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.”

Lynne Can Have Visitors

Lynne’s Aegis community is open fully for you to visit or take her out. A gentle reminder that all visitors will be required to show proof of receiving a COVID booster prior to entering and masks must be worn at all times please.

Lynne loved the sun on her face and closed her eyes for the sweet dreams she was having on Sunday when her brother and sister-in-law took her for a walk outside, after a long wait.

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.”