Dementia Awareness Week – 18th-24th May 2015
Alison Carter knows all about the devastating impact dementia can have on family life: her father John was diagnosed in 2007. Alison describes her father’s early signs and symptoms and the adaptations made as the condition progressed. Today, John is in the final stages of dementia living at home with wife, Leslie. Alison has now dedicated her life to help others to live as well as possible with dementia, and here she tells her story…
Sometimes in life, you go along unconcerned about something until it becomes personal. Our story is not unique; there are many people affected by dementia and I know that I speak for all of them when I say that dementia will have profoundly affected their lives. Since my dad’s diagnosis of Vascular Dementia in 2007, it has been a very difficult journey, but one by which I have been truly inspired to change what I’m doing with the rest of my life.
First signs and symptoms
Everyone’s experience of dementia is different. In dad’s case, he started to note little changes a year or two before his formal diagnosis. He always enjoyed crosswords, but found that he was becoming slower at thinking through the clues. And in time, some things we take for granted slowly disappeared, such as the ability to talk normally, read and recognise money.
Courage in sharing the diagnosis
Early on, my parents decided to share dad’s diagnosis with family and friends – an act that took huge courage, as there’s still much stigma and fear associated with dementia. Unfortunately, many friends stopped visiting as they found it hard to communicate with dad who often got lost for words. The grandchildren, however, accepted their grandad as he was.
Dad experienced depression, confusion and hallucinations, but mixed in with that he still enjoyed many things. For example, mum bought a comedy box set, which they viewed repetitively as dad laughed at it so much. Mum became very creative and as dad’s condition progressed, she helped him to live a good quality life.
But the crisis point still came…
We didn’t see it coming. Dad was becoming increasingly disoriented; he would find it difficult to coordinate certain actions such as eating with cutlery and getting in and out of the car. He occasionally was anxious about money or he might mistake mum for the hired help.
One afternoon, dad went on a walk, which my mum thought was just around the garden. My parents were eventually picked up by a kind neighbour who thankfully saw them in the road in the dark.
Dad did not really sleep again. He would stand up all night long, sometimes resulting in a fall. We soon became exhausted and were forced to admit dad to a care home for respite.
Dad didn’t want to be there and, although he went in walking, talking and feeding himself, within a week he could no longer do anything. He rapidly lost weight and interest in life, even with mum going in every day.
Mum and I were determined to bring dad home as we knew that was where he wanted to be, but it was easier said than done. Mum had to prove her competence to care for him to a range of professionals. At the end of March 2012, after 12 weeks in the care home, dad came home to die.
Home is best for health and happiness
We were lucky to find Heather who supports mum to care for dad at home. Although, given only a week or so to live, dad quickly rallied and he’s still with us today.
Dad is calm and contented. He enjoys home cooking, the changing seasons of the garden, and the love of our family. It’s so important to acknowledge and include a person with dementia. Although dad cannot communicate except by the tiniest gestures now, he still understands what is going on.
Be prepared – learn about dementia
Based on our experience, mum and I started working on our concept of a new kind of companionship and care service called No Place Like Home (www.noplacelikehome.eu), which specialises in dementia.
Already a Dementia Friends Champion, I formed a local Dementia Action Alliance to raise public awareness and understanding. We both volunteer with Alzheimer’s Research UK and mum regularly helps at her local Dementia Café. Together, we deliver free dementia workshops for family carers, drawing on all we have learned, read and experienced over the past few years.
Come along to Faversham’s Dementia Awareness Day at the Alexander Centre on 23rd May, 10am-2pm, where there will be free advice and information, Dementia Friends’ sessions, research talks and more.’ For more information, call 01795 597983.
Dementia Key Statistics
- There are currently 850,000 people with dementia in the UK
- There are 40,000 younger people with dementia in the UK
- There will be 1 million people with dementia in the UK by 2025
- There are 670,000 carers of people with dementia in the UK
- Two thirds of people with dementia live in the community
- Only 44% of people with dementia in England, Wales and Northern Ireland receive a diagnosis
words and photos by Alison Carter