Choice Blog

"We must end Alzheimer's stigma"

There can surely be nothing more heartbreaking than watching the person you love and admire slowly disappear in front of your eyes. Physically they are still there but emotionally they are somewhere else and no longer able to provide you with the love and support they once did.

Three years ago, when Helen Trevorrow was 12 weeks pregnant, her mother Eileen dies from Alzheimer's disease. Eileen was 77 and had been unable to share her daughter's good news. 

For nine years, Helen (pictures with her parents) watched the woman who at 18 had moved from County Cork to London and found a job in Lloyds Banks start losing her confidence and becoming bewildered in new surroundings.

"What happened to Mum was very different from simply forgetting. It was like she was in a dream- a bit like having too much to drink the night before and not knowing where she was the next day. At the beginning, there were moments of clarity but these decreased over time.

"When people ask how you feel when your Mum no longer knows you, you explain that it is the least of your worries because by then there are much worse things to worry about, like keeping her clean.

"But I do recall taking her shopping when she was 74 and asking if she knew me. Mum replied, 'Yes. I've seen you around.'"

After marrying Glyn Trevorrow, a Ford factory worker, and having two sons Owen, now 56, and Aida, 54, Eileen went to Newland park Teacher Training College in Uxbridge at the age of 30 to train as a teacher and then taught at Foxborough Primary School in Langley, Berkshire, for 30 years.

Helen, now 42, says: "Mum was very bright, loved poetry and was a member of Slough amateur dramatic society. At Foxborough Primary School she was responsible for pastoral care and took courses on how to deal with abused children." She first noticed a change in her Mum when Eileen retired from teaching at the age of 62.

"I believe retiring at 62 after all those years of hard work was the catalyst. Mum lost confidence in herself. Retirement is seen as a panacea but when people have worked all their lives it is a big adjustment to make. People still need to feel useful."

Helen adds: "it is not someone losing their keys you need to worry about; it is when they hold up a key and wonder what that small piece of metal is for that you should be concerned, because it shows that part of the brain associated with recognition is no longer functioning properly."

the first indication that things were not quite right with Eileen came on a visit to see Cirque du Soleil at the Royal Albert Gall.

Helen recalls: "I have a vivid memory of that evening and the lovely clothes Mum was wearing. But for some reason she thought we were in Slough and the scared look on her face when we told her we were in London is still etched on my memory. Mum was 68."

Even when Helen and her Mum flew across the Atlantic to New York a year later, Eileen imagined she was somewhere else.

"We were in a yellow cab driving through Manhattan to a downtown restaurant when Mum asked, 'Is this how you get to work? You're so lucky having this restaurant around the corner from your house.' At the time I was living in Ladbroke Grove, London, and here we were in New York.

"We'd been planning the trip for a long time, so I now realised that Mum's condition was really serious. On our return, I rang her GP and asked if he would discuss these instances with her on her next visit." It did not help that Eileen refused to discuss her problems with her family and would get angry if the subject was raised. At the age of 70 after a home assessment she was diagnosed with Alzheimer's Disease.

Helen adds "From then on, these kinds of incidents became more frequent. Mum would go to the shop pay for the food she wanted but leave the bags of shopping behind. she also became very particular about clothes and would only wear jumpers with striped. We had to convince her to get rid of her car because she no longer knew when it was safe to start and to stop.

"Mum's illness changed my Dad's life dramaticlally. She had always done everything but now he had to look after her day to day. He was marvellous."

As Eileen's life continued to unravel, she had to have four lots of carers to help look after her, but in 2013 the family decided she would be better off in residential care and she was admitted into a care home in Ivor, Buckinghamshire.

"At the end Mum was so ill and her quality of life so poor that her passing was a relief, but I feel guilty for saying that." 

For Helen the most heartbreaking thing was being unable to share the news of her pregnancy with her Mum.

"That hit me really hard. As for me I will never retire. I don't want a test to discover whether I'll have Alzheimer's when I'm older.

"But we really need o get rid of the stigma that still surrounds this disease and do more research so that one day it becomes a treatable illness."

Eileen Trevorrow dies on June 11, 2014, at the Melissa Clinic in Slough. Helen had named her daughter Ruby Eileen after her Mum. 

Helen Trevorrow has written a novel, In the Wake, in the vein of The Girl On The Train and Sometimes I Lie which will be published on June 28 (Urbane Publications, £8.99). It tells the story of Kay who, devastated by her mother's death, struggles to maintain her high-flying career. She becomes entangled in a mystery she's been brought in to manage, and as she spirals out of control, long-suppressed memories surface.

What do you think to this? Do you have an Alzheimer's story to share? 

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