Dementia -we may not have a cure at this time,there is much you and Ican change while we wait

Hi

Dementia alone brings enough to the table, a journey without the best of help, understanding advice, friendship and opportunities is I feel an impossible task.

Firstly we should be allowing all the chance to live, love and cherish every moment they can. For mum and I and too many others it’s not like that. A big part of this comes down to understanding from within and the understanding of family, friends and people who become involved in our care.

I am grateful for people who understood the challenges we faced, we needed them and more like them should be encouraged, the ones who added no value only increased our anxiety loneliness and voice. We can’t at this time cure dementia that is the challenge for researchers across the world, but why did we like so many others become so lonely and isolated - we can cure that surely.

My mum never deserved to be lonely she was too kind and caring to others for it to happen. The phone stopped ringing, the door stopped knocking and the chances to have a better life decreased. I remember one Saturday night hearing the sound of a taxi and people coming home from a good night, the laughter and the joy – a reminder of what was missing from our life and house. For the previous 3 years I had only left our house at night 9 times and those were to do talks and I had switched my respite hours from day to night to attend.

How could this mum who cared for so many and even a son who had many friends be left so alone and lost? Why do so many people who share their stories face loneliness isolation and a lack of understanding? Surely as a society we can change this. I sit today lonely, recovering from a struggle, missing my best friend, in many ways angry at dementia but just as angry at the things we can cure. It does not take strategies or policies to cure much of this. It takes understanding, kindness and always remembering the person, the life they led and should still be allowed to lead. As dementia over time took away o all of my mum’s memories, why did others forget as quickly?

If we keep dementia as a whisper, if we forget the greatness of people then we leave them no chance ,while the researchers look for a cure we should all be curing the parts we can - Loneliness, isolation, understanding, respect and dignity, you don’t need a researcher for them.

Tommy