Nevertheless Dementia, We Persist

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!