When illness strikes then families need to be together, says Ann Butterfield
As A former carer and now a member of the board of trustees at a respite break charity, I am in a unique position to know first-hand the importance of high-quality respite for the growing numbers of people who find themselves in a full-time caring role.
My journey from carer to trustee started when my husband Jim was diagnosed with multiple sclerosis (MS) in 1991, just a few months after our first son was born in 1990. Jim’s MS then dominated the next 20 years of our lives. He had primary progressive MS, which is a steady deterioration over a relatively short period of time. It basically means there is no let-up, and Jim had to give up work as a systems analyst at a bank within two years of diagnosis.
We had our second son and I was job-sharing so that I could look after the boys and Jim, who then used a wheelchair full-time and needed a lot of care. I had sleepless nights with my first baby, then sleepless nights with my second and went from that to sleepless nights with my husband because he needed so much care throughout the night.
It was hard going, there were about ten years of pretty tough times. During that time, we tried respite once for a weekend, but it was more of a hospital stay than a holiday and Jim was thoroughly miserable, which meant it wasn’t a break for me at all.
Then we tried Leuchie House and we couldn’t believe it – it was like night and day. They make sure everyone has a holiday – carers as well as those with a long-term condition. I had a room of my own when I went with Jim and actually slept at night. The guests are so well looked after by the staff, it is just a weight off the carers.
As the breaks were for a set time, I would start to panic at the end because I knew I was going back to no sleep.
One time I was going up to bed, taking a cup of tea and looking forward to a proper night’s sleep, and my eyes were filling because I knew it wouldn’t last once I got home. One of the staff saw me and gave me a hug. I didn’t even need to say what was wrong. They are so used to dealing with people in similar circumstances.
After that first time at Leuchie House, we had three breaks a year. I would go with Jim for one of the breaks and would leave him there for the other times. It gave me a chance to do something with the boys.
I would never have said I couldn’t cope and have my husband put in a home, but I needed to know those breaks were coming up. The staff were such fun, it has such a light atmosphere which my husband loved.
Jim had such a good sense of humour and even though he couldn’t speak, he loved the staff and their jokes.
Jim’s condition meant he just steadily got worse until he couldn’t move any part of his body. His voice went and he couldn’t swallow. We had to try and understand what he wanted by watching him blink.
But all through this time, we were determined to have a family life and normality for the children. The boys didn’t miss out on anything, from football after school to just spending time with their dad.
The respite breaks broke the year up so that we could manage in between.
I knew how essential Leuchie House was to us, so when I heard it was threatened with closure as the MS Society was withdrawing from funding respite centres, I was in denial at first.
As it became more and more real, I started getting involved with petitions and other campaigns.
When Mairi O’Keefe, who was then manager, told me she was going to try and make it as an independent charity, I was delighted and honoured to be asked to be a trustee – I had never done anything like that before.
Leuchie House reopened in 2011 as an independent charity which offers respite care for people with a variety of long-term conditions, not just MS, and their carers.
Jim died in March 2012. Since then, my role has meant that I am in a position to try and do my bit to ensure that other people have the option of the lifeline which meant so much to my family.
• Ann Butterfield is a member of the board of trustees at Leuchie House