My family and dementia
When I tell people that my dad had vascular dementia for about 19 years, the usual reaction is one of surprise – can you really live with dementia for that long?
The answer is a resounding yes, not least because with multi-infarct dementia, the most common type of vascular dementia, the cause is a series of small strokes which can often be so tiny that the person might not notice any symptoms, or the symptoms may only be temporary. The cumulative effects, however, are devastating on the brain and the person’s ability to function.
Devoid of any additional support or resources, we simply had to learn about dad’s dementia as it progressed.
My father was, in every other respect, a very healthy person who had led an active, outdoor life as a farmer and man of the country. Without his dementia he would most likely have lived a long and happy retirement, but instead it was characterized by ten years of slow descent into confusion, hallucinations, paranoia and an inability to look after himself or his home. Given that I was a teenager at the time, this was particularly painful to watch.
Dad’s diagnosis finally came after we found him collapsed at home from a much larger stroke. From then on he was to spend the last nine years of his life in three different care homes, punctuated by various spells in hospital, before he died in April 2012, aged 85.
You may well think that as a result of his dementia, my dad had no quality of life, but the reality was very different. As a family we made sure that every moment we were with him had as much meaning as possible, that his life was filled with light, laughter and fun, and that he was surrounded by love until he took his last breath.
For us, devoid of any additional support or resources, we simply had to learn about dad’s dementia as it progressed, inevitably making mistakes along the way, but always trying our best to understand what his life was like and what he needed. Through the work I do now, I aim to use that knowledge to improve the lives of all those who are touched by dementia, increasing awareness and education in society as a whole, and transforming the care given to people with dementia and their families.
Sadly we still don’t know enough about the numerous different forms of dementia, of which vascular dementia is just one of many. So many lives are affected when someone develops dementia, which is why research into the causes, treatments, prevention and cure is so close to my heart. The work of Alzheimer’s Research UK is vital in changing this landscape to one of more certainty and understanding, which as anyone with acute personal experience will tell you is something that we all dearly wish for.
About the author
Beth Britton is a freelance campaigner and consultant, writer and blogger specialising in issues affecting older people, health and social care and specifically dementia. Her work has been described as 'Terrific,' 'Amazing. REAL story of dementia,' 'Insightful, heartfelt and truthful,' 'Moving and inspiring.'
Hi Beth, Thanks for sharing your story. My grandmother, 92, has vascular dementia and has been in a home for a year now. My immediate family visits her often and tries to, as you put it, “.made sure that every moment we were with as much meaning as possible, that life filled with light, laughter and fun..” We definitely don’t have the expertise, time or resources to look after her 24 hours a day – which she requires for quality of life and for safety. Any advice I could pass to my family? I feel terrible for my father, an only child, who has had to defend her existence in a long-term care facility by his cousins and relatives. They are uninformed interferers, who have in the past and in recent times – visit my grandmother once or twice a year. Yet, they result to making accusatory posts – particularly those public social media sites – denigrating my parents, judging, pulling in their friend to publicly debating the injustice etc., feeling “sad and sorry” for my grandmother “who longs to be in her own home as opposed to a locked-down facility”. I think you get the picture.
They do not seem to understand the cycle of one’s cognitive abilities when one is suffering from dementia. It’s hard enough concentrating on what’s really important – loving, supporting my parents and educating ourselves about dementia. I don’t want my dad to feel like he has to defend the specialists’ decision and his worth as he is not able to provide primary caregiving. Thanks for reading. 🙂 Valia
Thank you for sharing your story.
I’m very sorry to read about the problems you are having. Unfortunately I am regularly contacted by many people who are experiencing similar issues – the diagnosis and deterioration of a loved one with dementia, and the long-term care that is needed, can raise many issues within families, often leading to very upsetting confrontations.
Sadly there are often no easy ways to resolve these issues, particularly where viewpoints are very entrenched and hurtful to others. My advice would be to focus on your grandmother and spending time with her. I am, and will always be, incredibly grateful for the time I spent with my dad – it was very precious and I was determined that nothing and no-one would get in the way of that.
Whether a loved one is in a care home or not should never affect spending quality time with them and sharing in the things that they and you can enjoy together. Even really simple things, like holding hands, giving your loved one a hand massage, having tea or a meal together, or sitting outside in the summer sunshine, can be hugely meaningful for all concerned.
This post, from my D4Dementia blog, may provide interesting reading for you: http://d4dementia.blogspot.co.uk/2012/08/dementias-emotional-rollercoaster.html
I wish you and your family well.
All the best, Beth