“It’s so incredibly isolating,” my friend Melanie said recently about the time she was caring for her mother. “Even though we had great hospice nurses, there was often time when I couldn’t talk to anyone about my experience.”
Melanie helped her dad care for her mother, dying of cancer, through the end of her life in her own home. I remember talking to her one day about her drive time from her home to her parents, and how she had spent the entire drive home that week (over an hour each way) composing her mother’s obituary. Difficult, but so very important to Melanie to write the final chapter – the summary, really – of her mother’s life.
Like so many family caregivers, Melanie balanced her children – one at college and one still living at home – her family tasks and helping her parents. She talks of feeling too tired to even carry on a conversation after spending a day or two immersed in her mother’s care.
Melanie is a bright, well-educated woman who comes from a family with good financial and emotional support. For her, caregiving was isolating, exhausting, emotionally draining. What must the person with family, financial or emotional stresses in addition to the caregiving experience?
Another friend, Mary Ann, runs a local agency that offers family caregivers relief through a program called “Respite.”
The program, run by our local county and funded through state dollars, doesn’t ask how much money you make. It is available to family caregivers at any economic level. It provides someone to stay with your loved one while you take a break. It even pays for a massage, if that is what relieves your stress best.
“We all have a breaking point,” says Mary Ann. “Anything we can do to help someone avoid that breaking point is extremely valuable to the caregiver and to the person receiving care.”
Mary Ann knows. She cared for her grandmother with dementia; now she cares for her mother who has advanced memory loss. Even though her mother lives in a small care home, Mary Ann is involved in the day-to-day care. Ask her about her mother on any day of the week, and she’ll choke up as she shares – just a little – the pain of watching “mama” slip away.
And so Mary Ann encourages all family caregivers to get relief any way they can. She actively looks for ways to encourage, support, train and relieve the most exhausted caregivers, before they simply say, “No more.”
It is isolating, exhausting and draining, as Melanie points out.