Aegis reduced its quarantine restrictions allowing caregivers to accompany Lynne on walks as many as three times per day. She’s active, so the floor supervisor gave her a fourth walk one day. Our family ordered a stationary bike for her room, where riding it would lift her spirits during Seattle’s oncoming cold, rainy weather and future lockdowns. She and staff were happy when I printed a picture for them. That picture lifted my spirits before it arrived. I scheduled an Outdoor living room visit where we could talk through plexiglass shields. I showed her a heartwarming video of a Labrador mother using her paw to protect her last puppy from being adopted. Lynne’s vision has declined so she used her finger to focus on it. “What is it? Is it mine? Is it a puppy? Is it mine?” “No, it’s just a funny video.” I wondered if she thought it was her dog. She stood up, disappointment draining the smile off her face. “It’s not mine?” She started to sob. She had said she wanted a dog earlier that month, but we had told her that wasn’t possible. “Honey you can’t have a dog up on your floor.” She sobbed as she stared at me and backed in and out of the curtains twice, sobbing harder. She staggered toward the front door and hit the windows again as she backed away from me. I stood up wondering what I could do. A caregiver came out quickly to comfort her as she guided her back inside. I told them it was about a puppy. I was sad and miserable. How could I have forgotten she wanted a dog? Very soon I got a text message. They had redirected her to the picture of the bike. “She’s fine now.” I was too. Caregiving is a long, bumpy ride.
Maybe I began to get hopeless because I stayed inside on Saturday morning when Lynne and her exercise trainer went outside and I missed her. Maybe it was Sunday when I slept in until 10 am and missed her again. Maybe that’s why I felt handcuffed to my apartment. Her comfort care in assisted living felt like it was going well before the Covid-19 confinement, but now it doesn’t feel like it’s working well enough. I’m feeling hopeless, helpless. I cannot sit with her and absorb what she’s experiencing. I want to see her with Schmitty nesting, purring, petting, grooming, brushing. I want to check on his food supplies, kitty litter, sleeping blanket, hideouts. Would he come to see me? Do other caregivers like him? Or, we could run through her Facebook to see who sent her messages. For example, someone sent her a message and I found out she is from our hometown of Eugene. Liz in marketing at Aegis said she fixed Lynne’s necklace and I’m jealous. I could have at least fixed that. I’m glad it happened, but are there other times, other necklaces, clothing, shoes that need fixing? My video chats are too often hit or miss. Someone can help set her up, but she’ll click it off at times. I’ll wait for her scheduled call and it won’t come. Is her phone charged? I bought a stand for her phone, but staff say it doesn’t work. Why? I can’t figure it out until I get it back. There are Zoom meetings she could join if we could reliably schedule them. It’s all too uncertain. Staff are trying hard. They’re busy. Am I too patient? Should I get agitated? I feel useless. Not in control. It’s not working well enough. If I was there we could watch her favorite TV crime mysteries on channel 103 like we used to enjoy. I ask her if she watches TV and she says that’s an idea. She never remembers watching it. She can’t find the channels. I bug staff to turn it on, and worry about bugging them too much for something that Lynne isn’t interested in. I hate the helplessness. It’s not working well enough. Friends who Video Chat with her give me suggestions from their conversations, such as “Lynne says her feet hurt.” I hadn’t heard that and passed it on to the medical director and the care director. They hadn’t heard it either, but would check it out. I wonder if they remember. Lynne doesn’t mention it.. She reads. I’m grateful staff say she’s always reading. I could read to her. They recommend a book case to store her books scattered around her apartment. They worry about her safety. That doesn’t worry me. I like them spread around so she runs into them, sits on them, touches them, opens them and gets pulled into another orbit beyond her loneliness. The worst part haunting me is her loneliness when she’s not reading, or outside, or chatting. I get her calls when she’s so lonely she breaks confinement and shows up at the concierge desk in the evening or early mornings. The concierge calls me and I cheer her up with good news and jokes. She says I always cheer her up, but that never opens her up to share with me what she’s wrestling with, thinking about, feeling, remembering. Auto-biographical memoirs of people living with dementia talk about their confusion, or feel like they’re rambling. They regret what they have lost. They like writing and sharing their thoughts. Lynne wrote about those thoughts in a journal in 2014-2015. She was failing at her job teaching special education students. She had never felt continual failure at anything. She solved her problems and decided a journal would help. It was her last journal. She gave it to me. It contained prayers. Her first entry on January 5, 2014 was, I want to know that everything that needs to happen is already in process. I want a cease fire in my war with time. I want to move through my day with grace and ease. She didn’t write again that year, during a time she quit in frustration and the District convinced her to transfer to another school. Exactly a year later on January 5, 2015, she wrote a hopeful note about a cease fire with time: I am grateful to remember that I have enough time—time is only a figment of my imagination. The cease fire didn’t last, but she fought on until July 14, 2016, when she agreed to see a neurologist. I went with her. He gave her the one-page Cognitive Assessment of Minnesota and she admitted she had problems with it. He was “concerned” and scheduled an MRI. Karen wrote this email to family the next day: “After the appointment, I asked Jim to bring Lynne here and she agreed she didn’t want to be alone so she’s here now. Lynne is now accepting that she may have some serious problems and she’s frightened and very sad. She’s been able to talk about her fears with us.” That’s over six years since her first journal entry! What thoughts does she wrestle with now? When I’m with her she will ponder something and begin to respond with an introductory phrase like, “That’s what we did at ….” And pauses. She searches for the noun that fits, and, given time, she may find it, or we may help with suggestions, or she’ll get distracted, or give up. Care giving advisors say, “Join them in their reality.” That’s not much help when you can’t find her reality sitting beside her, let alone from another apartment. The isolation from the Covid-19 virus combined with her stage of acuity has disrupted her care and it’s not working well. I keep rebelling against it, but I can’t come up with anything else to dramatically improve the care we’re giving her. It’s not working well enough. I feel helpless. Hopeless.
