Care. A small word with many meanings, some of which I’m just at the brink of beginning to understand.
My introduction to the word ‘care’ was dripping in saccharine coated goo created for childhood entertainment and merchandising. The Care Bears have a lot to answer for, but back then I learnt a lot from Love-A-Lot Bear and the gang. Caring was about love and tenderness and feeling happy thoughts about someone. There wasn’t much to do in my youngest version of caring. It was a feeling.
This didn’t change until my early thirties. I watched my Mam change after my Dad’s diagnosis of MS. She refused to be referred to as his “carer” for a long time but it was pretty clear to those around her.
For a while, the caring role was subtle. Supporting my Dad at appointments, making sure he didn’t fall, picking up the slack with the housework that my Dad was no longer able to do. Coping for both of them.
As my Dad’s ability to do the most basic tasks shrunk, my Mam’s to do list increased ten-fold. All while coping with secondary breast cancer herself. The support they received in the North East of England was hovering around the zero mark and, whilst it has been significantly improved in Scotland, there is still huge chasms of doubt and confusion. There just aren’t the resources available to fully respond to the very different needs of each and every carer and the person that they care for.
For the first time in my life I am realising that care is not the definite article that I believed for so long. It’s confusion personified. Relationships change, people change, conditions change. My Dad has dementia now and this has created a calm chaos amongst the people who love him. What does caring involve now? How do we help him to remain Dad? How do we let him go?
For a long time, I didn’t believe that my Mam had a carer because, although I am there for her and support her as much as I can, I wasn’t an “official carer.” I guess I thought that if I wasn’t receiving carers allowance than I wasn’t a carer. HOWEVER…the wonderful people from VOCAL were very clear that I too was a carer and I was able to access support services. Their definition of being a carer is:
A carer provides regular help to a family member, partner or friend with a long-term disability, physical or mental health problem or addiction.
VOCAL gets it – and if you’re in Edinburgh or Midlothian you can access their services too.
My only advice to fellow carers is to sit with your feelings for as long as you need to, and then take a quiet peak into the world in which you find yourself. It may be cancer, or MS, or dementia, or countless other worlds which we would do anything not to be involved with. However I’m beginning to find that there are people out there who are offering the kind of support that I am – and we as a family – are looking for.
One such project is from Katherine Brown’s Beauty and Utility Arts. A Book of Me is designed to help people with dementia in a tradition that is as old as time. Storytelling is the key component – sharing stories between people with dementia, reminding people of their lives and what they have experienced, informing care and medical professionals about who they are looking after, and serving to support the families and carers. They’re currently crowd funding to widen the project beyond Hinckley, and I watch with anticipation to see what A Book Of Me achieves. Help Katherine achieve something wonderful by visiting her crowdfunding page.
As a family whose bond is unbreakable, we still struggle sometimes to move together in the same direction at the same time. To be a carer is to work (and no doubt about it, it’s the hardest work imaginable) through a fog which clears only long enough for you to recognise that the horizon has changed, and then the sea fret covers us all again.
And yet, there is something that keeps us strong. It anchors us back to each other, the people in the photographs from the good old days. Back when we were in shell suits and I was holding onto Funshine Bear. The definite article. The love. The care.
Image: David Anderson