Alzheimer's is a heart-wrenching disease that inflicts relentless
pain and sorrow on both you and your loved one. Witnessing the gradual decline
of someone close to you can leave you feeling helpless and devastated. With
each passing day, it feels as though you are not only losing a part of them but
also a part of you. One of the most agonising parts is the beginning before
their diagnosis, when you don’t know that there’s anything wrong and the weight
of the unknown bears down on you. I had the privilege of speaking with David
Shepherd whose wife lives with a Dementia at Heanton Nursing Home in Barnstaple
and he wanted to share his story with you today.
In the two or three years before my wife, Catriona’s, diagnosis
it was challenging. Initially, I didn't think there was anything medically
wrong and I still
carry enormous guilt that I didn’t realise sooner. I found I often got angry
and frustrated when Catriona forgot things, I just thought she wasn’t
concentrating but needless did I know she was already struggling, and my
reactions must have made things even scarier for her. One day she drove to the supermarket and
couldn’t park the car, I really didn’t understand why, but it became more
apparent that there was an underlying issue. The struggle was in getting her to
admit it and accept that she needed to see the doctor. It took over 6 months of
gentle persuasion to take Catriona to her first appointment.
Catriona was
finally diagnosed with early-onset Alzheimer’s in 2014 after a long and
tortuous process. When we received the diagnosis, I felt an overwhelming surge
of emotions. I was filled with what felt like a torrential downpour of
desperation mingled with a glimmer of relief. The desperation I felt within me
came with floods of tears, as I knew that this cruel illness would relentlessly
steal away the person I love and cherish. Catriona never really accepted that she had the
illness and so life continued to be a struggle and I felt that I was walking on
eggshells every time we came close to talking about it.
Everything changes
when your partner has Alzheimer’s. Eventually, you become a full-time carer –
and that really does mean 24 hours a day. It’s exhausting but I had no choice,
Catriona wasn’t safe to be left on her own for a moment. By that point, you can’t go out because they
can’t go out. My world became as small as hers – just our four walls.
We were fortunate that the diagnosis took place at the National Hospital
for Neurosurgery in London, as they are the experts in dementia. After the
diagnosis, we had some time with a nurse, who gave us guidance on what to
expect, where to go for support and answered any questions we had, it was very
comprehensive. We had twice-a-year appointments at the hospital, and visits
from various people from the local Memory Clinic, to monitor the progress of
the condition, and Catriona even got involved in some research projects. We
were directed to a local charity that specialised in young people living with a
Dementia, which provided a helpful support group along with activities for Catriona.
When we embarked on our journey to move to Devon in 2015, the
level of support drastically changed. My heart sank as we walked into the
office of our new GP, with hope filling our hearts for a similar level of help.
We poured out our worries and concerns, seeking assistance, but the words that came
from the GP struck us with devastation, leaving us shattered and disheartened. The
GP said there was nothing
he could do to help other than signpost us to the Alzheimer's Society. So, life
continued on, taking each day as they came trying to live as normal life as we
possibly could.
In the summer
of 2020, I made the heartbreaking decision to move Catriona into a Care Home which
was one of the toughest decisions I’ve ever had to make. It came to a point, the place we had called home for many
years, a place full of love and memories, our sanctuary, was
no longer the safest place for her. Due to her increasing mobility and balance
issues, I knew that I had to find a home to keep her safe, but this was at the
height of the COVID-19 Lockdown. It meant that I couldn't visit the home
beforehand to see what it was like, but, far worse, it meant that once she was
led away from me, from the garden at Heanton Nursing Home, I would not be seeing
her again for many, many weeks. That remains engraved in my memory as the saddest, toughest day
of my life.
The team at Heanton arranged video calls that offered a
glimpse into her world, but in truth, those virtual encounters could never
replace the warmth of her presence, the touch of her hand and the comfort of
being by her side. I would sometimes find myself by the river in
Bideford, looking up and across in the direction of Heanton and thinking about
her, wondering how she was and what she was doing.
Once visits were possible, that definitely helped me deal
with the transition, as it started to lift some of the guilt that I was feeling
about having sent her off to live in a care home. The recent relaxation on the
rules about having to wear a mask has really helped - Catriona was able to see
my face again for the first time in over 2 years, and that helped her recognise
me, I hope, and certainly led to more of her warm smiles.
Navigating the journey of caring for a loved one living with a
dementia is undeniably challenging. Despite the heart-wrenching moments and the
profound changes that Alzheimer's brings, we cherish the memories and the
unwavering strength human connection can bring to us.
Heanton Nursing Home, wholeheartedly understands the immense struggles
that Alzheimer's disease brings to the lives of those affected and their loved
ones. David visits Catriona most days, sometimes bringing his band to play
music which brings solace and joy to her and other family members within the
home. At Heanton, our commitment extends beyond our family members; we embrace
the opportunity to be a guiding light for their loved ones, offering unwavering
support as they navigate the complex and emotional journey Alzheimer’s brings.
-001.jpg "Retelling Her-story: a new ceramics exhibition at the Burton at Bideford. Menses (The Period God). Photo copyright Jam Westwood (All Rights Reserved)")
.jpg "Retelling Her-story: a new ceramics exhibition at the Burton at Bideford. Photo copyright Jam Westwood (All Rights Reserved)")