Community in Long Term Care

I learned the importance of a senior community in long-term care – a place that initially struck me as institutional and sterile.

My Mother was placed in a home after a severe head injury prompted her dementia. Link that I was to her former life, I remained with her as long as I could on day one. The unease in her eyes and perhaps some realization that this might be her last stop unnerved me. Coming to terms with that reality frightened us both.

Shopping therapy followed, and I found myself searching for everything I thought would transform her room. My goal was to make her room into a place representing who she had been in her former life. Lover of laughter, artistic and creative to her core, whimsical, devoted to gardening, cooking, art, and the great outdoors were all her attributes.

Oil paints, an easel, paintbrushes & an artist’s smock were the first items on my shopping list. She would want for nothing in my attempt to ease the guilt of my placing her into institutional care, even though I knew it was the only option.

A Community Was Forming

As time went on and I lunched with her in the dining room, it was apparent that she knew many people, and they, in turn, knew her. They would greet one another with a smile, a distinct wave, or some unique hand gesture.

Although her dementia meltdowns seemed more frequent with me, they happened less often with her private caregivers.

A community had formed around my Mother. She had the odd boyfriend. Private caregivers applied her make-up, curled her hair, and accompanied her to many in-house events. They dolled her up and took her out. The mall at Christmas was a favorite, or out lunching at some local restaurant. Musical performances hosted by the home found her still attending Zumba sessions at age 93, wearing her signature earrings and grooving to the music.

There was a rapport forming between the private caregivers, some of the staff, and me, and we all became extended family. Other residents formed part of that same community. Everyone struggled to live out this last chapter with dignity, accepting of one another, no matter the malady.

Acceptance

Accepting the reality of her dementia was difficult for me. By observing other residents’ reactions, I learned what they already knew and practiced. On a bad day, my Mother’s friends would ignore her behavior, treating it like any other day, judgment withheld. She was valued nonetheless, accepted as she was, and forgiven.

Community Can Take On Many Forms

Sense of community saw my Mother warmly welcoming her kleptomaniac neighbor as she cased my mother’s room looking for what she might filch. This kleptomaniac would flush any unacceptable ill-gotten gain (as in a blouse that didn’t fit) down her toilet. If she plugged her own toilet, she would flush it down my mother’s – or at least try. Black comedy was watching an overwrought PSW frantically plunging yet another plugged toilet.

In this long-term care community, there was the expectation that “the trains would always run on time.” Meals were served at regular hours, and servers knew my Mother’s food preferences and habits (she hated to be rushed through a meal). Medication was dispensed on schedule, and clean laundry appeared in the closet on designated days of the week. Then there was the in-house hairdresser, knowing exactly how my mother liked her hair styled and handling her moods on a bad day.

It was observing one spouse still devoted to the other as the wife slipped into dementia. The husband remained at her side with his own set of medical issues, acting as though everything was normal. They still held hands and socialized.

A sense of community was my Mother referring to the staff who attended to her as “my servants,” and their taking it all in good humor.

Courage

Bravery and courage are words that come to mind when I recall long-term care. It was seeing the same faces daily, valuing what life remained and bravely living out their days as best they could. They were all in it together in this space they now called home.

We, the custodial family caregivers, formed a sub-community by sharing a bond of understanding about how precious and challenging this last chapter could be. We kept showing up nevertheless, helping where we could, being supportive of one another, sharing our concerns, but facing it.

A Sense of Belonging Matters, Always…At Any Age

Community matters for so many reasons. In my Mother’s situation it came at a time when I’m sure she felt displaced with all the familiar landmarks gone. It’s important to feel you belong to someone or something, that you are a member of a group. Social connectedness to other human beings, most especially in the senior years, is imperative. We are all socially inclined, even in long-term care, where love still flourishes, as do all the other human emotions.

It struck me that when my Mother died in 2014 – not only had I lost her but also her community which had become my own. It was a place where I commiserated with staff members about her status, socialized with other custodial family members, and discussed the challenges we all faced. I missed the relationship formed over the years with certain frontline staff and with the private caregivers employed to augment my mother’s care and provide her quality of life. Although stressful, I realized that custodial family caretaking is something I would never regret.

I miss my Mother to this day, and for some time, I missed the responsibility that introduced me to our community in long-term care.