Catherine is the author of the first of two books in her series “Dementia Care at Home”. She cared for her mother for over a decade at home, from diagnosis until her mother sadly passed away in October 2020. Catherine’s extensive experience of day-to-day practical care, coupled with formal study, has shaped her life undertaking to help change the negative stigma surrounding dementia and offer advice and support to those living at home with dementia. Catherine has completed an MSc degree in Dementia Studies and hopes to become involved in doctorate research aimed at helping shape policy and practice to improve the quality of life for those living at home with dementia and their families.
When my mother turned 79, she started to become forgetful. At the time, I was busy with a young son, here, there, and everywhere. I just put mum’s occasional confusion down to old age. Unfortunately, that soon changed. One day, mum announced that she had no money to pay any bills. Frantically, I piled her into the car. We drove straight to the bank … only to have my worst fears confirmed. Unknown to me, bogus callers had wiped out, not all, but a lot of mum’s savings. Rather than get angry, I felt crushingly ashamed. Mum had always been a very independent and capable person but this was no excuse. How could I have missed this? How on earth did I allow this to happen?
It was 2011. A month later, mum was diagnosed with combined Alzheimer’s disease and vascular dementia. From those early days, I resolved that I would do everything within my power to make sure that she was never vulnerable again — no one would ever do anything to harm her or treat her with anything other than the utmost respect and dignity.
I continued to support mum so that she could remain at home. I was resolute in my decision to ensure her total and complete well-being and safety. Over the years, we worked well together as a team. Mum would often say to me, “I can’t remember anything,” to which I would reply, “Don’t worry, I will be the memory box for us both, and you can help me with anything I need help with”. We would look at each other and smile in agreement. I look back on those days now with complete love and gratitude that I was able to care for her.
As time passed, mum’s dementia progressed and was further complicated by paralysis from the waist down. With the help of a small team of great carers from a local care agency, I continued to care for mum at home, even throughout the Covid pandemic. However, sadly, but peacefully, mum passed away at home at the end of 2020. It was a real privilege to be with mum at this time. It made me realise that death is not something to fear but to embrace. It was a time in my life that I will always cherish.
In my quest to care for mum, I began reading up on the condition and everything about it. I signed up for online courses, read articles, books and the latest research. I eventually enrolled at university and completed an MSc in Dementia Studies in 2018. I, then, became interested in research into dementia care in the community and currently have an accepted PhD proposal at university. I see writing books as the best way, within my power, to offer support and guidance to people living at home, share my knowledge, gleaned over a decade, and ultimately help other family carers overcome quickly many of the difficulties we encountered.
When I started to care for mum there was very little information out there. First and foremost, it became very clear, very quickly that mum’s safety was a real issue. The different stages of the condition required different strategies to be put in place and also to make the house as dementia-friendly as possible.
Hence the reason for my first book: “101 tips on staying safe at home with dementia: Avoid falls, floods, injuries, accidents, doorstep crime and more …..” For me, safety was my number one concern on enabling mum to stay at home: This book is a mixture of my own tips and advice on overcoming the trials and tribulations we encountered along the way and includes information on innovative solutions, resources and knowledge gained through my formal studies.
It also became quite clear to me that if mum was ok, I was ok and vice versa. When a diagnosis of dementia comes into the family, it brings a lot of uncertainty and fear. Family carers don’t know what to expect and their knowledge is limited. As time goes on, family carers forget to care for themselves.
My second book reflects my thoughts on caring for my mother. In writing it, my intention is to motivate and empower other family carers at home by touching on the positive aspects of caregiving; offer a more positive and insightful stance on dementia and hopefully inspire those caring at home to care for themselves too. I have dedicated this book to my mother and it’s called: “Dementia Caregiver: With You. For You. About You. Inspirational messages of support for family caregivers everywhere.”
My hope is that it resonates with family members caring at home and helps them move forward in a positive way in times of changing family circumstances and dynamics.