Nevertheless Dementia, We Persist

Short Short Story 1810 words

Late one Monday afternoon, Luna, the Director of Operations, called about an idea she wanted to share with me immediately — Lynne might be better served in Life’s Neighborhood for three reasons. She would be safer, more social and more helpful.

That was a breakout moment for me. I had avoided Life’s Neighborhood.

Life’s Neighborhood is the memory care unit on the second floor for residents who need more secure housing to keep them safer, and more care givers to assist them in their daily living. I accepted it as necessary in the final stages of dementia when it was absolutely necessary. When I discussed long term planning costs with several directors, they assured me some residents never move in there.  

So Lynne and I had ignored it, but its specter perpetually lingers. When we get on the elevator we cannot press floor 2 unless we key in a secret code. We see residents enter and we don’t see them again. Residents don’t come out unless accompanied. Nurses, medical response teams, and hospice volunteers get off at that floor. Meals in heavy food carts for the residents are pushed through the dining room, the lobby and onto the elevators. When we walk down the stairs the second floor has a pad to key in the secret code to unlock the door. Lynne would often warn me I couldn’t  go in that door.

Luna surprised me. I was desperate. And I trusted her. “Tell me more.”

Luna’s primary concern was safety. She mentioned incidents we’d seen or could easily imagine. Lynne picked up broken porcelain with her fingers. She smeared toothpaste on her face as skin cream. Luna worried she could harm herself a number of ways.

She said Life’s Neighborhood residents were more social with each other because there is a dining room and a gathering place with seating and tables,. It has an outside courtyard. They had one single apartment and possibly another with a roommate if that could be worked out. Lynne could keep Schmitty. Lynne could leave with escorts, including, Luna believed, to attend CrossFit.

I was relieved we could explore options. She would discuss it with staff. I was giddy when I texted Pam and Keith: “What time do you guys have where we could have a video chat tonight about Lynne?” They worried it was urgent and were excited to investigate. Tuesday, Kim, the Marketing Director set up a virtual tour for the next Tuesday.  

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The next morning, I couldn’t help myself and planted seeds with Lynne about different living arrangements. We were exercising on the soccer field with our masks on. Anna, her exercise trainer, said Schmitty is racing around the apartment when people come in and tries to head out the door. He is friendly with others. I suggested  to Lynne we needed to get him a bigger apartment so he could run around more. He could also meet more people. She listened.

Lynne hadn’t been outside for days. The hard part was not having anyone to talk to. I suggested maybe we should get her a roommate so she’d have someone to talk to, and Schmitty would have another friend. She listened and nodded her head. Anna supported the idea. It was encouraging to realize she had participated in staff wide conversations supporting the move to improve Lynne’s moods.

I sent Luna and Kim a note alerting them that I had planted ideas. I wanted to find out if my suggestions would be helpful this early, or if I should keep silent about raising Lynne’s hopes before plans were flushed out. Kim responded quickly.

 “BRAVO!!!   So….did Lynne have a response to those suggestions?   Because your talk with Luna sounds to me like it was hitting all of the notes we have been hitting in our conversations here at Aegis. Lynne is an active and social person, and she thrives with company… I think you are on the right track Jim, and I am curious what Lynne’s thoughts about this will be..  And:  keep in mind that we are very flexible…IF we tried this and it doesn’t work well for Lynne, we can pivot.”

Things were going well.

After I settled into bed that night, Charlie, the concierge, called me from the lobby with Lynne by her side. Against the rules, Lynne had escaped to the lobby. Lynne was really depressed. She rarely says much when she’s depressed. I went all in. I guess I was hoping to get back to sleep.

I told Lynne that I thought that the apartment she has was the wrong thing for her now. She needs to be with more people. She needs to be safer. She needs to be someplace where she could go outside. I asked her if she’d ever taken a tour of other places to live in Aegis , deliberately avoiding the words Life’s Neighborhood.

She said, “No.”

“Well, I think we should look for another place for you and I’ll see if I can have Luna give you a tour of where you could live instead of in that apartment.”

“I think Kim could help, too.” Lynne was on board and adding to the team!

I confessed my conversation to Kim and Luna, “I’m working pretty hard to take complete credit for this..🤩 Anyway I think she might be interested in taking a tour since I planted the idea that Dad isn’t happy with her being alone in that apartment. I hope that strategy works.”

Kim had my back, “Jim – you are an incredible dad. Luna and I will get on this tomorrow and I’m super excited to see how it goes for Lynne. Luna has also worked out a plan to have Lynne working in the garden and integrating with the residents in Life’s Neighborhood with a mission.”

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The rest of the week was routine while Keith, Pam and I looked forward to the virtual tour. Kim hosted it with the King, the Aegis Director, Luna and others who gave a video through the floor and rooms. We were agreed the options for her residency. The tour wiped out my images of catacombs and replaced them with well lit spaces for people to gather. We agreed to make it happen.

After midnight the night of the tour, I couldn’t’ get to sleep until I wrote this in my journal, grasping at my feelings and repeatedly going over everything.
“I think I am tremendously relieved that we have a solution for Lynne to move into a final stage that will be much better for her. I feel relief, a load lifting off me, almost a euphoria that the next stage is in sight and that resolution is under way, And maybe I just can’t face the rest of the story right now and feel guilty at how I feel.
“I am grateful for Aegis staff for suggestions for Lynne. Kim, Luna, King all believe Lynne is a candidate for Life’s Neighborhood – a “better fit.” Book shelves in the room for books she reads constantly. More locked cabinets to put away harmful or toxic containers she might ingest (lotions, cat food, etc.).
A potential roommate is again described as sweet, but limited to getting in and out of bed into a chair or wheel chair. Lynne would have less clothing, each would have a closet, and we should learn to be comfortable with her sharing things with other residents, like books, clothes, etc. Everything would be labeled. A cat wouldn’t be a problem. An outdoor courtyard designed with a wall painted as old Madison neighborhood with a mural of Mt Rainier on the wall. A visual carpeted pathway gives cues about where to walk from the dining room out to the courtyard and in another door and around the hallway and back to the dining room. Exiting from either of the possible apartments rooms gives a view of the main area where tables and chairs and activities exist.
“King and Luna indicate Lynne would be granted more than the normal ability to leave the floor with an escort to go outside, eat in the main dining room, go to CrossFit, attend activities with all the other residents. They think she is overwhelmed by the amount of space available in the lobby downstairs.
“We felt now is a good time to try it because Lynne is confined from the Covid-19 virus and there is more mobility on that floor for Lynne. Four staff on the floor at all times can respond more quickly to Lynne.
“I told them Lynne has a frightening image of Life’s Neighborhood—secure codes in elevators and stairs, so they need to be real sensitive to initiating her into the space. She’ll say,. “You can’t go there.” “You go in, you don’t come out.”
“They thanked me for that tip. They have techniques to show her the door with the secure keypad and see her reaction. If bad, they may show it to her the next day and hope for a better reaction. They need to see if the two residents mix at group activities. They need to talk with the family of a possible roommate. Lynne may need an apartment of her own, 250 sq. ft., smaller than what she has to limit how much she scatters. And she will have the freedom to walk out the door to socialize. I think everything is in place to make this happen.”

What could go wrong? I went to sleep.