'Dementia has robbed my husband of his precious memories, that's why I'm doing the Alzheimer’s Society Leeds Memory Walk'
Carol’s husband Colin has Alzheimer's disease, the most common cause of dementia in the UK. He also has Parkinson’s, a condition in which parts of the brain become progressively damaged over many years.
He was diagnosed with the latter 14 years ago, a month before he retired at the age of 65. The dementia diagnosis came years later in 2018.
“He started having quite severe hallucinations and became quite paranoid,” Carol says. “He’s a very gentle, gentle man, as well as being a gentleman but he could get very angry and lash out which is not like him at all. He’s not an angry person until dementia took hold of him. It’s very hard to put the line down and say that’s Parkinson’s, that’s dementia because the two now are so blurred.”
Colin, 78, has been in a nursing home for three years. “He’s still got a very gentle nature but he doesn’t know his children anymore, he doesn’t know anybody apart from me,” Carol says.
“He knows me but whether he knows the relationship to me is debatable. He’s previously said things like ‘I shouldn’t have divorced you’ and that’s because we live apart. It’s changed his personality, robbed him of his precious memories. He’ll say hello to me and know I’m Carol and in the same breath ask if his mummy or daddy is coming today.”
She adds: “Every day I grieve a little bit more, and it’s an on-going grief that never goes away.”
Seeing the effect the condition has had on her husband is one of the reasons former library manager Carol is taking part in the Alzheimer’s Society Leeds Memory Walk next month.
Carol, 66, from Guiseley, Leeds, is encouraging others to sign up for the event at Temple Newsam Estate on October 1, to help raise funds and awareness for the charity.
Her husband’s diagnosis is not the first time she has seen the impact of dementia.
Her ex-husband is also living with the condition and her mother and Colin’s mother both died with it. Other members of Colin’s family have been affected too.
The forthcoming Memory Walk will be Carol’s first. She is set to be accompanied by her daughter Heather, son David, his wife Laura, and their two children Bethany, 13, and Isla, eight.
“My son and daughter’s dad has Alzheimer's as well so as a family the grandchildren are very affected,” Carol says. “Hence why we are calling ourselves The Grandies - the grandkids picked the name because it’s their grandparents that have been affected.”
“It’s something we can do as a family,” she adds. “It’s probably too late for Colin, but to help others and raise awareness…. I want to feel as though I'm doing something.
"Raising money is part of it and I appreciate that but it’s more about awareness for me. There’s all these people living with dementia and something has to be done.”
The Alzheimer’s Society is encouraging people to join Carol and her family to help people affected by dementia through some of the hardest and most frightening times.
Memory Walk brings together people who have been personally affected by dementia, those who want to walk to remember a loved one, and people looking to raise money for charity.
Michael White, area manager for Alzheimer’s Society, says: “Too many people across Yorkshire and Humber are facing dementia alone without adequate support. We urgently need to find a cure, improve care and offer help and understanding for people affected.
“We are in awe of our amazing fundraisers like Carol and her family who go above and beyond to raise vital funds and awareness for the estimated 76,130 people living with dementia in Yorkshire and Humber. Every step our fundraisers take will to help us provide a lifeline of support for as many people affected by dementia as possible.”
Hundreds of people have already registered to take part in Leeds Memory Walk. Supporters who can’t make it to the organised event can also opt to walk on their own, or with loved ones, on the paths, pavements, parks or pebbles in a location of their choosing throughout September.
Visit memorywalk.org.uk to find out more.