I learned about community and its importance in a long-term care facility – a place which initially struck me as institutional and sterile. I had placed my Mother in this home after a severe head injury had prompted her dementia. I remained with her as long as possible that first day, link that I was to her former life, seeing the unease in her eyes and perhaps some realization that this might be her last stop. Coming to terms with that reality made it frightening for us both.
Shopping therapy followed and found me searching for everything I thought would transform that longterm care 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. 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 to me that she knew many people and they in turn knew her. They would greet one another with a smile, 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. Then came the realization that a community had formed around my Mother. She had the odd boyfriend and private caregivers who applied her make-up, curled her hair and acompanied her to many inhouse events, sometimes to the mall at Christmas or out to lunch as a 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.
On a bad day my Mother’s friends ignored her behaviour, treating it like any other day, judgement withheld; she was valued nonetheless and forgiven.
Community can take on many forms
Community saw my Mother warmly welcoming her kleptomaniac neighbour as she dropped in to case my Mother’s room 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 PSW struggling with the plunger shreiking to the kleptomanic neighbour: “Suzanna! – What did you flush down Hannah’s toilet ??!”
Community was the expectation that “the trains would always run on time” – that meals were served at regular hours, medication was dispensed on schedule and clean laundry appeared in the closet on defined days of the week. Community was being assured that the in house hairdresser knew exactly how my Mother liked or didn’t like her hair styled and knew how to handle her moods on a bad day.
Community was observing one spouse 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 with other residents.
Community was my Mother referring to the staff who attended to her needs as “my servants” and their taking it all in good humour.
Community Supports and Courage
Bravery and courage are words which come to mind in this setting. 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 forming a sub-community sharing a bond of understanding as to how precious and challenging this last chapter could be; showing up nonetheless, helping and being supportive of one another. Sharing and 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 our senior years. We are all socially inclined, even in longterm care where love still flourishes as do all the other human emotions.
It struck me that when my Mother died in 2014, that I lost her community which had become my own as well…where I commiserated with staffmembers about her status, socialized with other custodial family members and discussed the challenges we now faced. I missed the relationship formed over the years with certain frontline staff and with her private caregivers employed to augment her care and provide 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 and for sometime I missed the responsibility which introduced me to our community in longterm care.
I would welcome comments and any insights from others who have made this journey…