CASE STUDY: The 'living grief' of Alzheimer's
NEWS Letter columnist Jackie McGregor knows more than most about dealing with Alzheimer's, having cared for both her parents during their battle with the illness.
Jackie's mother Christina died in 2005 after suffering from Alzheimer's. When she passed away, Mrs McGregor no longer recognised her daughter.
Tragically, by Christmas 2008, her father John, who Jackie describes as her "rock", had also been diagnosed with the disease.
Speaking to the News Letter about her experiences of being a full-time carer for a parent with Alzheimer's, Jackie said: "When my mother was ill it was a living nightmare. We had to remove mirrors because when she saw her reflection she thought she saw a stranger looking back.
"When I went anywhere in the house, even just to the bathroom, I had to take keys with me in case mum tried to get out."
She added: "Being a carer you completely lose yourself, you're caught in a kind of living grief.
"I think I grieved more for my mum while she was alive, because it was like little parts of her were dying in front of my eyes."
The year of Mrs McGregor's death, Jackie married and found out she was pregnant with her first child.
She said: "During that time of unbelievable stress my dad was my rock and was so strong for me and my baby. Looking at him now compared with what he was is just so difficult."
Mr McGregor's diagnosis came as a complete shock to Jackie. Her father, now 83-years-old, had always been fit and healthy and lifted weights until his 80th birthday.
She said: "You find yourself becoming the parent to your parents, my dad was so strong and really looked after his health, next thing here I was holding and looking after him like he was my baby."
After becoming ill herself, Jackie made the difficult decision to place her father in temporary respite care.
"I just got to burnout stage, it's common with carers. I had to be literally on the floor before I made that call," she said.
"I never come away from visiting my dad without tears in my eyes. I hope to get well enough to bring him home soon."
Mr McGregor's condition has deteriorated rapidly and he is no longer able to speak to his daughter.
However, Jackie said her father, a former drummer, is making some progress through musical therapy.
"When he hears Glenn Miller he starts to sob, I think it reminds him of my mum," she said.
Mr McGregor proposed on the first night he met Jackie's mother, who was a singer. They were married for 58 years.
Jackie has started a campaign to help other carers of those suffering from dementia.
She said: "There's just so little support, and being a carer is a 24 hour job, there is absolutely no respite and that has to change.
"Sometimes you have to do very difficult things, like when I took on my dad's personal care which I never thought I'd be able to do.
"At other times you get so frustrated you think you can't take any more. It's so much to take on but you have to get on with it. We just need some support."
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Sunday 27 May 2012
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