Robin’s story

Robin cares full-time for his wife, Hilda, and their adult son, Jamie. Here he explains why short breaks at Leuchie are essential in enabling him to carry on in his caring role.

"Hilda and I had been married for three years by the time Jamie was born. We knew very quickly that something was wrong but we didn’t know what until a few weeks later when a consultant neurologist visited us in the neonatal unit.

He made the devastating diagnosis that both Hilda and Jamie had myotonic dystrophy, a genetic condition that causes progressive muscle weakness and wasting. In addition Jamie was found to have learning difficulties.

Over the next 15 years, we did everything we could to make the best life for Jamie and to manage Hilda’s condition as it progressed.

By the time she was 45, Hilda had given up her job as a primary school teacher, while I’d been made redundant and had gone on to do an accounting degree. It was on my graduation day that Hilda fell for the first time. For me, this was a sign that things had progressed catastrophically.

As her balance became more severely affected, she needed more care herself and became less able to help me look after Jamie.

Finding myself in the role of full-time carer was a gradual thing, almost invidious. It takes a while to realise how much it has taken over your life.

I know I’ve become quite isolated as a result of being a full-time carer. There’s very little time for friends and hobbies. I’m a member of a sailing club and still enjoy being involved in that in the summer, but all three of us go.

We first came to Leuchie House in 2014 on the recommendation of our support worker. She could see how exhausted I was. On that first visit, to help Hilda settle in and get used to Leuchie, I spent three nights with her, staying in the carers’ accommodation. Since then she has had three or four short breaks a year, usually for seven nights, while I tend to have a break separately, and Jamie goes for respite in Edinburgh.

For me it’s about getting a chance to recover. You don’t realise how tired you are until you stop. For the first three days that they’re both away, I will sleep almost continually. It’s the only time that I can really switch off and get the chance to do things I can’t usually do. Having the breaks booked in for the year gives us something to look forward to and helps keep me going.

While Hilda is at Leuchie House, I can relax knowing that she is getting good quality care and that she’ll have a good range of things to do. Leuchie has a great sense of community and it’s a safe, comfortable environment for her. It also allows Hilda to be Hilda without having me tagging along, as she normally does. She is able to do a lot of the things she loves, like painting, and arts and crafts. She also likes being able to get out and about. She’s even flown in a microlight while at Leuchie and rekindled her love of horses with a carriage-driving trip.

I know it’s important to Hilda too that I get a break and that she sees me more relaxed afterwards. We don’t have any other family now so Leuchie has become our family. We’ve both gotten to know the staff over the past few years and every time we come back it’s like visiting old friends. The staff always look out for us.

Leuchie House has really made a difference to me and to Hilda, and helps me to keep giving her and Jamie the best care I can."