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Alzheimer's: a carer's story

Monday 8th September 

Pharmacist Caryl Kelly, 72, lives in Nottingham with her husband Tom, 80, who has dementia. Here Caryl describes some of the challenges of being a full-time carer.

It was five years ago that Tom Kelly was diagnosed with Alzheimer's and vascular dementia (“mixed dementia”), but the signs were there long before, according to his wife. “One didn't realise at the time that this was Alzheimer's, but there were changes and things happening and, on reflection, I can see that it has been going on for probably well over 10 years,” says Caryl.

He was becoming increasingly forgetful and was having problems finding his way when driving. Caryl made an appointment with the family GP, who referred Tom to a memory clinic. He had a routine memory test every six months, but Caryl eventually pushed for a diagnosis, as their children were frustrated at not clearly understanding what was wrong with their father. 

“Tom certainly didn't acknowledge that he had any sort of illness at all, never has and still doesn't,” says Caryl. “They then did a brain scan and confirmed to me that he had Alzheimer's and vascular dementia.”

Quality of life

Over the past five years, Caryl has watched her husband's condition deteriorate. “For Tom, the quality of life feels quite low. He doesn't garden any more, he never looks at his stamps. He can't read now, although he likes to look at picture books.  He can still listen to classical music and enjoy that, but I can't take him to a cricket match, which was one of his great passions. He's withdrawn from everything that was his joy in life before – apart from music, and he still loves to see the flowers and trees in the garden.”

Essentially Tom requires assistance with almost everything, from getting dressed to using the lavatory, and can no longer be left on his own. “He wanders off and doesn't know where he is,” says Caryl. “The police have picked him up on the busy main road before, and so now I wouldn't leave him alone for a second.”

Day-to-day routine

On Mondays and Wednesdays Tom attends a daycare centre, and a carer comes to the house twice a day to help with showering and dressing, or undressing Tom. On Fridays someone comes to the house for four hours, allowing Caryl a small break. This assistance is facilitated through social services, and Caryl contributes towards the cost. “The weekends can be pretty endless though, I must say,” she comments. “It's a very lonely life, because Tom doesn't talk or have any real conversation.”

There's a regular check-up at the GP surgery to monitor Tom's condition, as he also has diabetes, atrial fibrillation (a heart condition), hypertension and glaucoma. Everyday things such as a trip to the shops or to the park present a challenge for Tom, as he finds walking difficult. “But he does quite delight in being taken out for tea sometimes,” says Caryl, “and I do try to take Tom out as much as I can, so that he sees other people and gets some exercise, even though his lack of mobility limits activities.”

As the Kellys moved to Nottingham after Tom's retirement, their five children and family friends are no longer nearby. “We're a long way from our grandchildren and I miss them terribly,” says Caryl. “It's not an easy life for me, in the sense that I'm always tied to being home for the people coming to put Tom to bed or to get him up. But you do whatever you can for someone you love – we said 'for better or for worse' when we married.

“We thought we'd go travelling and see the world, but our lives didn't turn out as we thought they would. But we have happy moments together, because although Tom is not the same person that he was, there is still Tom at the heart and his sense of humour still comes through at times.”

Sources of support

The dementia café in nearby Wollaton has been a useful resource for Tom and Caryl, as well as “singing for the brain” sessions organised by the Alzheimer's Society. In recent months, however, medical check-ups or setbacks in Tom's health have prevented them from attending.

“I have to say I've had very low points over the past year,” says Caryl. “Coping with continence issues is one of the most difficult things of all.”

Things became particularly bad before Christmas, she says, soon after she retired and her son made a call to social services which resulted in a carer's assessment. “Since then I've been using the internet to look for support and through that found the Alzheimer's Society and Carers UK,” says Caryl. “I've been using both sites quite a lot for information, reading the blogs and seeing what's going on.”

When Carers UK were looking for ambassadors, Caryl was quick to volunteer. “I didn't really know about Carers UK and asked myself why, when Tom has had dementia for 10 years. Obviously I didn't know about it because they need more ambassadors to tell people that help is there, that support is there,” she explains.

“You can't take away the problems, but you can share them, and that makes a big difference – even a voice on the telephone when you're really frustrated.  Organisations like Carers UK and Alzheimer's Society can make a huge difference to people's lives.”

Further information

Our thanks go to Carers UK for putting us in touch with Caryl Kelly. The Carers UK Adviceline is available on 0808 808 7777 from Monday to Friday, 10am to 4pm. It provides advice, information and support on all aspects of caring for an older or disabled loved one.

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