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Carol Hargreaves, member of the EWGPWD, shares some of the daily challenges of living with dementia

Thursday 13 February 2020

I must say that working with the European Working Group of People with Dementia (EWGPWD) has been a privilege. My life started to change. I have been in hospital a few times which I absolutely hate. Although I accepted my illness many years ago, lately it has been quite scary. Working with the EWGPWD keeps me motivated and feeling well. The knowledge that I have gained has allowed me to help people outside our group which still amazes and encourages me.

On two occasions in the past, I just started talking with people who were working in an airport. I explained why I was travelling and just got into a conversation. These ladies later phoned me to thank me for sharing my experiences of living with dementia. I had given them both my card and I was able to explain what had happened to me and what support I had found. Thankfully they were both able to get the support they needed, in turn.

I want to mention my dear friend George, who has been fantastic, not only in supporting me and attending EWGPWD meetings with me, but who is also appreciated by the entire group, because he is just so helpful and uplifting. Sadly, my uncle has just passed away with Alzheimer’s disease. My family is grieving and I am sad to have now lost 8 out of my 9 aunts and uncles on my mother’s side. Thankfully, my mother’s mind is as sharp as a needle, although unfortunately she has some other health issues. I am still able to be there for her. It can be hard but as I only have one sister, we need to work together to support our mother. Getting involved with the Scottish Dementia Working Group and then the EWGPWD, has given me the strength and courage to continue to be there for my mother and for others.

I want to sincerely thank everyone I have got to know so well in the past 11 years. When I was first diagnosed, I honestly thought my life was over.. I feel like I got my life back through working with these groups, and that I have a more fulfilling and better life as a result.

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