I learned the importance of a seniors community in long-term care – a place that initially struck me as institutional and sterile.
I had placed my Mother in this home after a severe head injury had prompted her dementia. Remaining with her as long as I could on day one, link that I was to her former life, I saw the unease in her eyes and perhaps some realization that this might be her last stop. Coming to terms with that reality frightened us both.
Shopping therapy followed and found me searching for everything I thought would transform her room into a place that would represent who my Mother 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.
Oil paints, easel, paint brushes & an artist’s smock were the first items on my shopping list. She would want for nothing in my attempt to ease the guilt in 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 would lunch with her in the dining room, it became 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 and were sometimes non-existent with private caregivers.
A community had formed around my Mother. She had the odd boyfriend and private caregivers who applied her make-up, curled her hair and accompanied her to many inhouse events. They dolled her up and took her out to the mall at Christmas or out to lunch 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.
A rapport developed 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 struggling to live out this last chapter, in care, with dignity, all accepting of one another, no matter what the malady.
Accepting the reality of her dementia was difficult for me. It was by observing the reactions of other residents that I learned what they already knew and practiced: that 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
Community saw my Mother warmly welcoming her kleptomaniac neighbour as she “visited” my Mother’s room looking for what she might next filch. This same kleptomaniac would repeatedly flush any unacceptable ill gotten gains (as in a blouse that didn’t fit) down her toilet – or my Mother’s – or at least try. Black comedy was calling the overwhelmed and overwrought PSW to report yet another plugged toilet and that same PSW struggling with the plunger shreiking: “Suzanna! – What did you flush down this 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, 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 defined days of the week. Community was the in-house hairdresser knowing exactly how my Mother liked or didn’t like her hair styled and handling her moods on a bad day.
It was observing one spouse still devoted to the other as one slipped into dementia while the other remained at their side with their own set of medical issues, acting as though everything was normal while they held hands and socialized.
Community was my Mother referring to the staff who attended to her care as “my servants” and their taking it all in good humour.
Bravery and courage are words which come to mind when I recall longterm care. It was seeing the same faces daily, most valuing what life remained, living out their days as best they could, bravely…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, 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 and have some social connectedness with other human beings, most especially in the senior years. 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 – that not only had I lost her but also her community which had become my own…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. I realized that custodial family caretaking, although stressful, is something I would never regret.
I miss my Mother to this day and for some time I missed the responsibility which introduced me to our community in longterm care.