A daughter’s experience; living with dementia

Written by Laura Hodgson

Laura Hodgson

Laura Hodgson

How can I describe who my mother is? To say succinctly who she is, who she was, who loves her, who she loves and what she values is a heart-wrenching exercise and feels strangely intrusive. My mother can no longer write nor can she easily articulate her thoughts and needs and certainly cannot share memories. I must do that for her. When my mother finally had to move out of the home she had shared with my father for over forty years into her new home, a residential care home for people with dementia, I tried to say who she was in preparation for her move. When the decision to move someone finally comes it is out of necessity and there is very little time to prepare.

My mum was moved five years after her diagnosis and after my dad had heroically looked after her with the support of carers, family and friends. Finally however her condition reached the stage where she needed professional nursing care. The Friday before she moved I wrote a simple profile of my mother. This was something which I instinctively felt I needed to do to make the transition easier. Without insight into who my mum is I worried that she would be a stranger in her new home. What does she like? Above all, chocolate, but also strong coffee, weaker tea with no sugar. Cats and small children. Wine with her meal. Who are her friends? There have been many over the years but Ros, Michelle, Al, John and David would all be visiting her. What does she enjoy? Gardening and cooking and being with her husband. What will annoy her? Intrusion, over-familiarity, aggression, a lack of respect for her personal space. What does she value? Intelligence, manners and humour. Did she have a sense of humour? Yes, and it is still there if you take the time to find it. All these things I tried to capture in her profile. Briefly and simply it gave an insight into a very fragile woman suffering with advanced dementia. Of course a profile cannot prevent her irritability or her completely uncharacteristic, but now frequent, temper tantrums born out of frustration with the hideous illness that she still tries to fight, but her profile does go some way to explain what might cheer her up, calm her down, engage her or relieve her distress.

A profile is not a panacea but it will provide the foundations for the new relationships which my mum will need with her carers for a more fulfilling future life. It will provide insight into who they are cleaning, feeding and talking to but most importantly it brings greater dignity to my mum and contributes towards a much more meaningful and dignified life where both these things are too often scarce.

You can learn how to create your own one-page profile and read more stories of people that have used them from birth to end of life at http://onepageprofiles.wordpress.com