Claire’s Story

“Life has changed for us considerably since Mum was diagnosed with CBD. Mum had to leave her two bed Victorian home in Surrey for a more accessible house. Her partner of ten years couldn’t deal with her progressive disability and decided ‘he wanted his life back’ so left her. At the time I was working in London. I altered my working hours so I could support Mum more. Eventually, we decided to sell the house and relocate to Milton Keynes, where I had some close friends.

“We found a house, but it needed a lot of work to make it suitable for Mum. I took a two-month sabbatical from work to focus on getting the house ready, complete with ramps and all the things you don’t ever think about when you are able-bodied. At the end of my sabbatical, it wasn’t feasible for me to return to my job in London. Of course, I miss a lot of the perks of working, but my priorities have changed hugely.

“In April, Mum had a nasty fall in the shower and fractured her spine. She has been in a wheelchair ever since. That is the point we decided to get carers in to help, despite her initial concerns about strangers coming in to look after her. “Mum naturally wanted to keep doing as much as possible, but I wish we had known more about the different stages of the condition. My advice to anyone now would be not to resist using a wheelchair and not to think about it as the end of the road. Looking back, had Mum used a wheelchair just when she needed to, I think it would have saved her from being in a wheelchair permanently.

“It was only in January we received a diagnosis of CBD, after 11 years of Mum experiencing symptoms. She would be constantly told she was making it up. Her GP described her as ‘anxious’. A surgeon put her symptoms down to her not wanting to accept that she’s simply getting old. Different doctors told Mum different things, including at one point a diagnosis of Parkinson’s.

“It is quite shocking how Mum deteriorates from one week to the next. Her memory is still good but she sleeps 60 per cent of the day and is often confused when she wakes up. She’d ask when Dad is coming home, but he died when I was 21. The change in personality and temperament is the hardest thing to deal with, it really upsets me. In a way I prefer helping her physically because the mental side is very difficult, she can get very down.

“We have had so many issues with carers. Most have just not understood her condition and why she can’t move her leg. I think one of the challenges is because the care industry is so badly paid no one thinks of it as a career. Many carers don’t understand Mum has a neurological condition. We did have one wonderful carer, but she left to become a paramedic. It made such a difference to have someone who got on well with Mum and who I could rely on.

“At the moment I am doing 99 per cent of the care and that can be quite stressful. I get Mum out of bed and transfer her onto the shower commode. It takes about an hour to get her washed and dressed. The night times are getting harder. I don’t know if it is a side effect of the new medication she is on, but she needs to go to the toilet at least six times during the night. It is exhausting for both of us. If I do go out we need to get a waking night carer at £230 minimum to sit downstairs for when Mum needs help.

“I do feel selfish sometimes for wanting a life but to have a life and do things I enjoy we need to have carers we can rely on. This is something we’re still working on. Mum feels guilty I am caring for her. I feel guilty about wanting to go out sometimes. But, at the same time, I always want to look after Mum. When we have good carers again, we’ll be able to go back to having a typical mother/daughter relationship, but at the moment in the absence of extra support, I am her main carer, best friend and daughter.

“We have always both been keen travellers and I have been adamant that we try and maintain a good quality of life. We went to Amsterdam in September on the direct new Eurostar route. Accessible Netherlands arranged the equipment we needed for the room and it ended up being a home from home. We try to do as much as we can. Mum has had a flying lesson and went sailing. We had a lovely day out recently where we fed the penguins. Mum has always found it hilarious that when I was younger I called them pupuins. It’s important we have fun and focus on what Mum can do and enjoy.

“For years we felt lost in the system with no one to turn to for information. That changed once Mum was diagnosed. That evening we found PSPA online. They put us in touch with our local neurological Nurse Practitioner who has been a huge help and given us names of people to help with adaptations, equipment and other professionals for support.

“CBD has changed Mum. She was so bubbly and outgoing, always turning heads. She loved life, was always off climbing mountains and swimming in lakes. I know she will never come to terms with the fact that she can’t do those things anymore. It’s frustrating to watch how she is treated by people who didn’t know her previously. She’s only 67 but she’s often patronised and spoken to like she’s way older, or worse still, they will speak to me instead.

“It is very lonely to be an only child with no family to rely on for support. However, I am just happy I am in this area and I have close friends nearby. Through my Mum’s experience, I really value the importance of friendships.

“Despite everything that has happened I am happy. I have discovered a lot about myself and what I truly want to do with my life. Of course, my life is very different from when I was working in London, but the London scene doesn’t appeal to me as much anymore. Now I know I would like a caring role, or perhaps work for a charity. The situation I am in has changed me for the better. I have also met some fantastic people and I’m so much more appreciative of my own physical health and wellbeing.

“I started running and did the couch to 5K. I’m now training for the London Marathon next April for PSPA. Another thing I perhaps wouldn’t have done if my life had been different.”