Lynne joined me for our visit in a private room. She wore black and gray cotton sweaters, summer red and yellow capri pants and flip flops on bare feet. We had 11 inches of snow outside her window. She said, “There was so much snow. … You couldn’t go.” I had decided to amicably encourage her by quietly listening to every word, if she was in a good mood. I want to know her thoughts when she spends hours alone, or absorbed in thought around other people, and when staff doesn’t need to call me because she’s anxious. Quiet smiles amid slurps of our strawberry and vanilla milkshakes. “They’re going to get someone new. … Not yet.” She looks at the floor. “We had it all. We have family. We’re together.” I nodded, “We are.” She squeezed her hands. “And they’re so good. … We’re so lucky. … We’re so blessed.” She sat back. “That’s why they say, ‘I’m uppity’…. Because we have it all.” We opened her 55th birthday album of family photographs. She paged through it, stopping with a laugh and a point. “They were so little. … I loved that shirt.” She’d follow a thought in silence until she noticed the album and flipped another page. “There she is.” I read her the poem, I’m From Mom, which she wrote for Karen on Mother’s Day in our fiftieth year of marriage. She laughed, repeating phrases. After half-an-hour, she leaned forward. “I think I should probably get back. I don ‘t want to overstay. Or they’ll think I’m uppity.” We showed her poem to the concierge, who read it along with her. “It sounds like Mary Oliver,” he said. He made a copy for the Activities Director, who promised he’d read it in poetry class the next day. I slipped out.
Lynne’s friend Ellen is a speech pathologist who worked with special education students. Ellen saw Lynne engage with kids on a playground. “She had an incredible knack for connecting with kids. Open, honesty in her approach, just unwavering for a kid. She had a knack for saying true things, not greater than it is and not less than it is.”
Ellen thought to herself: “Why don’t we have her as a teacher with us?”
Years later Ellen helped Lynne’s students in special education. “She was a great experience for anybody, especially kids with behavior challenges. She was drawn to them, worked with them, and made a difference with them. She had a highly unusual authenticity, connected. She didn’t have that hierarchical tone. Consistently with kid after kid she convinced them, ‘We are peers in our humanity.’”
Lynne’s three boys, mostly men now, over 18 and 6’ 3” tall who wrap me in their arms, visit Lynne an hour every Thursday when they are together between fulltime schooling and work. Lynne squeals with joy when they sit down in the outdoor living room at Aegis. They share and laugh for an hour over memories and current stories. Rides on her scooters. Scary rides at theme parks that stopped at the top. Cars they liked to drive or were afraid to drive. Lynne burning up her Mom’s car engine in high school. Lynne pumping up her ballplayers by urging them to visualize themselves making a great play. It worked, one said. The older twins describe a neighborhood playmate who towers over them now. One remembered the playmate’s mom, a friend of Lynne’s, would criticize him as if he was her kid. Lynne telling them to write down goals. They never did it but they agreed research shows it works better if you write them. Agreeing, You could talk to her about anything, everything. It’s taken a long time for me to get her brotherhood into a regular schedule on topics they would enjoy. At first irregular visits were awkward with uncomfortable silences. I reminded them dementia wipes out short term memory and language skills first, leaving her able to recall long-term memories. Plus, she is interested in whatever interests them. They keep her animated. They look forward to it, arriving early the last two visits. I worry they will forget. I remind them. I worry the boys will feel guilty they didn’t visit more, like I feel guilty about my mom when she had Alzheimer’s. I worry once a week is not enough. Lynne said recently, They don’t have to do that. They’re so busy. The whole family worried as the boys’ school performances deteriorated during their shock over her diagnosis. The twins left college to come back together to support each other to support her. She frequently remembers them when people ask her about them, they are all doing exceptionally well. Now she falters to find words to name them even as she shakes her smiling face in bliss. I worry I should do more. I should visit outside more. I should call her on video chat more. She rarely answers because staff says she stays in the shared living area. I reason if she’s not calling me, she’s happy with some other activity. I hear her ringtone on my cell which usually means she or staff want me to cheer her up. Sometimes I ignore it because I can’t find the courage to help her. I feel guilty. I tell myself about all my other responsibilities as a widower, writer, investor, father, grandfather, and sharing her story with friends. I have to exercise and stay active for my mental healh. But I still feel guilty when I remember I visited Mom less and less as her awareness drained out of her. I might have done more. For now her boys love their visits, and are busy doing well, which is Lynne’s ever accessible joy. And if they feel guilty in the future, I hope they can forgive themselves. I can ususally forgive myself, but there is always the residue of doubt about what I might have done.
Lynne settled into my new red Mazda CX-30 for a sunny afternoon drive through her old neighborhood listening to songs from her playlist of favorites. We drove past the Greek Orthodox church. I asked, “Did you ever go there?” “No, it would feel like I was intruding.” We drove down the alley by her house where she raised her newborn sons. Blossoms still towered over her tall fence. She recognized the ballpark and Montlake elementary and the playground equipment where I played tag with her sons. The late afternoon sunlight blinded us as we drove past houseboats, prompting me to tell her a writer in my class is working on a memoir of living on a houseboat for 20 years. We stopped at a waterfront park to see squawking ducks and a fearless pigeon that posed for a photo with Lynne. A daddy chased his laughing children as landscapers said they were planting 3,000 plants, so we thanked them. Kayakers on the water reminded us when Mom loved a lake where our camper trailer perched on a bank above a muddy shore. Lynne laughed. “The Mighty Muck Monster.” That was our kids’ favorite of many stories I told around the campfire. The Mighty Muck Monster rose out of the muck, so I warned them to stay away from the shoreline muck day or night. I needed an ending, and it came to me from somewhere. “It was afraid of nothing,” I paused. “Except, for one thing.” “What was that,” they asked? I leaned forward for my hushed answer with complete conviction, “A mad mommy.” Oh, yes, they could imagine their mad mommy protecting them from the Mighty Muck Monster. We drove around Lake Union for an hour to arrive in line for shakes at Dick’s Burgers in the gloaming. We were cold by the time we got back to the car. We headed home as The Judds sang their song, Love is Alive. She mumbled something, so I patted her knee and asked, “A little cold?” “No, I’m happy.” That thrilled me. It awakened me. I was happy. For the most part we were as comfortable a couple as Karen and I would have been — there were exceptions of course, like when Lynne tried to take my strawberry shake after she downed her vanilla shake. I constantly search for different ways to make her happy. At times it seems simple, and at other times, hopeless. Maybe I make it too complicated.
Lynne and I are mentioned in this article in the the Seattle Times.
Social isolation is difficult for anyone, but advocates say that for residents with Alzheimer’s or dementia, a lack of visits and decrease in mental stimulation can accelerate cognitive decline that in some cases may be irreversible.
This is what I wrote Paige Cornwell about the article. “What a great story of the isolation and loss of caregiving available for residents. I want to add information that I had not given you. Lynne was a special education teacher also before she had to retire. And Aegis Madison has now granted me essential caregiver status to visit Lynne twice a week, even being able to take her for a ride in my car.
That picture of us by Ellen is incredible (actually there are three pictures linked on the website). Thanks again for all you’re doing to educate people.
We arranged an hour when friends and family would be ready to chat with Lynne and me for 10 minutes. We exchanged camera photos. Everybody enjoyed the voices and faces. Share your visits and spread the love.
Aegis staff and residents are scheduled to receive their 1st Covid-19 vaccination Thursday, 1/14/21 from 11 am to 5 pm. I have signed her vaccination authorization. Their second shot must be delivered within 21-28 days after their first one.
I planned a cross-town trip for Lynne and me to Alki Beach. I made a playlist of the music at her birthday party. I expected we’d need a bathroom break half-way through, so I planned to be at the east side of Alki Beach where there would be some restaurants open with social distancing. Lynne buckled in and asked, “How do you like your new car?” “Fine I feel safer.” It’s a red Mazda CX-30, given a five-star safety rating by the National Transportation Safety Board. I bought it because Lynne, her brother and sister said it was too dangerous for me to drive my old car. They were right and I knew it. I would not have planned this trip with my old car. I started the music with I Want to Dance with Somebody I Love by Whitney Houston. We heard it three times before I switched to the next one. I think it stayed in her memory to the end of the trip. Lynne said, “I’m getting more comfortable about driving.” She spoke in complete sentences, not two words at a time as staff have told me. That was encouraging. Lynne sang along as I chatted about stories of her teaching days and how sad it was restaurant owners were losing money from shutdowns without economic relief. She was excited to see the historic Admiral Theater. We reached the west shore and as soon as we hit the eastern shore Lynne said she had to go to the bathroom. Luckily, we saw Salty’s on Alki Beach, a high-class seaside seafood restaurant and bar. It was spacious and empty. The concierge said, “Sorry, we’re not open until 4:00 pm, but you could get carry out.” He gave me the menus, which were not promising. “Do you have any non-alcoholic beverages?” “I’ll check,” he said. Apparently that was an unusual request. Lynne went in the bathroom and came out right away. “Did you go?” “Yes.” The concierge said they had ice cream and could make us a root beer float for $4.50. I splurged on two. Lynne went back in the bathroom and came out right away. “Did you go? “Yes.” We waited a while, probably while the concierge searched for the dessert chef to fill our order. I told Lynne to stay seated and I went to the bathroom. Lynne came in to wash her hands when I washed my hands. We went back out to wait. Lynne said, “OK, now I really have to go.” I wasn’t doing anything, so I said, “I’ll go with you.” She went to the sink to wash her hands. I went to the first stall. “Hon, why don’t you use this first?” “Oh, that’s where it is. I couldn’t find it.” I waited in the restroom to help any other woman who might come in. Suddenly I heard Lynne shout, “Oh, oh.” “Are you OK?” She quickly calmed me down. “It’s OK, I found it.” She looked at the sink as she headed for the door. “Aren’t you going to use the sink?” “No, I’m OK.” By that time that it was OK for me too. We waited by windows in the waiting area. The concierge came out with two floats in paper cups. I poked the straws in the cups as he showed Lynne an eagle’s nest in the woods, and a newer one close by. “We had two eagles when they were on the endangered list, but now we have five. I love to watch them. Enjoy.” She sucked her float dry, lifted the lid on the trash bin and tossed in her cup. She stayed by the window where she saw the back of a carved wooden statue, possibly Salty. She said, “He’s not moving. It must be hard to stand there all day.” I gave Lynne the leather bill holder with the tip to give to the talkative eagle lover. She liked that idea. She came back with it. She went back again and came back with it again. Together we found him and thanked him. As we headed up Madison she talked again. “I think I want to talk with somebody.” She was repeating Whitney Houston, enlivened by her chat with the gregarious eagle lover. A few blocks later, she said, “They might be watching a movie.” A few blocks later, she said, “I have to work on knowing when people want to talk or not.” I told her, “Lynne, everybody I’ve talked to says you’re an extravert. You know how to talk to people. You have to remember a lot of people on your floor can’t even talk.” We told the Aegis concierge Lynne wanted to talk with some people. The concierge said she definitely would do that. How could we create the same secure feeling with music and scenery to reduce anxiety and increase connections for loved ones with dementia? I ache in my loneliness about her loneliness. I tell myself to celebrate a safe, secure, loving time — a time to dance with somebody you love.
People in late stages of dementia can relive memories wrapped in their five senses and heartwarming emotions. Those are the best times for Lynne and me now. I’d like to learn more ways caregivers can help loved ones relive those memories. Recently, she was snug in the front seat of my car listening to Neal Diamond music and singing his lyrics as we drove through a rainy night. She looked out the window at parks and restaurants in her Madrona, Leschi and Capital Hill neighborhoods, interrupting her singing to briefly comment on the scenes. On a video chat she listened to me read every word of Sharon Olds’ poem, First Hour. It’s about a newborn’s thoughts. I told her that and when I finished she immediately remembered holding each of her three newborn boys. I, we caregivers, want ideas to reach deep into more of those memories so we can relive them in restricted, confusing, anxious times. I have read recommendations about how to assist Lynne’s behaviors when I’m with her. She opened a back door of the car to sit on the lowered seat, but said she couldn’t get her legs in. I guided her into the passenger seat. She quickly tangled her neck in the seatbelt until I clicked it in for her. I’d like more training on drawing out the deep memories, especially when I can only care for her on a video chat or sitting alone with her, even then unable to touch her without gloves and a shield, let alone hug her. What senses and emotions help draw out pleasant memories? In the car, did feeling snug in her passenger seat relieve her anxiety and let her focus on the scenery? Was it the music? The lyrics? Me by her side? With the poem, did it help to feel secure in her favorite chair? Me introducing the poem by talking about newborns and mothers? Dad’s familiar voice? The flow of the lyrics? I search for connections to memories by watching, listening, asking and showing her pictures to see what settings, words, images and names excite her senses and emotional experiences. I need help. And I confess I feel pressure because her reservoir of memories is draining away rapidly. Can I get help from our worlds of virtual reality? Lynne had a fabulous time with friends at a Lyle Lovett concert two years ago. Could she wear virtual reality goggles and earphones to sing and dance with fans and friends at concerts like Madonna? Could she dance in sock hops on reruns of The Dick Clark Show? Could gaming programmers develop videos for people with dementia where they could hug avatars instead of zap them? Could exercise equipment manufacturers mimic virtual scenery while residents exercise on stationary bikes? Could we collect videos from family and friends to rerun in endless loops like TikTok videos? Could we download YouTube videos? There must be people who could recommend more ways to raise up Lynne’s memories for us to enjoy in the present Covid restrictions — experts for caregivers, architects for room and building designs, owners of assisted living facilities with lively experiences from households or neighborhoods. Please help.