Living with Dementia

Living with Dementia

Janet and Colin Bird worked hard all their married life. They brought up four children as well as running hotels and fish and chip shops. The couple planned their retirement as the time when they would live in Australia, cruise the world and enjoy some of the proceeds of their hard work.

Today - in their 60s - life couldn't be more different from their exotic retirement dreams. Their big circle of friends has shrunk, they live quietly in a Lincolnshire village and Colin can't go out alone.

For the past six years Colin has struggled with dementia - at first refusing to accept his life-changing diagnosis. Now, as his condition progresses, Janet admits she often feels depressed and says she feels as though she has a child to care for again.

Like many other carers whose problems were recently highlighted by the Royal College of General Practitioners, Janet has asked her doctor for help with depression.  Janet says that sometimes she gets so frustrated about their situation that she feels like ‘absolute rubbish’, but that tablets from the doctor are helping with her symptoms.  Despite the stress, Janet remains passionately protective of Colin's dignity, making sure he dresses smartly every day just as he did when he was in business.

Colin (66) and Janet (63)  have been married for 45 years and through Colin's determination they built up several successful businesses.  ‘We worked really hard together,’ says Janet. ‘And as Colin loves the sun, we planned to take early retirement and to spend at least five years living in Australia.’

They went Down Under in 2003 and settled into a new way of life until 2005. Sadly the first signs of dementia were revealed when Colin couldn't write down his golf score.  ‘He began to struggle with getting out his words,’ said Janet. ‘We both knew something was wrong.’  They returned to England in 2007 and Janet noticed that Colin was behaving strangely.

Always a brilliant cook, she found him one day trying to fry eggs with their shells still on. In 2008 their worst fears were confirmed when a doctor at Addenbrooke's hospital, Cambridge, confirmed a diagnosis of Alzheimer's. At first Colin hid his problems from friends, but today his difficulties are increasing and Janet admits there are times when they both get very low.

Janet speaks movingly about the pain of having to have separate bedrooms after a long and happy marriage - the only way she can get any sleep at night as Colin is very restless and often gets up to walk about.  Their daily routine is now a far cry from the glamorous cruises they enjoyed or the sun-drenched lifestyle of Australia. Colin needs help with bathing and now is sadly unable to make a cup of tea. ‘In many ways it's the little things I miss,’ says Janet. ‘When you are caring for someone with dementia, you have to do everything. I can't just pop out to meet a friend as I have to arrange a sitter for Colin. I really miss him bringing me a cup of tea in bed.’

Janet has a few hours break a week when a carer and a friend take Colin out. Their grown-up children are very supportive too but at the end of the day, it's Janet who does most of the hands-on caring.
She says she's now so very tired that she's considering taking a holiday with a friend, but she admits she's ‘very worried’ that Colin may not be happy having respite care.

Retirement may not be as Colin and Janet had planned it but she wouldn't change her marriage for the world.  ‘Dementia is a horrible illness,’ says Janet. ‘But in many ways Colin is still the Colin I married all those years ago. I would never ever leave him. We worked hard together all our lives and I will always be there for him. ‘When things go wrong we have a laugh - that's all we can do.’