A CQC Expert by Experience shares her story of how dementia has touched her family’s life.
World Alzheimer’s Month is the international campaign every September to raise awareness and challenge the stigma that surrounds dementia. September 2019 will mark the 8th World Alzheimer’s Month.
Rosemary Lynn, from Cheltenham, was the main carer for her husband Graham whilst he lived at home, before going to a dementia specialist care home in 2015:
Caring for Graham didn’t “touch” my life, it profoundly changed it. After suffering a ‘transient ischemic attack’ (TIA) in 2006 Graham was diagnosed with ‘mixed dementia’ in 2010. At the time I was a senior manager in a local authority but in March 2014 I took voluntary redundancy to support my husband at home. I found the experience of caring for my husband a very difficult and harrowing one, even though I chose to do it, because I felt it he would get the best support that way.
Mixed dementia is a condition where changes representing more than one type of dementia occur simultaneously in the brain.
In July 2015 Graham moved into a dementia specialist care home. Taking the decision to move my husband into care was the hardest I’ve had to make in the whole of my life. I struggled to ensure that he would get the best quality of care possible.
My experience of accessing information, advice and support, which is a lengthy and frustrating process was, I think, typical. Although my job involved me in health and wellbeing services including dementia, I still found it a challenging and soul-destroying process to get access.
Trying to ensure the services you eventually use are of a high quality is like trying to swim through porridge. I visited at least a dozen different care homes before choosing one for Graham and I used the Care Quality Commission reports to help me make a choice.
I became an Expert by Experience (ExE) because I felt I had the relevant experience and insight caring for my husband and through my voluntary work.
Being an ExE has given me the satisfaction of feeling I can make a difference in a very important area of health care. It has allowed me to channel my personal experience of dementia in a practical way to help others going through this dreadful disease.
I enjoy the work and get great gratification from contributing to the inspection process and hope to continue to do so for the foreseeable future.
Rosemary and her husband Graham.