Being the recipient of care was on my mind ten years ago in the first three months of 2004. My mother had just come home after several months in hospital, having had a stroke in the fall of 2003. I discovered that to need care is to be in a vulnerable place, where strangers have access to the most private places of our lives.
Recently I spent some time with the grandmother of someone for whom our agency, Christian Horizons, is providing respite. A wonderful Italian "Nonna;" she had one daughter, whose genetic disease ultimately took her life in her forties. When the time came when she could no longer care for her daughter, she went into a nursing home. With her permission, here are some thoughts she wrote about the people who cared for her daughter:
During my lifetime I have often visited hospitals, nursing homes, homes for the disabled and schools for day programs.
I would like to share my experiences and thoughts with doctors, nurses, social workers, family, friends, and those who stood close to my daughter and my granddaughter when they needed help....
The people who have to live in these places need love, attention and they need to be understood. The kindness that they are given is noted and makes a big difference in their well-being.
During the time that my daughter was hospitalized in critical condition, she told me that a male nurse had been very good, intuitive, patient and respectful. When I saw him for the first time, I told him that I would like to know how he treated his patients, and he responded that he did it with love, hoping that one day he would receive the same treatment. This touched my sensibility and heart and has made me realize that there are good people, and that many other nurses treated my daughter with love and kindness...
And here are some of my own memories:
By mid February 2004 I was already half way through the month I had come to spend in England. I had arrived with no plan but to get Mum's life back after finding her in hospital, depressed, and looking beaten at the start of the month. Within a week she was out of the hospital and home and we began recreating her world.
Each day Mum, my brother Rob and I navigated new territory, trying new things on for size and discarding those that didn't work for Mum and Rob. I made many phone calls, making arrangements for house calls for foot care, glaucoma tests, meals on wheels and the hairdresser. All the world was willing to come to Mum it seemed.
Just as we began to feel less freaked out about our lives being invaded by the Helping Hands carers who supported Mum three times a day, Mum's social worker reminded us that they were purchasing the services of Helping Hands only because there were no council carers available and that if that changed, they might switch back to the council carers.
She seemed to feel badly telling us that. It was hard for us to contemplate saying goodbye to the people we were just beginning to feel comfortable with and who knew Mum now. I had worked so hard to ensure that Mum wasn't just a time slot they had to fill. It was so important that they know her abilities and the little things, that mattered to her in a big way.
I met the first carer I worried about. I hoped that she would not be assigned to Mum too often. She was nice enough, but seemed very "slap-dash" and breezy. I wanted her to be careful and gentle and pay attention to what she was doing. I hoped that I would see her again just so that my mind would be at rest.
A few days later the social worker called again to say that the government had a new initiative called direct funding. She had approached her supervisor with a suggestion that Mum was an ideal candidate. What it meant was that Mum would be given the funds assigned to her to purchase the support she needed. This meant that Mum could continue to have Helping Hands and not have to change to new carers from the council.
As my time in Alvechurch drew to a close, Mum made her first visit to the Sycamore Club, a place she used to visit every Monday morning for tea, a chat with friends and lunch. I went with her, and enjoyed listening to the ladies, most of them in their 80's chatting with one another.
All of the pieces of life were fitting back together again. It felt so good to see Mum in the mainstream of life although it remained hard that it was so difficult for her to communicate. If she tried harder it just made it less easy to find the words she was looking for.
I prepared for my return to Canada with a sense of a mission accomplished. Even attending Mum's church had been strategic. No one knew how she was or where she was until then. She had vanished into the medical system. I felt that I was there "for" her as well as for myself. I knew that I would bring her to the forefront of people's minds and caring by my presence; that I would make her "important" to them. The result was two bunches of flowers from the church soon after she arrived home; a visit from her old friend, Trudy, and communion being served to her at home; as well as hearing her name being lifted up in prayer in the church.
Mum's friend Trudy assured me, "Don't worry, the church will look after your mum. We'll do our best."
We were fortunate in experiencing the care of the careful--those with loving hands, observant eyes and kind hearts.
But I also learned how much easier it is to be the helper than it is to need help. I learned how it feels to give up the privacy of the inner sanctum that is family--to know that the flesh and blood you treasure more than your own body, is in the hands of strangers; to know what it is to feel invaded and exposed, but have no choice; to be dependant and vulnerable--and to have to trust where trustworthiness is not guaranteed.
And that is why I hope that people feel that we ''stand close" with them; as the grandmother put it; when they need our help.