Oh nice. OK. The walk more. (Whispered) I don’t want the …. There’s going to be a big riot, or a fire. Yeah.  I need to go up. There. (she pointed with her finger and stood up.)  Yeah, I think so.

She joined a conversation of two staff members in a standup meeting. When they thanked each other, Lynne said, Yeah, thank you.

I talked with several staff about the problems with furniture in the hallways on her floor because she cannot sit and rest, so she bends over and puts her hand on her knees to relieve the pain. The chairs are too small for her. She is afraid to sit down in them because she has fallen several times when she tried. She tenses strongly when two people assist her into a chair. I have given up trying to get her in my car.

Staff has opened her apartment door to at least let her sit on the bed. I re-arranged her room where she has a big armchair at the end of her bed with blankets and pillows on it. I pushed the armchair to the wall and useda black table chair for the blankets. Now Lynne has an open door to a refuge with a comfy arm chair. I urged a couple of staff to get a sofas or large armchairs in the hallways for resident rest stops. I asked staff on the second floor to check with the concierge if Lynne could wander alone safely in the lobby with healthier residents. She walks out of sight into the nooks and crannies on the second floor.

I am immensely pleased I had the time and the ideas to give her a little better life. I feel more meaningful.

And then I get a call from Nancy today. She and a friend took Lynne outside this afternoon for a fantastic time compared to the sedate visit I had with her. Wait until you read Nancy’s post on this blog about the fun Lynne had in their car, Volunteer Park, a donut shop and the Broadway market. Lynne reportedly commented on the young hunks strolling by compared to obsterorous octogenarians she’s running from. I was humbled and thrilled to hear the excitement from Nancy’s voice.

Visits are Meaningful

Visits witih Lynne can be hard when we see her less vivacious than our cherished memories of her. Understandably people are afraid to visit, including me, when I don’t have a way to cheer her up, so it’s easy avoid it. And yet her condition nags at us because we love her. I have learned that my times, or family times, or friends times, are always meaningful for the visitors, and almost always meaningful for her. They are meaningful for me and others because we tried to give Lynne a better time than she would have had without our visits. Below are stories of simple visits that demonstrate visits are almost always meaningful for her. Lynne told one of her friends told her to go away, so she did, and came back the next day to share a cheerful visit. Imagine how meaningful it was for Lynne’s friend to have the courage to immediately visit again when Lynne was glad to see her.

The good news is Lynne is more responsive and walking more upright since we changed her medications. Last Sunday friend, Lynn, sent me a message. I helped Lynne eat lunch and gave her a cinnamon roll which she ate as we walked outside. We laughed quite a bit and complemented each other on excellent hairdos. She was in good spirits. Obviously friend Lynn was in good spirits about her visit.

Her boys and Pam, my other daughter, saw improvements for an hour-and-a-half lately. She pointed at me and told them. That’s my dad. She pronounced the title on a poster:  Mardi Gras. We sat in the lobby and talked. I called out a to resident close by,  Hello. How many boys do you have? Lynne answered immediately, Five. I have rarely seen visitors with her. She sits with other residents in the lobby. They tell Lynne, You’re lucky. Your dad comes to visit you.  I know those statements make her happy. They make me feel more meaningful.

Today when I met Lynne she was sobbing, tears flowed down her cheeks. She wrapped her arms around me, saying, She took it all. She took everything.

Really? Everything?

Yes, everything.

I pulled back and looked her in the eyes. Hon, I was just in your room. She didn’t take it all. It’s all there.

It is? Well OK. I lifted her mood and made me feel meaningful. I put on her headphones and backpack to hear the Sister’s Music list from her sister Pam. Lynne gazed up and nodded her head. She mouthed some words. Her body slightly swayed to the music. I was glad I brought the headphones and Pam sent a list. It kept her mood mellow. Pam and I both feel more meaningful about her music. I am grateful for Pam’s care.

I walked beside her, slipped my hand under hers and left it open. Sometimes she moved her hand away. Sometimes she let our hands touch. Sometimes she grabbed my finger, three fingers, the whole hand. Sometimes a grip. Sometimes gentle. It made her more connected, secure, stable. I felt more meaningful. I steered her up to the 6th, 5th, 4th, 3rd floors and the lobby. She studied photos revolving across television screens on every floor. She often turned to smile at me. We were both getting some exercise. I felt more meaningful. I waved to her when I left her floor before lunch. I felt I improved her feelings for a little while. I felt more meaningful. Don’t let fear keep her from giving her a more meaningful journey.

Friends Can Care More

Nancy and Lynne in Sunshine

Nancy and Lynn, friends of Lynne’s, sent me this message. “We took her over to the Capitol Hill farmers market (which she always loved) and enjoyed some spicy street food, hot Chai tea, and a Valentine’s cookie while we sat out in the sun in the park. She enjoyed the sun on her face and watching the dogs playing. She kept pointing, “Look at that one.” and so on as we sat there together.

“She was very verbal again and stringing a few broken phrases together. Her body awareness continues to be a challenge, sitting down is harder now. She was happy and talkative.”

I responded, “Nancy that sounds tremendous. It’s a far better day than I’ve been able to give her for months. What jewels you two people are. I hope you can appreciate how much joy I got out of this message.”

Updates Under Hospice Care

Lynne and an oncoming hug

Lynne’s bumpy trip through her first week in Hospice and Palliative care led to adjustments made by the work of her new nurse in consultation with her entire medical team, caregivers, and me. I had become concerned by the declines Lynne showed that week. Lynne was minimally responsive on a sofa in front of the fireplace as she concentrated on the music in her headphones. Lynne walked leaning to the side and backwards with a very stiff back. She fell onto floor near a chair, but no harm. She sat with her head looking up at the ceiling in a rigid position at an ice cream social where I spoon feed her. One morning she had returned to bed with one leg hanging over the side and kept dozing off as I stayed briefly. The floor med tech decided she was in a lot of pain from walking and leaning backward one day, so gave her morphine, which scared me.  Yesterday morning when the floor manager observed after being gone for a week, she said, “This is not Lynne.”

The new nurse calmed me down. I was worried at what I saw in comparison to my unrealistic hope she would show immediate improvement. I felt derelict as caregiver because I did not get accurate information from the beginning. I am pleased with nurse’s response and expect I’ll be updated on her care.

I contacted her new nurse yesterday and passed on my experience and what I had picked up. She called back after supper with her report. She had seen Lynne one-half-to-an-hour after the of morphine, which is during the peak time for its effect on the resident. It was a very low dose and Lynne was fine at that time. She informed me about Lynne’s new prescription of Tramadol twice a day and cut-in-half her Seroquel dosage at bedtime. She also clarified misunderstandings I had from incomplete  information in my talks with staff

Yesterday morning she stood rigid listening to the music director lead us in floor exercises. She sang lyrics with from Love is a Butterfly. Lynne enjoyed watching the musical director and me as I led us in stumble dances through two-steps, tango, and east coast swing under the direction of a resident trained as a dance instructor. We can still have active fun.

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

M

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

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.    

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