Coping with being a carer
When her mother was diagnosed with a terminal illness Jane Binnion suddenly found herself cast in the role of carer without any experience to draw on
On September 14 of this year, after 18 years of being a single parent, my daughter left home to live independently. As hard as that is, it is the plan right, we raise them to be healthy independent adults who go off and have a great life. And I had plans too, I was all set to finally give my business proper, full time attention. The same week my next closest relative was diagnosed with terminal cancer.We had already had a tough year as she had had emergency surgery in January, but was on the road to recovery - we thought.At that point I started a journey of learning to be a carer.The first three weeks I was shell shocked and running on auto pilot, doing whatever needed doing and totally stressed. I made expensive mistakes like putting unleaded petrol instead of diesel in my van and then locked my keys in it. Then the numbness started to wear off and I made a decision that I was going to do whatever was needed. I had found being a single parent isolating, but having seen the TV adverts, I knew no one with cancer is on their own anymore, the consultant made the referral immediately so there would be all sorts of kindly support kick in. But the call we got was “the waiting list is full”. And that was it. We were on our own. I am one of four children, but the others live in the US and Thailand so I had a lot to learn, by myself. Like many times in life it’s interesting to discover who stays in your life and who is too busy. It’s sad, but real life. I didn’t know who to talk to, everyone asks “How’s your mum?” and I no longer knew how to answer that question. I found myself trying to manage two homes, I am no domestic goddess at the best of times so the reality was my home became neglected. There were times when I had no food in and was just too tired to drive to the shops. The neighbour who bought me home grown potatoes had no idea how much I appreciated them as jacket spuds became my staple diet. Mostly I got my support from friends via Facebook who simply send virtual hugs without asking for anything. That’s when I decided to set up a Facebook group as a safe space to say what I needed to and where we could share tips and stories. I needed to be, at least virtually, with other people who were also carers and who understood.I called the group Learning to Care because that is mainly what I am doing. I am on a very steep learning curve. I have to figure out the best way to be there for my mum as our relationship shifts. As someone who has a habit of running around at 100 miles per hour I have learned to slow right down and reassure her, while also giving her a hard time for not eating her veg! I know it sounds obvious that supporting someone at the end of life is not at all like parenting, but I didn’t know that. I am learning it is simply the other end of the life cycle. It’s not a drama, it’s totally normal and if anything we learn to be in the here and now. Friday night is now sitting on the sofa together with half of shandy and falling asleep in front of The Brokenwood Mysteries, and it’s OK. But it’s still hard, I’m still out of my depth most days. I have had to learn to respond to my mum’s vulnerability in a way which ensures she maintains her dignity and I have had to learn to inject her, as someone who hates needles that was never on my bucket list. The real stress definitely comes from the failure of organisations. I have had to learn to navigate a whole new system with no guidance except from other carers. Being a carer also means being an advocate. I’ve noticed my tolerance for people who don’t do what they say they will is rapidly decreasing, and how so many organisations in the UK simply are not set up to do the right thing by their customers. Just take the bank; can we get them to allow mum access to her savings without her going in? Can we heck as like. It was totally by accident (my mum would call it divine intervention) that I happened to be on a course with the Sue from St John’s Hospice. I cried all over her on the first day and so found out how we access the day hospice services, a great resource I knew nothing about. The fact services are in competition for funding means the first agency left us with nothing rather than signposting us to St John’s. I have also learned to ask for help, often I don’t get it but between mum’s church and the good people of Galgate, we seem to have managed to pull together a smashing little team. They say it takes a village to raise a child, well the same applies to end of life but so many don’t feel they can ask for help believing they have to do it all themselves. If we are going to stay well enough to care for the most vulnerable we have to be supported and take care of ourselves. We all know it but still self care falls off the agenda time and time again. I do get weary, weary of meeting people and taking time to put plans in place that then just seem to disappear into thin air. I feel lucky that I have a sister even stroppier than me so that every now and then when I am about to give up on organisations doing what they say they will, my sister from the US phones and gives them hell. But it shouldn’t be like that should it? It’s a great sadness for me is to know there are many people out there who do not have an advocate, who do not have a friend or relative to challenge decisions made from sheer laziness. Truthfully I am so glad to be here. I am glad to be able to do this with my mum. It is tough because our society is not set up to support the carers; we very much support the system.