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Why are many of the lives of carers in Wales hidden?

The theme of this year’s Carers Week is revealing the hidden lives of carers. The biggest question is why caring, something done by over 600,000 people in Wales according to the latest research from Carers UK, is not more widely acknowledged by the general public. Especially when they are as likely to have been a carer as to have not been a carer at some point in their lives.

Talking to carers, there appears to be a number of reasons. Many people see caring as part of the family contract and that loving and supporting their closest relatives is a duty. For others, it’s a deeply private affair that is too close to who they are and do not wish to share that part of themselves. One of the most significant reasons is that when a caring role comes to an end, it is a carer’s duty to themselves to mourn their loss but move on with their own lives. Separating themselves from the person who was a carer first is a necessary element of allowing themselves to move on.

This is absolutely right for each and every individual who has to do what is best for themselves.

What this does mean is that those experiences are lost. The person being cared for is likely not to be in a position to celebrate the great deeds done to support them. The person who was in a caring role justifiably moves on and often chooses not to discuss the support they gave. It becomes a memory not shared with the world and other people cannot benefit from the wisdom and experience earned through caring.

With this in mind, I want to share the story of my Uncle Michael. When his mother died, he took on the responsibility of being his father’s primary carer supported by his brother and sister and his nieces and nephews. What started as a bit of shopping and paying the bills turned into an intensive caring role as his father, my grandfather, was lost to dementia.

There were some wonderful moments. For instance, when his father suffered from shingles he was taken back to his time in World War II. For three days, Michael and his father army crawled around their house fighting a war that had long passed. However, it was a time of no pain and much laughter as the man who was came back in an odd sort of way.

There was also a lot of difficult times. Like many people, he worked a full time alongside his caring responsibility, using his entire annual leave to cover doctor’s appointments or general spells of ill health. He felt the financial pressures of covering the necessary additional costs of caring and the physical and emotional toil of having to fulfil many of the basic functions that is needed when someone needs a high level of care.

He did not share these thoughts and feelings with others. It was rare for him to tell his employers of his additional needs and tried to protect his other family members from the more difficult experiences. When his caring journey ended, he did not talk to anyone about all the remarkable efforts he made and chose to only celebrate the memory of the man most dear to his heart. His journey, like so many others, never revealed to world.

He would never admit to it but he was lost for two or three years after his caring journey ended. The drive to care became a piece of him that he missed even with the hardship this sometimes caused. It was something that he always identified with and inspired me when I have taken on caring roles in my life.

Michael passed away on the 27th May after a short fight with cancer. Much, if not all, of his caring journey would now be lost if it were not for the fact that I was there sharing in many of these experiences.

His story is a paradox. It is incredibly special as it is one example of what unpaid carers do each and every day and yet it is not unusual as this is what so many carers do. However, it is one hidden story that identifies why being an unpaid carer is so often hidden from society.

So today let’s celebrate all those who have cared, are caring and will care in the future and thank those who are standing up this week and saying ‘I am a carer and this is what I need’ or ‘I was a carer and this is how it affected me’ as each voice adds to the clamour to give carers the rights and support you need today and in the future.

Carers Week is about special people. Let’s make sure everyone knows who we are.

Edward Grace – Campaigns and Communications Officer

Writers Note: I would like to thank my Mum, Uncle Eric, sisters and all my cousins for allowing me to share Michael’s story so close to his passing. Michael is much loved and will be missed by all of us every day.

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