I’d recently discussed caring for a loved one with my friend Susan recently. It’s a topic she has personal experience with, having cared for her elderly parents in the last years of their lives, but it’s not something I’ve ever been confronted with. I’d mentioned to Susan that a good friend of mine had recently become a full-time carer for her mother.
This friend of mine, who is in her mid-50s, was driving 20 minutes each way to care for her mother, who is in her early-80s. The commute, plus the expenses of fuel and rent became impractical.
Her mother has dementia, she is incontinent, and a bit stroppy (aren’t we all at some point?). My friend drives her to all her medical appointments, cooks and cleans for her. There is not much ‘time off’ and I really feel for her. I’ve watched as she’s sacrificed her own needs, including being able to socialise away from her mother, to care for her loved one. She has a brother and I know he gives his support when he can, but I wonder if she has enough support all-round.
My parents died years ago, but had I been faced with the same situation I know I would have stepped up for them. But it begs the question, how can you possibly care for others if you don’t also care for yourself?
As an outsider looking in, it appears as though carers — be they parents caring for children, grandparents caring for their grandchildren, or adults caring for their elderly relatives — are given little support unless they can afford to pay for private help. What support is available for those who are carers?
I’ve had to rely on government assistance for the past 12 years. I know that dealing with a government agency requires considerable patience, tolerance, time and persistence. The level of frustration one might face is undeniable. I’ve often been reduced to tears while waiting hours to speak to an actual person, having navigated my way through confusing websites and getting nowhere!
My neighbours, a delightful couple in their 60s, spend a large part of their week caring for their three grandchildren (the youngest of whom has just turned three) while the children’s’ parents work. I’ve no doubt they relish this opportunity, but I can see how taxing it can be to pick them up from school or daycare, bathe them and feed them before Mum or Dad arrives home.
Susan tells me about how she returned from France to look after her elderly parents. She said at the time her mother was in her late-70s and had had a cerebral stroke, which had severe implications on her memory.
“I was living in France at the time, ” she says. “Fortunately, cross-channel fares were cheap so I regularly went to see my parents.”
She said that while her mother was in a nursing home, which had been arranged by Susan’s younger sister, she had stayed with her father for a few days each week and would visit her mother every afternoon.
“My mother hated nursing home life, so eventually private home care assistance was arranged,” Susan says.
Things were going well until Susan’s father became ill and was hospitalised.
“My mother had to return to a nursing home — a different one, one that I had chosen — and I’d arranged for my father to join her there so he could recover after surgery.
“My mother had frequent memory lapses. I remember taking my father to visit her before he went into the hospital, and upon our arrival in the big reception hall, she greeted us as newcomers to the establishment. She was dressed in someone else’s clothes, her hair had been done differently and my father did not recognise her just as she didn’t recognise him.”
A few weeks later Susan visited and said they were as happy as a couple enjoying a hotel stay in a room with a sea view.
“Naturally all but the hospital stay was paid for by my parents. It turned out the nursing home also ran a home care nursing service, so everything slotted into place for their return home. A couple of years or so passed and again my father’s health deteriorated. Both of them ended up in a nursing home, one nearer to their home, which my younger sister discovered. It was the best one of all, however, like all nursing homes, it was pricey and once my father’s health improved and he felt well enough to cope in his own home, my sisters and I decided that even if our mother wouldn’t live as long by being at home, they would be so much happier spending their last days together.”
Susan arranged to live with her parents and her father would pay the overheads of her small hotel in France, which had to be closed for the duration of her stay.
“Family members or a friend stayed with my parents every fourth weekend so I could go to France to see that all was well there,” Susan says.
“My mother died six months after coming home and my father two years later. I had registered as his ‘carer’, the government paid me £40 a week, and also my pension contributions. That stopped upon my father’s death and his bank account was frozen, so to return to France, I had to take out a bank loan to keep me going for a few weeks until I could get my hotel up and running again.”
Susan highlighted that as rewarding as being a carer for a loved one is, it is also tiring. She says some are well-suited to the task and do so willingly, but there are those who are not. With the reports of aged care workers behaving inappropriately towards their patients in aged care facilities like nursing homes and hospices, I am determined not to end up in one! Perhaps now is the time to start talking to my family about who will care for me in my old age …?