Dementia - Journey of a Carer

This post is part of the SITS Girls Back to Blogging Challenge – Day 3. It originally appeared on this blog in 2009.

I thought I knew all there was to know about dementia and what to do, but each day seems to bring new lessons and learning and insights that I hope to capture in the blog, but also as a means of unraveling my own misconceptions, guilt, joy, ahha moments, and look at a condition that so many people seem to be facing and effected by.

As a carer, my journey started in small ways that I wasn't even aware, but were excused by 'oh its just been misplaced' or 'shes just trying to make you feel bad', but very soon became cause for concern and action needing to be taken. Some areas have been sorted and taken care of quite easily but the social services and care system can be a mine field. Apart from the charities that provide advice there didn't seem to be one voice of information and help that didn't need unravelling, along side support for the carers.

We were assigned a social worker who had a mother who was going through the same thing, but rather than relating it felt as if to get a response or help my mother had to be totally isolated and a urgent danger to herself. There were too many departments to deal with, too many cut-backs and no one seem to take any notice of the carer and the experience and talk to us rather than talk at us.

Life for a carer is never the same, all the things you took for granted become a luxury, there are expectations as to what you can or should do. When your worn out from sleepness nights trying to convince the person that you are caring for that there aren't insects crawling on the floor or finding ways not to agree that there are insects but you will do something about what they think they can see, and then bit your tongue when they shout at you because you didn't do it properly - it can be hard going. Its vital and can be a welcome release to talk to someone else who is a carer.
Millions of carers and health professionals voice the same concern for more research on the condition and support for carers who are saving the Health Service both money and resources. I believe art and creativity can have an impact on their quality of life and currently looking into work being done internationally with creativity and how we can measure impact on mental health and well-being, and I am also working as an artist providing art sessions for the elderly with dementia. I regularly post on my YouTube Channel videos of working in your art journal to use it as a way to express feelings that you may have in a caring role.

I have learnt so much from those who participate in my art sessions who apart from the dementia and the way it manifests itself in their life are really lovely men and women with so much wisdom and experience. If you want to share your story, contribute or find out more information join my Arts in Health Network.