I was born and grew up in Cornwall, moving away to university at 18 years old. After university, I worked in project management and quality assurance for a number of years, before moving back to the South West in 2003.
In 2013, I took on what has probably been the most challenging role of my life so far, helping to care for my mum. I lived over 100 miles away from her which made things very difficult, but she really didn’t want to move away from the county she’d lived in all her life so we had to make it work.
My mum was diagnosed with Multiple Sclerosis when she was 57 years old. Over the next 12 years her symptoms got progressively worse until she was unable to walk, relying on a wheelchair to get around. By the spring of 2013 she was in the position where she needed the help of two carers, visiting her four times a day in order to maintain her independence and remain living at home. Up until this point my mum had managed her own affairs and arranged all her own care and other needs, but in the spring of 2013 she got a nasty urinary tract infection. She had to be hospitalised and this was when things changed for both of us. I realised then that she hadn’t been coping very well at home for a while, she’d come to rely heavily on a close friend to do more and more for her. From then on, she leaned more and more on me to help her on a day to day basis with organising her finances, her care plan, food shopping etc. I lived 100 miles away so this was mostly achieved over the phone, liaising with two of her close friends to get their help, and with visits as often as I could for things like appointments or assessments as well as normal day to day things.
In early 2014, my mum was diagnosed with vascular and MS related dementia, this compounded the problems that my mum already faced and made helping her from a distance incredibly hard. We managed for another 2 years until my mum stopped recognising the ringtone of the telephone. It was at this point that the inevitable conversation needed to be had. I sat down with my mum and had the hardest conversation I’ve ever had with her about whether it was safe for her to stay living at home on her own. We both got emotional and upset, but she admitted that she didn’t want to live on her own anymore. We talked over the options and she agreed to consider residential nursing care. It was a big relief to me as her care provider had already said that they didn’t feel that they could carry on giving her everything she needed at home. The fact that she had reached that conclusion herself made the decision easier for the whole family.
My mum needed nursing care, so this cut down the number of options open to us. I researched all the options to find the home that best suited her needs and arranged the necessary care funding, which was a battle but was successful. A few weeks later she moved in, it was an incredibly hard day for both of us, but my mum was nothing if not brave and she took it all in her stride. She settled in well, and the 24 hour nursing care was exactly what she needed as the dementia took hold. However, her health deteriorated over the next few months and she passed away only five months later.
After my mum passed away I began to think about how many other people must be in the same position as my mum and I. My mum wanted to remain living independently for as long as possible, but without my help she would have struggled to do that for as long as she did. When it became apparent that care at home was no longer possible, I had to navigate my way through choosing a nursing home, as well as organising the funding for a place. This was incredibly stressful and very time consuming. There maybe other people in a similar situation to us, who don’t have someone that can help and support them. I think it is very easy for people, especially the elderly, to fall through the cracks in the current system.
My aim is to help as many people as possible, young or old, to stay visible to the authorities, and to get the help and support they need and deserve to make their lives easier. I think what I admired and respected most about my mum was how incredibly strong she was, how determined and brave she was and that despite what life threw at her, she just kept going. She fought hard while she could to get the care she needed but once she was unable to do that for herself, I needed to step in and help her. If I had not acted as the link between my mum and the other parties involved in her care I know that her health would have suffered more than it did and she would have needed residential care a lot sooner.
I appreciate and understand that not every family has someone that can do that, which is why I want to make use of what I have learnt to help other people.