James Ashwell gives a harrowing insight into how the dementia journey causes a uniquely stressful and complex set of circumstances for carers, leaving many close to despair
A devoted husband suffocated his wife then killed himself after repeated requests for help with her care fell on deaf ears.
A loving son sets fire to the family home after being driven to the edge by his mother’s hallucinations.
An elderly man walks into a care home and shoots his wife dead at point blank range to ‘end her suffering.’
Tragic news stories like these, although fortunately rare, serve as a stark warning of what can happen when a dementia carer reaches breaking point. I know from my own experience how uniquely overwhelming it can be to care for a person with dementia. When I was caring for Mum there were days when I’d shout, argue or bicker pointlessly with her. Sometimes I’d lock myself in the bedroom with a newspaper and try to pretend I couldn’t hear her asking, for the twentieth time in one hour, what time my sister was arriving.
Did I feel guilty? Constantly, and I was luckier than many family carers because my brother and I shared a lot of Mum’s care in the early stages, which meant I did get some time off. We were also lucky to be able to afford paid help too when it was needed. So the fact that there were still moments when I simply couldn’t hack it made me feel even more useless, and in awe of those who managed to keep plodding on.
Perhaps it’s the multi-faceted nature of the condition itself that makes the dementia journey particularly tough on carers. First, there are physical care duties to consider; simply keeping a loved one clean, comfortable and safe from falls and household accidents can be an all-consuming task. Activities which used to require no thought at all – such as making a cup of tea – can quickly become fraught with danger.
Then there’s the emotional heartbreak, the so called ‘living grief’, which runs alongside every physical change the carer learns to cope with. For example, the realisation that your loved one can no longer dress themselves, or needs help with their personal hygiene, signifies not only another duty to add to the rapidly growing list, but another painful reminder that the person you love is slipping away.
‘You’re the parent now,’ people would say when I discussed the difficulty of getting Mum to brush her teeth. Friends with young children sympathised if I moaned about her inability to sleep through the night ‘My two year old is just the same,’ they’d say. Except caring for a loved one with dementia isn’t ‘just the same’ as caring for a child – it’s actually far tougher. Whilst it’s true that some of the practical duties, such as getting them dressed, persuading them to use the loo or eat some veg with their dinner, are similar, the emotional complexity of doing all this for someone who was once a fully-functioning adult, a person you admire, respect and love in equal measure – is far, far greater.
‘I do get fed up with people telling me that my mum’s behaviour is the same as their two-year-old,’ admits Caroline, a visitor to the site who’s currently caring for her mum Alice. ‘For a start, it doesn’t take two adults to put a toddler in the bath or change their underwear – but that’s what’s often involved with Mum.’
Besides, parenting a child gets easier with time, I’m told. Rewards come thick and fast. Watching your child grow, develop and become their own person, may not be without drama, stress and sacrifice, but it is generally speaking a joyful, fulfilling experience. Watching a loved one living with dementia is none of these. It gets harder, not easier and, although there can be happy, joyful moments, there is no happy ending.
Of course as the person you love becomes more and more vulnerable, roles do inevitably change, but this process is painful and complicated – not a simple matter of ‘swapping roles.’ ‘I wouldn’t dare speak to Dad as if he was one of my children, I’d get a severe tongue lashing if I did,’ Kathryn, a customer at Unforgettable recalls. ‘He may be incontinent, frail and very confused, but he knows instinctively that he’s still the boss – and so do I.’
Instead, most family carers walk a daily tightrope, gripping a balancing pole of guilt, grief, loneliness, huge financial worry, shame and sorrow. On good days they may stumble, but manage to hang on. On bad days the weight of the load is all too much…and unsurprisingly, they slip and fall.
But then as the dementia journey moves into the later stages it offers a ray of light… for the person with dementia at least. Many family carers testify that once their loved one has deteriorated enough to lose all insight their quality of life seems to improve. Providing they receive good quality care, they can remain comfortingly cocooned in a world of their own, immersed in memories of times gone by. In other words, the worse their dementia gets, the better it may be for them.
Unfortunately, the carer’s journey contains no such ray of light. Instead, their burden simply continues to increase, and if professional care is now required (as it often is), the red tape and financial burden can quickly become intolerable. Homes must be sold and life savings disappear as quickly as any hope they may once have had for a brighter future. The average dementia journey lasts between 7-10 years so is it any wonder then that at the final hurdle, a few weary, worn out individuals reach breaking point? No. In fact, the only wonder in my mind is that far more don’t.
So isn’t it time we spoke up on behalf of this silent majority of carers who are probably all too tired or too sad to do much more than simply get through each day as best they can? Without honest, open debate about the daily challenges they face and the daily hardships they endure, how will their lives ever improve? As a caring society, we ignore their pain and suffering at our peril.
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