When his mum Barbara, 93, was diagnosed with dementia, music producer John Ratcliff found a special way to express some difficult emotions – and to help other people with dementia too.
How was your mum diagnosed?
She was driving home from the supermarket one day when she went into the back of a parked car. Fortunately no one was hurt but both cars were write-offs and Mum was traumatised. She’d always loved driving and was a very safe driver – she’d been an ambulance driver during World War II and drove us everywhere as children. The thought of giving up her car had been unthinkable, until now. The accident proved to be a wake-up call; she handed her car keys over readily and within a few months she’d been diagnosed with vascular dementia and Alzheimer’s. It’s possible she may have suffered a mini stroke (a common symptom of vascular dementia) when she crashed the car, although we’ll never know for sure.
Looking back, were there any signs before that she was in the early stages of dementia?
Yes, the diagnosis didn’t come as a huge shock. She’d become very forgetful, though I did think this was inevitable at the age of 90. I used to call her every day and she’d sometimes say she hadn’t seen anyone for days, when I knew she’d had lots of family visits. She’d also had a couple of very nasty falls (which may have been mini strokes). Once, she fell head first into a writing desk, another time she gashed her knee very badly. We’d all been worried about her driving and tried many times to get her to stop, but she was fiercely independent and refused.
What happened after diagnosis?
Fortunately, we didn’t have to make any radical changes to Mum’s life because she was already living with my brother Peter and sister-in-law Janet. They’d built an extension onto their house a few years before where Mum lived in a self-contained flat, and we assumed this would keep her safe.
Although Mum seemed to accept the diagnosis, accepting that she couldn’t drive again was more difficult, particularly if she was feeling stressed. ‘I’m going to buy another car,’ she’d say in a fit of pique, then we’d have to persuade her it wasn’t a good idea.
What were the main challenges you faced and when did they happen?
Mum went downhill quite quickly after her diagnosis and because I live 300 miles away, most of the burden of caring for her fell on my sister-in-law Janet and brother Peter. I visited every month to give them a much needed break, but Janet was an absolute saint, I honestly don’t know how she coped.
One of the main challenges was that Mum wouldn’t feed herself, and when Janet did give her a meal she’d forget and then ask ‘where is my breakfast?’ Janet also had to help her with washing, dressing and hygiene which was physically exhausting, but perhaps the biggest challenge of all was Mum’s paranoia. She was convinced there was a man in the house who was eating her biscuits, stealing her spoons and TV remote control and going into her locked writing desk.
She started carrying an enormous hand bag around with her containing anything of any value to her. If we took her to a restaurant, the bag went too. I can’t imagine how frightened she must have felt and nothing we said or did could reassure her. She was eventually prescribed a sedative drug to ease the paranoia and it did take the edge off it.
But eventually her needs were so great that Janet and Peter couldn’t cope anymore. We’d always agreed that Mum would never move to a nursing home but things change, and from a practical point of view it really was the best solution. I think Peter still feels guilty about it but I honestly don’t think he has reason to. The care home is perfect, Mum has a room overlooking the garden, she has good friendships and they do activities every hour of the day which keeps her mind alert. Her paranoia has lessened, she’s not distressed anymore – she really does have a new lease of life.
Have any services made a difference?
Carers visited her twice a week when Mum was living at home, but after a particularly nasty fall she had daily visits from a district nurse to change the dressings on her leg wound. Ironically, she actually received more care for her physical injury than for her dementia.
Have any particular products or gadgets made life a bit easier?
Yes, it surprised me how much little things could help. For example, we put a large memo board (with felt pen) in her lounge, with daily reminders and useful information which definitely seemed to ease her confusion.
Any tips for other families or advice you’d like to pass on?
Caring for someone with dementia can be so hard, lonely and frustrating but there’s also the odd bright spark. For me, the bright spark came when Mum suddenly started to talk about my father. Dad died from a brain haemorrhage when he was only 44 and I was ten. His death was never talked about – it was too painful for Mum. Then one day I took her out for lunch and she opened up, telling me all sorts of things about Dad and how they met, which I was able to share with Peter too.
I’d also say that a strong family can make the dementia journey much more bearable. It’s definitely brought me closer to my brother. Peter and I were always very different and without Mum’s dementia I don’t know if we’d ever have become so close. But now we have, and I’m certain we always will be.
John with his mum, dad and older brother Peter
Has your experience of living with someone with dementia changed your perception of it?
Several years ago I helped to care for my mother-in-law Beryl who also had dementia so I did have some understanding of the condition before Mum was diagnosed. Beryl taught me a lot about the illness but her symptoms and behaviour were totally different to Mum’s. I suppose Mum’s dementia taught me how important it is to keep an open mind about what might happen on the dementia journey because it really is a unique experience for everyone.
What lessons have you learnt?
To bite my lip and be as patient as possible! I think it’s also important to find a way to express yourself emotionally. The first time I realised Mum didn’t know me anymore was very upsetting. I’d gone to visit her in the care home and although she was calm and smiling, she gazed right through me. We had a coffee together but she just sat and stared, saying nothing.
As soon as I was outside the care home I wept, feeling completely helpless and so sad. On the drive back home I decided that the best way I could work through these feelings was through music. I would write a song. I stopped a few times on the motorway to scribble down ideas and then spent the following day in my studio. Into The Black was the quickest song I’ve ever written and so therapeutic – every line made me cry. I hope it resonates with other people too, because I know that so many of us are currently going through exactly the same experience.
I’ve come to terms with the fact that Mum might not know who I am anymore, it might be painful, but it’s okay because Mum is one of the lucky ones, she’s still so loved by so many people – and always will be.
Into The Black by John Ratcliff can be downloaded from Amazon or iTunes for 79p.