I met my wife, Linda, in 1985. She had a great sense of humour and an immense talent for art. We got married in 1989 and we had our first child Thomas in 1991. My daughter, Katie, followed in 1993.
I remember soon after Linda turned 50, we went to Italy. She wasn’t quite as responsive as before. Over the next couple of years, she was forgetting appointments and burning food. There was one time when she needed to pick up Katie from a dance session but she got completely lost and distressed, despite previously knowing the route.
She was diagnosed with early onset Alzheimer’s over five years ago now. She was 53 at the time. The route to diagnosis was tortuous. Some medical professionals put it down as stress at first, which to me was a sign that they just didn’t appreciate that dementia could affect someone so young.
However, it’s also the effect that dementia has had on the wider family that can be so distressing. With my daughter, Katie, I find that I have to be her mum and her dad. Katie misses having a mother figure and I try to fill that role as best as I can. She needs more protection than ever during this lockdown due to her Down’s Syndrome and Type 1 diabetes making her a vulnerable person; it becomes a 24/7 job looking after both her and Linda. My son had to leave our home as he could no longer cope with his mum’s deterioration.
Before the pandemic there were many organisations that would coordinate respite care. Now there is no such thing as a break. As Linda’s dementia is progressing during this lockdown, things that used to take ten minutes now take an hour. Getting her out of bed, in the shower and feeding her all add up. People say to me that I must be getting loads done but if anything I’m getting less done now.
Luckily, there are support groups on social media which have helped me connect to others. Many of those in Facebook groups are carers so it is good to share what we are all going through. Many are looking after parents, or are in their 70s and 80s, which again adds to this idea that dementia affects a person at a particular time in life which just isn’t true.
When I first found out about Admiral Nurses through the local Carers in Hertfordshire, a marvelous support group in our county, I was so relieved. We have received all sorts of help, including counselling for both myself and Katie. Our current Admiral Nurse, Lesley, is absolutely fantastic. She gives me advice on managing Linda’s symptoms, including suggestions around making sure she’s eating properly. Whenever I hit a brick wall, Lesley allows me to go around it and consider new perspectives for the benefit of myself, Linda and the wider family.
Linda’s dementia is now at a very advanced stage; we built an extension in the house for her in anticipation that she will deteriorate further, and that is now helping hugely. The extension is full of all her artwork, which she sadly doesn’t recognise anymore. To us it is a reminder of the passion she had with painting and just how much she means to us.
Find out more about John and Linda in their video here.
John and Linda's story - nine months on
We caught up with John nine months later, and faced with his wife’s declining health, John feels more challenged than ever before. Read his call to improve the situation for unpaid carers and the people with dementia they support