Don's story: Caring for a loved-one with MS

Don, 86, is a carer to his wife Sandie. He shares his experiences of caring for a loved-one with MS.  

After many years working in the NHS, I decided to take a three year medical acupuncture course and eventually opened my own practice in Peterborough. One day in 1988 the local pain clinic referred to me a young woman with MS. She sat in my big chair in front of me and I took both her hands in mine, “What is the best thing in your life?” I gently asked her. “Going to bed at night,” she replied. “And the worst?” I asked. “Waking up in the morning and finding that I’m still alive,” she replied quietly.

That was 30 years ago, and as I write this she is sitting smiling with me at the memory. So how did we get here?

I treated her weekly for two years and once a fortnight took her up to the school of nursing to teach the students how to deal with disabled patients. This got her out of the house and allowed her to meet people again. At the end of two years she was walking better and had regained a sparkle in her eye. But then her husband changed jobs and they moved away to Norfolk and apart from the occasional phone call to see how she was getting on, I saw no more of Sandie until 2006 when she informed me that her husband had died of a heart attack, and she was returning to Peterborough to be near friends, and would I treat her again? Meanwhile my wife had also passed away.

When Sandie returned to the city, she was paraplegic and very withdrawn. I visited and did my best for her. The visits became more frequent, and then quite out of the blue we fell in love!

We were married on my 75^th birthday and I became her full time carer. Twelve years later, after all that life can throw at us, we are happy together. She needs me as much as I need her, but it’s hope that keeps us going. Not false hope of a cure, but the hope that today will be better than yesterday, and that tomorrow will be better than today. 

Life has thrown many problems at both of us. Sandie has experienced situations requiring surgery and admission to hospital, as have I. Caring for someone with MS, particularly on your own, can be a stressful and lonely task. The old phrase “Who cares for the carer?” applies at these times. If the carer gets no moral support from whatever source, then it can be like the old song of the Miller of Dee:  “I care for nobody no not I, ‘cause nobody cares for me!” And this applies to people like me who need someone to talk to.

 She needs me as much as I need her, but it’s hope that keeps us going. Not false hope of a cure, but the hope that today will be better than yesterday, and that tomorrow will be better than today!

A friend sent Sandie and me a brochure when she felt we needed help. It had a lovely picture on the cover of a well-dressed laughing old gentleman in a wheelchair gratefully accepting a glass of orange juice from a beautifully dressed smiling young lady in a white uniform. They sat overlooking the rose garden, all the flowers in bloom with the sun shining. No, it’s not like that, at least not in my twelve years’ experience! There’s a bit more to caring than that.

Love is what underpins my care of Sandie. It can take its toll on relationships. Day becomes night, pain and spasm, bowels and waterworks, catheters and pressure areas take over the conversation along with multiple medication programmes, and the only thing left is hope that both of you will make daylight and she will be more comfortable for your efforts.