Dementia guide

Alzheimer's disease: Joe and Ethna's story

Living with dementia

Media last reviewed: 14/07/2015

Next review due: 14/04/2018

Soon after retiring in 1990, GP Joe McShane found out that his wife Ethna had developed Alzheimer's disease.

Joe cared for Ethna for six years, until a fall led to her being admitted to the Wythenshawe Hospital in Manchester.

The warning signs

Joe describes the changes he saw in Ethna before she was diagnosed with Alzheimer's. "I'd noticed changes two or three years before she was diagnosed, but it's so hard to pinpoint, because Alzheimer's begins so subtly. There are little changes here and there.

"On one occasion, my daughter brought a friend home, and Ethna began chatting with her. 10 minutes later, she repeated exactly the same questions. Later, my daughter said to me, 'Dad, did you hear Mum? Do you think she's developing Alzheimer's?' This was the first proper mention of the word.

"Then in 1990, our daughter got engaged. But to my surprise, Ethna wasn't as interested as she normally would be. Usually, she'd be very fussy about dresses and making the arrangements. She became quite passive. Anyway, the wedding happened and we retired soon after.

"I then noticed that she started becoming unsure of herself and would say, 'Will you put on the washing?' or 'Will you make lunch?' At the golf course, I noticed that she was forgetting her score and wondering which club to use.

"Finally, I went to see a colleague and told him there was something wrong. He arranged for her to see a neurologist on April 6, 1990. In the corridor, he told me that Ethna had Alzheimer's. She wasn't even 60."

Coping as a dementia carer

"After the diagnosis, we stayed at home, and I think I overprotected Ethna. I never let her leave the house on her own. That was fine for about four years. We led a very nice life. Then around 1994, my colleague, who's a psychogeriatrician, suggested she should be admitted to the day hospital, so that I could have a break. That was how the condition was managed back then – supporting the patient's family and carers."

"That worked well for a couple of years, but in 1996 Ethna started walking more slowly, which we knew was common with Alzheimer's. There were also times when she didn't feel well. One day in late September, I was helping her get into the shower. I left her to get some fresh towels, and she collapsed in agony.

"She had to be admitted to the hospital, where investigations showed that her lower spine had collapsed due to osteoporosis. She hasn't walked since. After she'd been assessed, I was told that she needed total nursing care and that she couldn't be managed at home, so I accepted the consultant's offer to look after her in hospital."

Joe's advice

"From a carer's perspective, you go through stages. The first stage starts before the diagnosis. That's very awkward. It's a difficult time for the person with the illness and for the loved ones looking after them, as well as for the professionals. It's not an easy diagnosis, and it takes great skill and expertise. But if you're worried about the situation, don't put off finding out what's happening. Get it investigated.

"Then there's the stage after diagnosis. It's important to remember that this diagnosis isn't disastrous. Initially I thought it was, but it wasn't. People with Alzheimer's don't become a different person overnight. It happens gradually, and people should be encouraged to live as normal and fruitful a life as possible, whatever a normal life means! Don't just sit there and do nothing.

"I'm a volunteer with the Manchester branch of the Alzheimer's Society. I joined in 1994 and help to run carer support groups. Carers are often on their own, and going to a support group gives them a chance to meet one another and release their emotions. They can also bring their loved ones along. We also have days out. Keeping people out of isolation is so important, because carers tend to become isolated. Judging from my own experience, you tend to keep to yourself.

"I'd say that one of the best things carers can do is join carer support groups. Meet other carers, share experiences and support one another. You can learn an awful lot."

For information, support and advice for carers, call the Carers Direct helpline on 0300 123 1053 or ask your local authority for a carer's assessment.

Page last reviewed: 15/06/2015

Next review due: 30/05/2018


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