Kerry cares for her 18-year-old son, George, who was diagnosed with Duchenne muscular dystrophy at the age of 8, a life-limiting condition that requires full-time care. She speaks about how adapting to his diagnosis has been a complex process, and how a life-changing disorder has affected their entire family in various ways.
Kerry and her husband John are both carers to their oldest son, George, who needs round-the-clock care due to his condition. Duchenne muscular dystrophy is a progressive condition diagnosed in childhood. It causes all the muscles in the body to gradually weaken starting with the legs, and the ability to walk is typically lost by the age of 12 years old. When Kerry and John were told by doctors at Great Ormond Street that George had the life-limiting disorder, it was a massive shock to them both:
“We were completely shocked. It’s very hard to be told your son’s not going to live long-term.”
Kerry had a successful job in banking but had to stop working three years after George’s diagnosis to be able to keep up with his care needs, as did her husband John. She had always intended to return to work, but with George’s changing needs, it became too overwhelming. Her admirable volunteer work with different charities supporting the funding and awareness for Duchenne muscular dystrophy keeps her engaged and provides some routine away from her caring role. However, the financial strain and lack of support with this has greatly impacted their lives.
“At age 12 he couldn’t walk at all and needed help getting anywhere. It brings different challenges as he needs to be hoisted and helped with lots of things.” This has unfortunately had a negative impact on Kerry’s back problems and means that she is often in physical pain and discomfort.
Kerry’s younger son, Jack, also has autism, ADHD, and sensory processing disorder, which is something the family has had to navigate throughout George’s experience since being diagnosed. It’s often challenging when two or more children in the same household have differing needs, as Kerry has learned over the years when trying to get both boys to get along and understand each other: “It’s important, but difficult, to support them both with understanding each other as brothers with different needs.”
Kerry explains how it was almost impossible to find any support for herself as a parent carer, especially in the beginning when George was first diagnosed. It was a mentally draining time for her, particularly without the normalcy of everyday life after she stopped working and less time for social events and activities, “I thought, I’m going a bit crazy here. You find that you become more and more isolated from doing the things you want to do. Friends who you thought were friends come and go. There’s a loss of you; you become just a mum or a carer.”
It wasn’t until she received some help from a hospice organisation, who put her in touch with Carers First, that Kerry finally began to feel some recognition and was shown exactly what support was out there for parent carers like herself. She shares how going to regular groups in and around Rayleigh has encouraged her to be more social and take a break when needed, “The groups are really supportive and friendly. Seeing the regular people, hearing from the speakers, and going to a diverse group in ages and activities is really good for me. You find new friendships as well.” Carer Support Adviser in Essex, Claire, has even supported Kerry with getting a grant for more support in her caring role.
Kerry has gotten better at making time for herself outside of caring for George. Little things like going to the gym give her that social interaction and sense of accomplishment that she misses since leaving work. Meeting other parent carers has helped her more than anything, “talking to others in the caring role, or other mums, is really great to have. People that go through it, get it.”
Kerry would like for policymakers and organisations designed to help carers to know that “care and support is not a one size fits all.” She shares how she and her family did not receive the proper support when George was initially diagnosed. The ongoing battles for services and support are endless and exhausting. She wishes for other carers going through similar situations to experience a more positive approach to support.
While becoming a carer has been extremely tough and demanding in some ways, Kerry believes there are some positives to her situation and that it has made her stronger,
“Caring has taught me to fight for what’s right. It’s made me more resilient and determined to fight for what’s needed.”
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