We were bickering, squabbling and yelling at each other
Even the happiest of families can find their love for each other is tested by a dementia diagnosis. Here, a member of The Unforgettable Caregivers’ Club reveals how she and her sister managed to stop fighting, and offers some advice based on what she learnt.
When our father was diagnosed with dementia, my sister and I were shattered but vowed to stay strong. We would, we agreed, share the burden of care and present a united front. After all, we both loved our dad desperately and were in this together.
Yet within a few months my sisters and I were doing what we had always done best…bickering, squabbling and yelling at each other. Our fights could revolve around anything from the most trivial issue, such as who’s turn it was to check Dad’s fridge, (‘if he gets food poisoning it will be your fault,’) to who should have power of attorney (‘you’ve always been useless with money, Dad would want me to do it’).
As his condition deteriorated, one particular subject began to surpass all others; where should dad live?
Our differences were further exacerbated by the fact that the dementia journey isn’t only long – Dad’s lasted 11 years – it’s also consistently inconsistent. For example, Dad could appear lucid and upbeat when my sister visited in the morning, but when I arrived at lunchtime, he could be on the verge of burning his kitchen down or causing a flood in the bathroom. Understandably therefore, we had our own views about how to keep him safe. Should he continue living at home, as my sister wanted, or should we persuade him to consider residential care?
We couldn’t agree and in the end I’m sorry to say our dad was Sectioned under the Mental Health Act which was a harrowing experience for all of us, (especially dad) but it did mean that the decision about where he should live was taken away from us. Instead, the experts had the final say and they decided dad needed nursing care.
Dad went into a care home, which was what I had wanted, but I can’t say it made me feel good to have ‘won.’ Instead, I felt guilty and embarrassed that we’d both somehow let dad down and he’d had to suffer the trauma of being hospitalised against his will.
One day, I decided to confide in one of dad’s carers at the home, I admitted how awful I felt about the whole experience. To my surprise she took everything I said in her stride. ‘You’d be amazed how often I hear the same story my dear,’ she said simply.
It was such a tonic to hear those words, to have it confirmed that we weren’t the only family in the world to be finding this journey such a struggle. I deliberately hadn’t told anyone else because I felt so ashamed about it. That night I called my sister and we talked honestly and openly for the first time in a long time. We vowed that, for dad’s sake, we would not let his dementia destroy us. I’m pleased to say that, although we remain very different people, it was a vow we both managed to keep.
Four lessons I’ve learnt
1. The dementia journey isn’t black and white – there are grey areas – and this fact is bound to cause a difference of view and ideas. Try to see things differently.
2. Talk directly – lots of rows are the result of poor communication or interference from others. Limit the chance of this happening by agreeing to update each other regularly either face to face or on the phone, not by email or text
3. Get expert advice – if money is the issue, consider speaking to an independent financial adviser. A third party might help you come up with a more constructive plan (but make sure it’s one you all agree on!).
4. If all else fails, be the first to apologise – even if you’re convinced you weren’t in the wrong! Sometimes the only way to move forward, and change the family dynamic, is by example.
Are you in the middle of a family feud? Want to let off steam? Join our Unforgettable Dementia Support Group.