I received a care call after dinner last night from Luna, the Director of Operations at Lynne’s assisted living. She says, and most staff say, caring for a family caregiver is as important as caring for each of her 120+ residents. She wanted me to understand Lynne is much improved since our drive her last Monday. She ate her full meal. She is agreeable, not aggressive; calm, not anxious. She sleeps better. Her feet don’t hurt. She likes her shoes. She helps residents but worries they don’t respond. Luna said, “I say, ‘Lynne, you have to remember, they have dementia.’ Lynne says OK and continues to help. It’s a marked change.”
The Boys and I saw similar responses an hour earlier in Outdoor Living. She welcomed me with a strong hug. She giggled to see them, talked, remembered, laughed. She wants the Boys to visit her room. The boys want to. We were encouraged.
She was excited about a thank you card, but when she read the cover that said ‘Cougars,’ she said, “She’s from Washington State.” When we left had to remind it was her card.
She remembered a South Eugene high school friend who contacted me. The friend had a riotous time with Lynne at the last reunion and plans to connect with her. The Boys reminisced with her because she took them with her for one of their driving trips.
Staff are eliminating tranquilizers to get a new baseline and phasing in new ones, but Luna didn’t have the details. She promised information about her medications when she went back to work.
Let’s hope she is comfortable in the baseline and any replacement medications help her felicity. We know Luna’s care call helped my felicity.
We are still stumbling forward on her footcare. Last Thursday with her sons Lynne told us her right foot hurt. I took her boot off. When I walked her inside she had put her boot on and zipped it up. She’s persistent and inconsistent. I decided to replace the boots.
Lynne wore socks in her Velcro shoes and brought her boots to the shoe store. When we took her shoes and socks off, the heels and ankles on both feet were bleeding.
The store owner stopped the bleeding and put band aids on both heels and ankles of her feet. The owner refunded the boots because they were inflexible for the foot size she wears. We bought new socks for her black shoes.
I was furious about the bleeding and wrote an email that her foot care is unacceptable.
Pam said bleeding was completely unacceptable. Keith said, “Pops, this isn’t Aegis fault. New shoes and no socks make no sense. Of course, she is going to blister. Wearing socks just needs to be the new standard. She needs comfortable shoes and socks.”
Luna, operations manager, (not her real name) set up a family conference on foot care and medications. Luna acclimated us to the new world of Lynne’s moods. She gets frightened, anxious, aggressive, and angry. Once she gets angry, there is no talking her down. She will not stay alone in her room more than a few minutes. Staff calls to cheer her up with calls to me, friends or family work until she hangs up and reverts, which explains why I‘ve had fewer calls.
She walks constantly around the lobby where she can be observed, or where staff lead her to other areas such as Life’s Neighborhood, outside garden, and sixth floor outdoor patio. She says hello to people she meets. She won’t sit long enough to finish a dinner, so staff give her snacks between dinners. We’ll have to watch her weight. Luna warned us that their plan to eliminate her current medication for a baseline usually takes 30 days, and another 30 days to find a new level. Luna noticed she leans to the left when she walks, which may mean an inner ear infection. She’ll have nurses check on her.
Then Luna reviewed the condition of her feet and shoes. Lynne pulls off her shoes and socks and puts them on perhaps 30 times a day. They can get lost, so Luna says she has a black marker to write the name on the shoes. We need to replace those shoes every 6 months. Luna said the reason Lynne had blood on heels was because she had blisters from wearing the boots without socks for two days and then wearing them other times. The blisters ruptured on Friday when we took her to the shoe store.
Aegis staff, nurse and a podiatrist have checked the pain in Lynne’s foot. A nurse and the podiatrist used a technique of comfortably holding her feet while chatting until she’s distracted before pressing all toes, bones and soles. She didn’t wince either time. The X-Rays did not show any reason to cause pain.
Pam and Luna recommended we buy slip on shoes for the summer, so Pam ordered the ones she likes at the shoe store. Lynne liked the fit. She also liked how easily she slipped them on and off in the store. Afterward we drove around Lake Washington listening to Bruce Springsteen, which gave her time to take her new shoes on and off often. When we returned, the concierge suggested we put her names in all four shoes. His black marker did not work in her black shoes. So, he used a machine that printed stickers with her name. We pasted them on the leather and edges of the cushion with the hope the stickers will stay on as her shoes come on an off.
Caring for her distress is getting harder. Feeling her in distress is getting sadder. Doing the best we can do as a team makes it easier.
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 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 called. She was quiet until saying, “She’s nice and I don’t want to commit and not follow through. I feel like I fit in. It took a while.” I agreed she is nice (I had no idea who she was talking about). “But you always follow through. She helps you walk. You get a good sleep. You eat good food. You ride your bike. You listen to music. You always follow through.” She agreed and I piled it on. “You always followed through in high school. I was writing from your journals and letters today. You didn’t want us to buy a house on a hill because it was too difficult to walk home from school. We bought the house anyway, and you bought a scooter you hid in your friend’s garage, so you could drive up. You, your friends, and your brother drove all over town. I never knew.”
She laughed. I added another story. “You felt the chemistry brewing with a causal boyfriend after talking with him throughout a ballgame on a date with a different boyfriend, followed by a month of eye contacts, chats in the hallways, teasing from girlfriends. Finally, one day he told you to call him if you wanted to see a ballgame with him and his brother. That was your chance to find out if he was serious. You said, “Call me if you want me to go with you.” “You knew he didn’t know your number. You waited. You prayed. Finally, he called. You knew, you knew, he would be your first love.” Lynne smiled. “Yep.” I piled it on some more. “Your good friend on the yearbook staff told me you were the one who organized work, because she was such a flake you felt you had to keep her on track.” Lynne laughed but objected. “She was not a flake. She did a lot for us in the yearbook. We worked on copy together.”
We paused. “OK, Dad. I’m ready for bed. I love you.“
She calls and I’m there for her. I can tap into her joy to let laughter flow over us and rinse away fear for a while. I’m learning more intimately about her and loving more deeply as I learn. I’m learning more sympathetically about me and healing more deeply as we share. Being there is a balm for the years I was away. I am living the lyrics of Kris Kristofferson’s song, Loving Her Was Easier: “Coming close together with a feeling that I’ve never known before in my time. Wiping out the traces of the people and the places I have been. Dreaming is as easy as believing it is never gonna end. Loving her is easier than anything I’ll ever do again.”