I had to expose this despicable, destructive, soul-sucking, sadistic disease that took my beautiful daughter
“IT feels quite surreal knowing it has been published and it brings up so many emotions,” says Christine as she considers her new book.
“Amongst the obvious emotions about Anna, I also feel so sad for everything that is happening at the moment.
“It is quite bitter sweet letting people know about my book as I don’t know what is going on in people’s lives at this time. So much uncertainty and so much sadness around.
“It has been really hard writing but I comfort myself by knowing that if I could have read a book like this when Anna was ill, it would have explained so much about what was happening to Anna. I know Anna would approve of my writing it, and if it helps even just one family, every word will have been worth it.”
Christine wanted to write a book about Anna, her illness and the impact it had on everyone around her. But she wanted to make it so much more than just a heartrending story of a beautiful young woman with an ugly disease.
Included in the book is advice on the symptoms and behaviours with signposts for help as well as practical and emotional tips for living with fear, uncertainty and grief. There is also a chapter helping with the complicated process of applying for Continuing Health Care funding as well as a section on communication and how to deal with awkward questions.
Christine has also has written about the importance of end-of-life care planning, lasting power of attorney, living wills and advanced care plans.
She explains: “As a nurse, I have seen so much, and I thought this would stand me in good stead for dealing with my daughter’s illness.
“How wrong I was. The only advantage it gave me was that of being able to find my way around the medical system. My extensive nursing experience did not prepare me for the disease that was to claim my daughter and tear my family apart. I have learned so much through my personal experience of this disease.
“I have learned about a disease that was relatively unheard of at the time of Anna’s diagnosis, and still is. I have learned about my own strengths, both as a nurse and as a mother. I have learned about the different feelings and ways of coping with illness and grief within my own family and circle of friends.
“Subsequently, I have become more tolerant towards those who found it difficult to communicate with me, or to visit Anna.
“In my professional role, I strived to get the importance of palliative care for people with dementia recognised by other professionals. I never realised the true significance of this until I needed the services for my own daughter.
“I was fortunate. I knew how to access the palliative care service. But I know many others who are not so fortunate and their loved one
suffers from lack of the appropriate care and medication.”
Christine adds: “I have also learned about parts of Anna’s life that she shared with others. These memories are very special and I feel so much warmth and respect for these people who shared part of their lives with Anna,” says Christine who is raising money for the National Brain Appeal through sales of her book as well as other fundraising activities.
“I feel I have achieved my aim in writing this book. I know Anna would be proud of me for doing it, and she would be proud of all her family, friends and colleagues for
contributing their words.
“By showing how traumatic this illness is for everyone affected by it, I hope that more and more awareness will be raised. This will ultimately help with the research that is happening now.”
As yet, there is no cure for BvFTD and no particular treatments to halt the progress, only medication to manage symptoms.
While the clinical presentation and progression may vary, BvFTD is ultimately a terminal condition. For people and their families living with this and other dementias, a huge burden rests on the carer’s shoulders. Therefore learning about
comfort care and discussing advance planning are central to ensuring the highest possible quality of life and making informed decisions at end-of-life.
Says Christine: “There is more awareness of dementia in general, though still nowhere near enough awareness about the rarer dementias - the ones people haven’t heard of.
“The Dementia Research Centre, based at the National Hospital for Neurology and Neurosurgery in London are working really hard to find out more and more about these rare dementias and how to speed up diagnosis and enhance support. We must all take heart from this.
“People have asked me how I managed to keep writing. My answer? I did it for Anna. I carried on writing to the bitter end for her.
“Anna was a highly respected nurse working in clinical research for haematological cancers when she became ill. She was passionate about research and would have gone far in her career had she been able. She would want her story told to enable others to see what an ugly disease BvFTD is. I had to expose it in all its rawness to show the world what a despicable, destructive, relentless, soul-sucking, sadistic disease this is.”
Looking ahead, Christine hopes that a film or documentary could be made about the disease, although she has her doubts.
“I was once asked to talk about Anna’s story on a TV news programme. They asked for some video footage of Anna. I sent them a couple of clips but they would not use them as they said ‘they were too upsetting for viewers.’
“I would like to think/hope that someone has the guts to make a film or a documentary out of my story. Anyone?”