Dan Brown’s father Kevin was only 59 when he was diagnosed with dementia and lived with the condition for 14 years. Here Dan shares his family’s experience of the dementia journey
How was your dad diagnosed?
It took about six months and involved several memory tests. The diagnosis he was eventually given was ‘pre senile dementia.’ This was back in 1999 and thankfully I don’t think that sort of terminology is used anymore. By bizarre coincidence Mum’s twin sister Val was then diagnosed with Alzheimer’s, she was only 55. Within the space of six months my poor mum had been told that her twin sister and her husband had dementia. It was incredibly upsetting.
Looking back, were there any signs before that he might have dementia?
Dad was an absolutely adorable person who was prone to bouts of depression and had been feeling quite low for some time. He was also becoming forgetful. He worked part-time as a magistrate but began getting names mixed up in court, once he even started dozing off to sleep. But we knew nothing about dementia and his ‘symptoms’ could have all been related to something else. Besides, Dad seemed very healthy; he didn’t smoke or drink, had a good diet, and took a bit of exercise. He was in the prime of his life.
What happened after diagnosis?
Fortunately, Dad had an amazing consultant who prescribed Aricept and spent time explaining the prognosis fully to Mum and Dad, but I don’t think either of them really believed it. As a family I think it’s fair to say we all went into denial and it took around three years for us to start accepting it. I had this idea in my head that I’d be able to find a way to make him better. I assumed dementia was just a ‘memory’ problem and if I was able to put things in place to stop him forgetting, he would be fine.
How did you tell other people and what was their reaction?
Many people didn’t have any idea what dementia was and I often had to explain. But friends, family and colleagues have only ever been supportive.
What were the main challenges you faced and when did they happen?
Mum was still working full time as a teacher so I moved back home (I’d been working in Derby) within about six months of the diagnosis and spent as much time as possible with Dad. I quickly realised that caring for someone with dementia involved a lot more than writing reminder lists and sticking post-it notes around the house. I also started a psychiatric nursing degree which I hoped might give me more insight into the condition.
The first huge challenge we had was persuading Dad to stop driving. He simply refused, and the process of giving up was so traumatic for him that eventually Mum had to simply sell his car. Once it was gone he became very depressed and angry with Mum.
Giving Dad a routine and sense of purpose was also really important. He continued going to church every day which was good in several ways because it gave him fresh air and exercise and allowed him to socialise. When he struggled to find his own way home, his good friend Mary would come with him.
Each day I’d try to set him a couple of manageable tasks, such as buying a loaf of bread and sorting out the laundry. Once, he went to buy the bread and returned having withdrawn £300 from the bank. Fortunately that didn’t happen very often because when local bank staff and shopkeepers realised something was wrong with Dad they were very kind, persuading him to take only £10 from his account instead of £100. I remember a shopkeeper coming round once and handing over a bunch of money. ‘Kevin keeps giving us £10 notes and insisting we take them,’ he explained. Someone else returned his wallet after Dad had asked him to look after it for him.
Have any services made a difference?
Charities and local support groups were helpful but Mum fought for nearly three years to get any respite care or financial support. I don’t remember her being offered anything until Dad became paranoid and aggressive and the situation at home became perilous. I was very concerned about Mum, particularly as she was also coping with her sister’s Alzheimer’s and trying to work as well. Looking back, I don’t know how she did it.
Have any particular products or gadgets made life a bit easier?
No, there was nothing around. We left sorting out the Power of Attorney until quite late (mainly because Dad was in a lot of denial) and we were very fortunate not to run into serious difficulties.
What lessons have you learnt?
I’ve learnt how unique each dementia journey is. My Aunty Val’s dementia was very different to Dad’s, she died in April 2013 and had been living in a care home for many years. Dad survived until November 2013, spending the final two years in a nursing home receiving fantastic care. He became the beautiful, sweet person he used to be and Mum visited up to three times a day – all the staff loved her.
I’ve learnt how many kind, caring people there are in the world – people who knew Dad were always lovely but so were strangers. For example, he once got lost in Barcelona when he and Mum were visiting my brother who lived there. Mum was frantic because he had no identification on him and no wallet but a lovely couple somehow managed to work out where he was staying and bring him back! Moments like these happened a lot and could be a great comfort when you’re going through something as harrowing as dementia.
Any tips for other families?
Don’t contradict a person with Alzheimer’s. Arguing is pointless and exhausting. We all do it at first, until we realise it’s far easier – and kinder – not to bother.
Know your limits. When Dad became aggressive I couldn’t stay at home anymore and moved in with friends. I came back as often as I could and felt horrendously guilty. I couldn’t handle his incontinence either – as a nurse I’m supposed to be able to but I couldn’t. It’s important you know your limits because it’s non-stop and can go on for years. I was 20 when Dad was diagnosed and 33 when he died. My brother and I went from boys to men in the years he lived with dementia.
Talk to your employer. Many people don’t realise just how much dementia can affect family carers. Dad’s dementia affected my sleep, my mood and my concentration. You’re living with a fear that something awful might happen at any moment so it’s bound to affect you at work.
Do your bit. Do what you can to help raise awareness of dementia. Mum and I supported the Alzheimer’s Society by going on TV, and speaking to newspapers and magazines about Dad. One article we did in a tabloid resulted in more than 18,000 people contacting the Alzheimer’s Society helpline, it was good to feel we might be helping other people.
Has your experience of living with someone with dementia changed your perception of it?
Yes! I genuinely thought it was simply a matter of helping Dad to remember stuff. Once I realised the complexity of the condition I gave up trying to rationalise it and tried to just be with him. What upset me the most – and still makes me cry to this day – was being with him when he had fleeting moments of clarity. The panic he felt was written on his face though he couldn’t verbalise it, and it was a relief when it was over. It’s ironic perhaps but sometimes memory loss was the thing that saved him and us.
Dad’s illness changed us massively and in so many ways. It scared us, and it brought us all much closer together, too. As a family we can talk about pretty much anything now and arguments are resolved as quickly as they’re started. Overall, I suppose we’ve learnt that time together is precious and should be valued.