Today we would like to recognise Kitty and Caroline, who have been an inspiration for the project and for their work around human rights. Kitty has sadly passed away, but we would like to thank Kitty and Caroline for all that they have done. Caroline is an Involvement Network member at the ALLIANCE and has worked extensively to promote human rights and raise awareness of dementia and of the caring experience. She recently shared their story in a short film to increase people’s understanding of what human rights really mean for people as part of the Scottish National Action Plan for Human Rights, and is part of an inspiring legacy.
We would like to take this opportunity to express our heartfelt gratitude to Kitty and Caroline for sharing their beautiful story which has always been about love. The whole team are saddened by Kitty’s passing and would like to pay tribute to her legacy by sharing their story in Caroline’s words.
What do human rights mean to me?
Many words are offered to describe human rights with the main ones being around dignity and respect, however for me, human rights should be wrapped around individuals in a person centred way.
For people living with dementia, a diagnosis can often mean falling into the world of human services, usually controlled by governments, swallowed up by information, organisations and paid people and often expected to fit into services because they already exist.
My mum was diagnosed with Alzheimers in 2006 and dad withvascular dementia in 2009 so our whole family have lived with the impact of this illness for a long time. Dad died in 2012 he lived in the same care home where mum still lives. When considering what human rights would mean to mum who has not used words for 3 years, I knew she’d inspire me.
Human rights have to be meaningful to an individual. Being person centred and discovering what matters to them is at the heart of human rights. When a person is really listened to and we discover what matters to them, treating people as equals and ensuring they remain in control will balance out, and I believe make their journey more bearable as the illness progresses. It is one thing knowing what human rights are, however it is all too easy to get swallowed up in assessments and tests, and mum moving to a care home was fraught with anxiety for everyone. A balance needs to be sought from all that once was familiar no longer being so.
Mum never used the words human rights, yet dignity and respect are in her bones and throughout her life, she naturally treated people with great dignity.
Human rights is such a big issue made up of many small things. For example in some care homes, we still see people sitting around the halls, often not stimulated, getting outside for fresh air or having choice. We need to be honest, staff in care homes are paid far less than they should be. They are caring for our most precious family members and there simply are not enough staff to provide some basic human rights due to numbers of residents. If we want to change things, lets have conversations about difficult topics which are all human rights such as choice, intimacy, emotions and feelings.
If mum was still living at home, she would have her own front door key, independence and choice. Living with advanced Alzheimer’s, she needs to fit into the routine of the care home, her bedroom locked, reliant for every aspect of her life from others. That is not a criticism of staff for some are just wonderful, there just are not enough of them to care in the respectful dignified way that our most precious older people deserve. I have spent these past few days pondering this human rights thing and as usual, like most things, the answer is right under my nose.
My eye caught the words on the candle I gave mum last Christmas.
For me, the candle represents human rights.
A candle is simply a lump of wax until we light it.
It then shines a light on the way things really are.
We need to shine a light on the issues and human rights around people living with dementia and their loved ones.
We need to have faith in those in positions of power, who make decisions with and not for us and not just in the run up to a general election.
We need hope that tomorrow will bring with it the opportunity to be asked what our dreams are and to be supported to make them happen.
Hope that we don’t need to fight as all our energy is used on dealing with a progressive illness that steals our loved ones away.
If you have cancer, a hospice is provided, free of charge.
When both my parents moved into a care home, they had to sell their family home to pay for it but after 56 years of married life, lived on different floors in single rooms, in single beds. That is not ok.
Over the years they have collectively paid approximately £80,000 for their care, in an environment that was nothing like their own home.
That is not ok. Things need to change, dementia is now a global issue, and we need equality for every single person.
The final word on the candle is love. We have complicated this human rights issue for where there is love, there is also hope and faith.
We need those who support us to love what they are doing because we just know when we are loved and cared for.
I’m curious and I wonder if we were brave enough to use the love word and demonstrate how valued and precious the people we care about and for, not only will our hearts change but the world too.
So, from mine and mums perspective, we would say, be brave, shine the light on human rights using faith, hope and love and lets see what happens.
People may not always remember what you said to them but they will remember how you made them feel.