Nevertheless Dementia, We Persist

I haven’t posted for a while because too much happened that was too complicated to write. This is a catch-up post.

Lynne had two emergency room hospital Visits. We sat in emergency rooms waiting and waiting for someone to tell us what was going on. It was surreal to sit beside Lynne’s hospital bed. Every 10 minutes, “Ok, I can do this,” and tried to get up to go the bathroom. The first doctors thought she had a TIA that appeared to be a stroke. The second doctors diagnosed a Grand Mal Seizure that lasted two minutes. Her neurologist diagnosed the two seizures as epilepsy. He prescribed medication that should prevent more seizures. Epilepsy occurs in about one-quarter of people with late-stage Alzheimer’s.

Our family was dissatisfied with Lynne confined to the memory care unit. A former care director with an office on memory care’s floor recommended she move in where she could visit the director and help residents in June 2020. But the director left, and the current residents are 20-30 years older, mostly immobile and usually incoherent if they speak. Lynne walked around the floor by herself and viewed those residents every five minutes.

I believe she understands what we say, understands what is happening around her. She laughs at jokes. I think she sees her future in the residents, and it scares her. She cannot help them. She’s been angry when she sees me and walks away. She tells me, You said it would be better. I want to go home. I’m ready to leave. Let’s go. Dad and you made me stay here.

I accept blame for being Dad, but I don’t like being blamed for being me.

We met with administrators and caregivers who immediately recognized things needed to be changed because the resident mixes were significantly different in memory care and in assisted living than when Lynne moved. And restrictions for the pandemic were being eased. Their team quickly responded with ideas.

The changes in activities for Lynne have been dramatic. The new director of Lynne’s floor schedules staff to take Lynne to assisted living activities at 10 am, and 2 pm and 4 pm. Lynne mingles with more social adults, many of whom know her from her early residence. She attends daily stand-up staff meetings. She is allowed to go in and out of resident exercise classes. Lynne likes music activities, trips in vans and happy hour on Thursdays.

She walks around the large lobby where she visits with friends, the concierge, and staff. Four companion guides now guard the back doors, front doors and stairway doors for her and several residents who walk a lot. Companion guides walk with them outside for a distance before guiding them back to the lobby.

She can sit with friends for lunch and dinner in the assisted living dining room instead of the bib covered crowd in memory care. I can order meals for the two of us on the sixth-floor deck. We walk down each floor where caregivers stationed on their floors say hello because they are glad to see her again.

Lynne is more comfortable helping residents in memory care, although her help is usually brief before she wanders away. It’s her thought that counts. She walks with headphones on her head and a fanny pack with her cell phone playing Spotify music. At night I bring dark chocolate and M&M peanuts to exchange for the headphones and cell phones so I can recharge them. She is happy to see me.

I need more care. It feels like I’m sliding to hell on a steep mountain side in scree that is slashing my hands and choking my lungs. I slide faster. It’s bottomless. I never find something to grab to stop the slike. Every plan is futile, needing constant revision. I lost weight. I’m tired of my routine, my diet, my cooking ( or whatever), my prescriptions, my doctor’s visits, my apartment.

I am comforted in two support groups for Alzheimer’s caregivers. I was comforted in my first visit with a personal therapist.

One of Lynne’s friends, Nancy, an innate care giver seems to have adopted me as another father. She, her husband and Lynne’s friend invited me over after Lynne’s second seizure. She’s a spectacular cook, showing us a video of the intricate steps she took to bake a delicious upside down cake with fruit and meringue. Even better I reveled in the laughter and stories of adults relaxing around a meal. Sunday, Nancy, another friend and I drove Lynne to Green Lake for a hike and lunch. Next Thursday we’re going to Green Lake to hear a rehearsal by the Shed Boys, a blue grass and jazz quintet. Lynne’s boys are joining us.

My son and daughter are constant support, but I confess sometimes I shut them out. My son called to check in and invite me to drive up to visit them and my precious granddaughters. I just wanted silence. He tried several ways to talk but I cut him off, not committing to the visit. I couldn’t respond to another voice that day. I felt sorry for him because he cared and tried.  I felt guilty. I owe him a call. I want to visit.

Staff at Aegis care for me. They check with me. I can share with them. They are skilled. The last time the boys visited with Lynne in the lobby, she walked away to eat in the resident’s dining room where we can’t go because of Covid restrictions. The director of activities joined us and swapped stories with the twins about their caregiving experience in another assisted living facility. Lynne returned and we continued talking as if we were in a living room at home. I listened, relaxed, silent, without any pressure because we cared for each other, Lynne and me.

Every Thursday Lynne’s boys visit Lynne and linger afterward to talk with me. I love to listen to them support each other and check up on me. I love to feel them wanting to talk with me. I love that they do most of the talking.

We persist.