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.
caregivers
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
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.
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.
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.
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 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’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.