Norman McNamara (left) has made the brave decision to keep on blogging about his Alzheimer’s, and how he copes with it, for as long as he is capable of doing so. Natalie Valios reports
When Elaine McNamara noticed her husband Norman putting his shirt on inside out and putting a cup in the fridge she thought he was just being a bit forgetful. But a few months later, after a holiday to see Norman’s mother, she realised that his odd behaviour was worsening.
“He started throwing cutlery and plates in the dustbin instead of food, he cleaned his teeth with shaving foam and shaved with toothpaste. And he was struggling to remember things we’d done.”
The crunch came when he couldn’t remember the trip to see his mother and the couple decided it was time to see their GP. In October 2008, at just 51 years old, Norman was diagnosed with early onset Alzheimer’s disease.
The impact of the diagnosis on both Norman and his family has been devastating. “As soon as I got the diagnosis I got the whole family together and told them because I believe in facing it head on,” says Norman. “We are such a close family we have said we will deal with it as it comes.
“My father and grandmother had Alzheimer’s, so I’m aware of the outcome. I do have dark days but I’m a positive person. I take every day as it comes.”
Norman had already been dealt a blow when he was diagnosed with heart failure at the age of 44. “I was already getting used to having a short lifespan, but I made the best of life. This diagnosis was like a double whammy and my world collapsed for a while. I cried a lot, stamped my feet, thinking ‘why me?’ especially after the heart failure, but the support from family and friends brought me back up again.”
Inspired by novelist Terry Pratchett’s decision to go public with his diagnosis of early onset Alzheimer’s to raise awareness of the condition, Norman started writing testimonies, stories and poems as a blog on Community Care’s CareSpace forum to highlight what he and his family were going through.
Blogging under the name Norrms, he is not at all self-pitying, instead he presents a realistic and moving portrayal of how he and Elaine are coping with daily life.
“I am now totally convinced that knowing you have Alzheimer’s is equally just as worse as having it.” (Days are longer but memories shorter, posted 21 July 2010).
By blogging he hopes to improve understanding of the condition while he can still talk and write about it. The process also helps Norman express what he sometimes struggles to say: “It helps tremendously, it lets my innermost feelings out.”
For Elaine, the diagnosis has meant she is now Norman’s full-time carer. Although she has been a care worker for the last 30 years, she has found a wealth of difference between the professional and personal situation. “As a full-time carer you have to look at things differently because it’s 24/7. It’s rare that Norman sleeps a full night through, he has a lot of nightmares and can wake up screaming.”
She hardly ever has an hour to herself as she doesn’t like to leave Norman on his own – he has set the kitchen on fire three times and almost been killed crossing the road several times – but is remarkably sanguine about this new way of life, adding: “You get used to it. We get on really well so it doesn’t bother us if we are together 24/7. If it was the opposite way round he would do it for me.”
For the moment, Norman’s condition has stabilised. “I used to have more bad days than good, but since the medication it’s the other way round. I still forget things, I still have no memory of a lot of things. I regularly ask what day it is and forget my address. I have ‘cloudy days’ as I call them, it’s like a fog in your head. I find it frustrating because I struggle with my words and I can wander off and forget where I am.”
The future is never far from his thoughts. “Forgetting my family haunts me daily,” he says. “I think about the future all the time. I don’t know what it holds but I’m determined to make some kind of mark and leave some sort of legacy to help other people. My future now is raising awareness and spending as much time as I can with my wonderful grandchildren. Time has become precious now.”
➔ Read Norman’s blogs
➔ You can contact Norman by e-mail
Terry Pratchett’s experience
In December 2007, novelist Terry Pratchett announced on his website that he had been diagnosed with a rare form of early onset Alzheimer’s disease, though he stressed: “I am not dead yet.” The author of the Discworld novels, who contracted the condition about two years before the announcement, has since become a very public voice on the issue. In March 2008, he donated $1m to the Alzheimer’s Research Trust, a charity of which he is now patron. He also presented a two-part BBC programme on living with Alzheimer’s last year, while also calling for tribunals to be set up to adjudicate on whether people with incurable conditions could seek help to end their lives.
This article is published in the 5 August 2010 edition of Community Care under the headline “Long days with a short memory”