'Every day I grieve a little bit more': Leeds librarian's battle to deal with husband's dementia induced hallucinations and violent outbursts

Before being moved into the care system, Carol Cook cared for her husband Colin who suffered from hallucinations and violent outbursts as a result of his dementia.

Both her husband and ex-husband are living with dementia, and her mother, mother-in-law and aunty all died with the condition.

Former library manager Carol, 66, said: “He’s 78 and for the past three years has been in the care system, with most of that time spent in a nursing home. The six months before he went into care were the most difficult for me.

“He was having hallucinations and could sometimes turn violent – he wasn’t safe and neither was I. Now I visit him every day and it’s hard, but I love him and want to be with him."

Colin was diagnosed with diagnosed with Parkinson’s disease at the age of 65, a month before he retired. He was later diagnosed with Alzheimer’s disease, which Carol describes as “the dominant condition”.

“I honestly don’t know how I’ve coped. You just have to. I’d been coping with his Parkinson’s for many years before the dementia diagnosis, so you just adapt.” she said.

Having previously cared for her mother who died from the disease, Carol described her husband’s diagnosis as being “déjà vu”.

“I’d seen the effects of dementia before with my mum, Colin’s mum and aunty, so there was an element of déjà vu when it came to Colin. I thought to myself, ‘I’ve been here before’ and I’m just going to have to get on with it,” she said.

“Every day I grieve a little bit more, and it’s an on-going grief that never goes away. When someone dies, the grief does eventually get better, but with dementia it doesn’t – it gets compounded as the condition progresses.

“Having said that, I do still get occasional glimpses of the man I married. I’ll arrive at the nursing home and say, ‘hello gorgeous man’ and he’ll reply ‘hello lovely lady’ which is what we’d always say to one another. I call those moments ‘golden nuggets’ – and you store them in your heart.”

Carol is set to join hundreds of fundraisers going the extra mile for Alzheimer’s Society at Leeds Memory Walk.

The forthcoming Memory Walk on the historic Temple Newsam Estate will be Carol’s first. She will be accompanied by her daughter Heather, son David, his wife Laura, and their two children Bethany, 13, and Isla, eight.

Carol added: “We’re calling ourselves The Grandies, a name chosen by my grandchildren. We’re all looking forward to what I’m sure will be a wonderful day. We’re hoping to have a lot of fun while raising awareness of dementia.”

Alzheimer’s Society is encouraging people in and around Leeds to join Carol and her family on Saturday, October 1, to help people affected by dementia through some of the hardest and most frightening times.

Memory Walk events have been a regular fixture in the Autumn calendar for over 10 years, seeing half a million walkers raise over £41 million for Alzheimer’s Society.