The second Hackney Dementia Festival takes place next month. Patricia Sanders writes here about her mother’s dementia.

My mother began developing the signs of dementia seven years ago, shortly after my father died. My family all dismissed it as something minor, but I wished we hadn’t. If we had noticed it earlier and treated it more seriously, things would have been much better. The experience showed me how important it was that I take my health more seriously as I get older.

Diagnosis

My mother had mood swings, memory loss and did not know the difference between day and night. She was very restless, spending all night awake and walking around the house, constantly refusing help from anyone. All my family thought it was a thyroid problem, it was only when she went into hospital after an accident that we were told she had dementia. It was while my mother was in hospital that doctors began arranging for social services and district nurses to give her the assistance she needed until she went into permanent care.

Lack of awareness

My mother’s dementia was extremely difficult for me because of my lack of awareness about the condition. I wasn’t prepared for her to start forgetting me and my brother when we went to visit her and as a result I became extremely distressed and started blaming myself for not noticing the signs sooner. If I’d had a greater awareness of the condition before my mother developed it, I would have coped better and been more of a comfort to her in her final years. Dementia caused a lot of stress and anxiety in the family with arguments about how best to help her. While my mother was cared for in homes until she died, our family didn’t receive much support about how to cope with a family member suffering with dementia and I think we really suffered because of this.

The need for support beyond family

By the time we had a decent understanding about how to cope with my mother’s condition she was in her final days and we had spent a year feeling uncertain and afraid of what was happening. It was this lack of support that encouraged me to consider my health more seriously and made me realise how much more bearable the experience may have been if we’d had wider support beyond just family and friends.

Hackney Dementia Festival: Thursday 16 May – Wednesday 29 May 2019
Further details at www.hackney.gov.uk/dementia-festival