Lynne’s three sons walked her outside for the first time in over a year. She obviously enjoyed it. It took a while to convince her. We were told she didn’t want to come down from her room. So we asked if her oldest could go up to see her. When she saw him she was ready to come down. Simple pleasures, heartfelt memories.
When we went for our drive Monday she hesitantly let me buckle her in. I gave her a blue thank you card from a friend for the surprise birthday visit Lynne and I gave him. She said, “Oh look, he remembered my name.” I inserted it in a book of poems I bought her by Mary Oliver titled, Felicity, the quality of being happy. “Who gave me this, Nancy?” “Yes.” I don’t think she remembers I’m Dad when she sees me. She doesn’t call me Dad. She’s losing track faster than I expected, even though she has regularly dropped rapidly followed by stable periods. This feels like the last stage of recognizing people. I knew it was coming, but I am surprised how much I’m afraid. Karen and I cared for her until I lost her, forcing me into a primary focus on Lynne and a memoir to adapt to being a widower. I don’t know what I’ll do when she loses all recognition in steeper and steeper declines. Where do I find my purpose? Is writing her memoir enough? Caregiving is getting harder. At least we have car trips with a vanilla shake at Dick’s Burgers. I buckled her back into the front seat and set the shake on the roof above my back seat before I climbed in. When I remembered the shake on the roof I hoped it was still on the roof with my smoothly slow driving. It was gone and I needed to run through the car wash. I reminded myself to put drinks on the hood of the car, instead of the roof, so I’ll see it when I get behind the steering wheel. It’s worked for decades. Am I losing it? I recovered by stopping at Starbuck’s in Leschi for her favorite lemonade and iced black tea. She never missed her shake. IBesides, if she’d remembered it we’d have been fine. Karen would have reminded me. My drive was designed to place her in a sanctuary. I was mostly silent. She agreed to a playlist of her birthday songs and sang their lyrics. I let her rest, relax. My purpose is to stream experiences into her psyche she rarely feels in assisted living. When I drive she moves and sways. She effortlessly experiences cherry blossoms, yellow daffodils, an Orthodox church, playing fields, playground equipment, Montlake elementary, Lake Washington Drive, arboretum, children, horns, jack hammers, air brakes, dogs, cats, a dog kennel, the Coyote shop, the smell of coffee and ripples on Lake Washington glistening with sunshine under a blue sky over snow-capped mountains. The streaming experience is guiding her mind instead of me, staff, schedules, medications, meals. She is connected with me. She fingered the blue thank you card and rotated Felicity from front to back. She opened it. “That’s so nice of Nancy. I’m going to read this.” Speaking is easy, flawless. “That playfield is deep. The arboretum is beautiful. Look at the dog. Oh, there’s the dog kennel. That Cayote shop is so good.” At one point I reached for something near the gear shift and she slapped my hand with the blue thank you. Why? What was that? Was she warding off my hand? I know she’s been afraid and anxious, so was this an impulse to ward off somebody touching her? On our last hug she gave me a loose shoulder hug. Is she fearing an embrace because she is losing recognition of people? My purpose of the trips iis to give a sanctuary without the necessary demands of institutional care where she is denied, corrected, and redirected. In her sanctuary she did not ponder answers to questionanswering. She was not confused, anxious, lost, afraid, wandering, confronted, threatened, unsteady, alone, hiding, escaping, shouting, angry, aggressive, hopeless, useless, hungry, thirsty, tired, worrying, hurting, stumbling, or falling. Creating her sanctuary makes me lonely. I don’t tell jokes to hear her laugh, or praise her boys to get her joyous. Talking pressures me and and it’s not reaching her as meaningfully. I have become a bystander, a monitor. I know loneliness is normal in Seattle’s dreary winters, but I haven’t been lonely. I shared my feelings of loneliness with my son on his visit, and my youngest daughter on the phone. She was lonely because she couldn’t visit. I shared my feelings with three care groups, which is all I could work in. They all helped me. I had an epiphany: visit my daughter in Chico, California. She has been isolated, I have been vaccinated, we are lonely. She isexcited. I’m excited. It lifted my loneliness from facing another weekend alone watching players dribble in every basketball game I could record. I’ll hug my daughter, her husband, my dog and her dog. We’ll walk in 70-degree sunshine along a river running through the forest in Chico. We’ll talk about our writing. I’ll work on her patio. I feel guilty because I’m leaving Lynne in assisted living. I doubt I’ll tell Lynne I’m visiting her sister. She won’t miss me. We can talk by phone. I feel guilty about keeping it a secret. Telling her would make her sad. I worry she’ll discover I’m there. She loves to visit her sister. When I dropped her off, I turned to wrap her in my arms, but she resisted as if I was smothering her. She turned to ask the concierge for help with Marilyn. He reached out to touch her hand, “OK, say it again Lynne, because I don’t know anyone named Marilyn.” She held Felicity in her other hand.
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 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.
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.
Lynne & a caregiver called last night. I said, Do you want to hear a poem? I have Billy Collins book, 180 More. It’s First Hour, by Sharon Olds. Yes It’s about a newborn’s first hour before being taken to mother. I read it. She listened. Do you remember when they laid your twins on you? She rose into a smile. Oh yeah. Skin on skin? Yes Did you hold them in each arm? No, I kept them separate Do you remember Christoph? Oh yes. I worried about him Why? The Girls. Soon she said, Well I guess I’d better go now Ok, well I have more poems. 179 more, so call any time OK, Dad
I can take Lynne outside alone, so in heavy rain we quietly drove to the lakefront and around town playing Christmas & folk music. She focused on passing scenes with memories of walks and restaurants. Caregivers found her missing birthday dress.
She clicked into her front seatbelt. We liked seeing Cal Anderson Park swept clean again and hoped the neighborhood could find peace. We sipped Dick’s vanilla milkshakes. We drove past her former home. She remembered times at closed restaurants close by, her boys playing along the shoreline, Uncle Ike’s. She laughed when I reminded her she walked me downhill to the Lake so fast we had to turn around so I could get back up. Finally, she carried her heavy Christmas wreath of green and red bells up her room.
We celebrated at a party, a two-day Zoom party for Lynne’s 55th birthday. It was coordinated by her friend Nancy with participation from over 25 Aegis staff, family and friends of Lynne over the last 50 years.
They sent gifts to me, which I delivered and photographs to Nancy, who shared them on Zoom. Nancy collected titles of Lynne’s favorite songs and artists for dancing and singing with her, including a Congo line. We’ll create a new Alexa playlist for singing and dancing in her apartment. Aegis reserved a conference room for an hour each day and decorated it for a party. Caregivers sat by her side. She opened presents and ate cake.
The room had a massive TV screen so Lynne could identify individuals in the Zoom matrix as they shared how much Lynne meant to them as a friend, and often gratitude for her role in their careers and marriages. We saw her face light up over and over. We shared lots of laughter and dabbed at tears.
This celebration blessed me with gifts. I am blessed she welcomes me as her dad. My respect for her grows and grows, even bordering on awe, when I hear who she is as a sister, wife, mother, recruiter, teacher, lover, friend, and most rewarding for me, a daughter. At times like these, I am grateful for what she means to people, many of whom know her better than I do. Which makes me profoundly grateful for this community of caregivers. We are a community who care for her and for each other.
I couldn’t live up to her expectations if I had to care for her alone.
The Director of the Aegis facility indicated that I was cleared be an essential support family member, which permits me to have two visits per week with Lynne for either an outdoor walk or a personal visit in the lobby area.
The privilege is a serious responsibility impressed upon me by the director and activities director. They drilled me about protocols and stressed they had no Covid in the building, so if it comes in, it will come in through me. We were not to walk near a park two blocks away now overrun by homeless tents. If I visited, I could hug Lynne with a medical mask over my mouth and nose, a plastic shield over my face and a medical gown.
Friday we walked in a quiet neighborhood to view Christmas decorations spreading light in the gloaming. We phoned Henrik. It felt like normal family time. On Monday Lynne gave me her still strong hug for the first time since March. She also hugged a Christmas gnome from our family decorations to go alongside the 12 wooden Santas from her home. Thanks to neighbor Jennifer for that suggestion. We video chatted with Keith, Sheri and Pam.
Lynne told us that she felt safer recently — “things have calmed down a little,” is how I think she said it.
The visits gave us tenderness that felt close, lively, calm, satisfying, and relief from the painful, frustrating isolation we’ve been enduring.
We are grateful to be one step closer to our pre-Covid normal this Christmas season.