Soon after retiring in 1990, GP Joe McShane found out that his wife Ethna had developed Alzheimer’s disease.
Joe, now 80, cared for Ethna, 78, for six years until a fall led to her being admitted to the Wythenshawe Hospital in Manchester, where she has needed full-time professional care ever since.
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 subtley. There are little changes here and there.
"On one occasion, my daughter brought a friend home, and Ethna began chatting with her. Ten 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."
Video: living with dementia
Watch Joe and another carer talk about their experiences of caring for someone with dementia. With advice and support for anyone newly diagnosed with dementia, worried they have early signs of dementia, or caring for a person with dementia.
Coping as a carer
"After the diagnosis we stayed at home, and I think I over-protected 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 psycho-geriatrician, 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."
The situation now
"Ethna’s very, very ill. The fact that she’s alive is statistically remarkable as she’s in the 19th year since her diagnosis, and probably the 21st or 22nd of her illness.
"She’s extremely unwell, and lies in the foetal position, but she has been beautifully looked after. She receives proper nutrition, proper hydration, beautiful skin care, and her bladder problems are dealt with expertly. She still seems to enjoy her food, and she’s never had a bed sore. As far as I’m concerned, her quality of life is good.
"I recognise that some people would say ‘What’s the point?’, but you could have that attitude about many situations and say, 'Enough is enough'. We celebrated our Golden Jubilee wedding anniversary in June.
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. And 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, which i joined in 1994. I help to run carer support groups, and I’ve also helped to set up the Alzheimer’s Cafés for Carers.
Carers are often on their own, and this café 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."