insideKENT Magazine Issue 38 - May 2015 | Page 156
CHARITY
Alison's Story...
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...
Alison's parents, John and Leslie, at home
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.
Leslie and Alison
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, 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 Faver sham'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.
Alison's parents,
John and Leslie,
on their
wedding day in 1958
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.
156
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