Caregiver stress, the truth and the hope from small acts of kindness (by Femada Bibi Shamam, CEO of TAFTA in Durban).
The depth, complexity and stark reality of caregiver stress became so real to me as I walked through the community with one of our caregivers. Compassion on two legs with a larger-than-life personality would probably be the apt description of our *Mary. A description of the gregarious, unorthodox and colourful Mary would be reflections for another piece. Today I want to share my thoughts on the world of deep Carer stress which Mary reminded me of. We visited six of the seven people Mary visits for an hour every day. They live in close proximity and she walks to each of their homes assisting with a variety of tasks to support them. Four Elders who were visited have people who provide care to them at home and Mary’s assistance supplements the care they provide. As I witnessed the joy Mary took in helping, it almost seems inadequate to describe what she does as supplementary. She is the lifeline to the people in the four households.
The lived experiences of the informal caregivers having to cope with disturbed sleep patterns, daily confusion, soiled linen, anger outbursts, total hopelessness and frustration only served to bring home how Mary’s care and support are as important to the caregivers, as much as it is to the Elders. Her practical assistance, unusual wit and loud laughter deliver to the household a sense of calmness and reinject a sense of hope for better moments. Listening to the frustration of a daughter who has supported her mother who survived a massive stroke which resulted in the paralysis of the left side of her body, for a year while still trying to secure permanent employment to support her two children, the youngest being 2 years old, highlighted the complexity of the stress experienced by caregivers. As the daughter described her day, it was dif cult to ignore the underlying anger and total helplessness she felt. Mary continued to listen to the venting of the daughter while being attentive to the elder.
In the rare moments of silence, Mary managed to get in a question or two about whether the church had visited and whether the exercise was continuing. No sooner was the hour up and we were off to visit the next elder where Mary assists with some domestic duties and soaks and massages the feet of Mr R. On that day, he barely uttered two sentences. Signs of dementia were evident and Mary’s visit was an opportunity for Mr R’s wife to share her challenges of that day. Mr R. was having a bad day (Mary was convinced that the weather affects her Elders. “Cold days, are bad days” she explained). Mary massaged Mr. R’s feet quietly while Mr. R scolded her “Why so hard?” referring to her massage. Mary quietly apologized and continued. Seeing Mary react this way was completely out of character. Mary was loud, she was generous with her words and actions but she knew what would bring calmness to Mr. R. I was in awe of this lady. After the hour, Mrs R’s mood seemed lighter because she had spoken to Mary. Mary’s mere presence helped.
Mary experiences this every day. At every home we visited, she demonstrated her care, compassion and commitment to help, by not only undertaking her tasks well but by supporting the caregivers and doing the little extras for each person in the family. It was a fruit for Mrs A’s grandson, newly knitted socks for another and the promise that she would bring a book called ”Finding Peace” for Mrs A. While being humbled by Mary’s generosity of spirit, I was slightly ashamed that I was so consumed by my own challenges. This time with Mary gave me perspective, it gave me insight and left me with a deep sense of gratitude. More importantly, it has ignited an urgency to do more to support our care partners in their caregiving roles. The four hours of walking through the streets of the community practically demonstrated how Tafta makes dignity, growth and a meaningful life a realistic prospect for all Elders. It reaffirmed our purpose.
(Thank you Femada for sharing this…truly walk a mile in someone else’s shoes.)