“To give pleasure to a single heart, by a single act, is better than a thousand heads bowing in prayer”
For someone recovering from major heart surgery, being told that he has “dementia” is like having heart surgery all over again. I had a triple heart bypass, and after the surgery, and after surgery a brain scan was performed. This showed that I have frontotemporal dementia (FTD).
When I suffered a heart attack and was told that I have 3 arteries blocked and needed major surgery, and will be unconscious for a minimum of 20 hours, I was not scared. When I was told about Dementia, I was FRIGHTENED, REALLY SCARED. It took a long time to come to terms with the illness, and I had to do a lot of research about the diagnosis and where to go for help.
Luckily, I was contacted by Beth Johnson Foundation, based in Stoke on Trent, who act as advocates for people living with dementia. They are part of the DEEP Network, and it was their support that helped me to get back on my feet. They signposted me to different organisations, and helped me to get the financial, emotional and psychological needs met.
Dementia has taken a lot away from me, but the power of speech and writing is still there. I was scared to go out, and therefore lost friends. My confidence went, and I distanced myself from the outside world.
The support of BJF and DEEP, where I have been helped, encouraged, supported and comforted for almost ten years. It was BJF, who’s continuous support and determination has made me what I am today. I am now an active member of the Peer Support Group formed by BJF for people living with dementia. Indeed, I am the Pioneer of that group, and proud to be part of a wonderful family.
However, I was introduced to Alzheimer’s Society Side by Side through the social media. I made contact with Side by Side and their response was uplifting and I decided to volunteer for the organisation as a Dementia Support Worker, providing face to face visits for people living with dementia. Due to the recent COVID-19 situation, I am providing phone support. I am also a volunteer for Alzheimer’s Society providing Companion Calls to people living with dementia.
For someone who went into isolation after the diagnosis and now actively playing a valuable role as a phone call supporter, it was the peer and the group, who’s love, affection, trust and determination that was the main motivator.
I think peer support is the key to living well with a diagnosis of dementia. I feel that:
- People with dementia are more comfortable with people with dementia.
- They feel more connected.
- They communicate better.
- They open up more.
- They trust each other and confide in each other.
I have had a lengthy discussion with DEEP, Side by Side and Alzheimer’s Society about creating a platform for people living with dementia on a national level and getting more people with dementia involved in this so needed field and cause.
Everyone has had a negative effect by the lockdown situation, but people living with dementia have been affected more. Some can’t understand where everyone has gone, and some wonder why nobody calls or visits them.
If passionate and committed to the cause, I think that people living with dementia have the ability and understanding of the condition to provide valuable and much needed support. I am recognised, appreciated, celebrated and welcomed as a team player by Side by Side and Alzheimer’s Society. I feel that I have made a difference by providing the support to the less fortunate and that in turn has helped me gain my confidence back. It relieves my tension and stress and provides me with a sense of purpose. I am no longer lonely, have gained friends, and enjoying MAKING A DIFFERENCE.
Since the lockdown I have:
- More connection with people.
- Made new friends.
- Been there for people living with dementia and been appreciated.
- Made me feel good in myself.
- I’m taking more care of myself, knowing that I HAVE TO BE THERE.
- I have had a considerable improvement in my health.
I WANT TO BE THE CHANGE THAT I WISH TO SEE IN THE WORLD
