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.
