Mother of all Lists — The Imperfect Art Of Being A Carer

The Imperfect Art Of Being A Carer

This week is Carer’s Week, and to mark it I am delighted to share this post from Penny Wincer who cared for her Mum and now cares for her son. Though her experience is uniquely hers, she shines a light on the bigger picture on how under cared for carers are.
First as a teenager to my mother who had severe depression and now to my 10 year old son Arthur, who is autistic and has learning difficulties.
Although that’s what I was doing, I didn’t hear the term “young carer” until I was around 30, many years after my mother had died.
As a teenager, I didn’t have the vocabulary to describe how things were in my house. Although some of my friends were aware my mother “wasn’t well”, it wasn’t something I felt I could discuss with anyone.
My mother began to have severe panic attacks when I was 11. By the time I was 13, she had experienced a breakdown and was severely depressed. She would be in bed for weeks at a time, unable to engage with the world at all.
From the time I was 12, she was in and out of psychiatric hospitals regularly.
My parents were divorced and my dad lived in the US, so we stayed with friends or had a babysitter stay with us while she was in hospital in the earlier years.
Caring for her, and looking after myself happened gradually. At first it was finishing off the dinner when she fell asleep, or catching up on laundry I realised hadn’t been done. Eventually I was catching the tram down to the supermarket to do the weekly food shop and encouraging her to shower and eat.
My mum mostly stopped engaging in anything to do with my schooling. It was up to me to get myself to and from school, do my homework and anything else that was expected of me. I had always been a straight A student and though I never missed school, my grades began to suffer.
I would want to believe my mum whenever she told me she would turn up to events to watch or collect. But eventually, I accepted that I could never rely on her. It was easier than being let down constantly.
I learned to not reveal any of my feelings at home. If I was ever upset, angry or anxious, my mum would blame herself and would spiral into a worse state. So I became completely self reliant.
My mum made her first suicide attempt when I was 14.
After that point I felt I could never relax. I expected to find her dead very time I came home from school.
When I was 15 I realised I couldn’t continue on this way and I asked my Dad if he would pay for me to go away to school. Fortunately for me he could afford it and was very supportive.
My mother was furious at first and told me it would be my fault if she died.
I stuck to my decision with the support of extended family and eventually my mother could see that I had made the right choice. My grades went up and I felt more cared for than I had in many years. I will always be grateful for that school for providing a refuge for me.
My mother’s and my relationship improved significantly when I wasn’t caring for her all the time. I returned to live at home during university and we had a lot of good times as well as bad.
Six weeks after I moved to London, after graduating, my mother died by suicide.
I was devastated. But I also had so much gratitude that she had made it to see me graduate from university, when I had been certain she would die when I was 14. I was so glad I had her for all those years.
10 years later I gave birth to my first baby, Arthur.
When Arthur was diagnosed as autistic when he was 3, one of the things that terrified me was that I had already been a carer, and I knew that it was going to be so challenging.
One of the biggest challenges was caring for both him and his little sister (who is not disabled), when their needs were so different.
I’m a single parent, my children attend two different schools and Arthur’s needs remain as high as ever at 10 years old. Life can be busy and complex.
During lockdown we have been fortunate that Arthur’s school (a specialist ASD school) has remained open for the highest need children.
I have between 9.30 and 2.30 when he is out of the house where I cram in full time work and homeschooling my daughter, as well as any errands we need to do, as I can’t take him on any.
Though our lockdown might look on the outside, similar to most, as a carer, I usually use my time at work and when I have childcare to get a break from caring. When Arthur is at home, it’s challenging to get anything done, so I now have to cram my work hours with everything other than caring for him.
On top of school, I usually have 15 hours a week of a carer so that I can work full time. Our carer has been sick with Coronavirus since mid march.
We have managed to continue with the kids seeing their Dad every other weekend, so that’s when I get a break.
One thing that I had really taken away from my mother’s experience, was that she really regretted not taking better care of herself. She had realised too late the dangers of putting herself last. And in the end, we all suffered because of it.
I was determined to take care of myself now that I was a carer again.
For me that has meant continuing to work in a career that I love, getting as much support and childcare as I can afford and learning to ask for help from friends, especially when I became a single parent when my children were 3 and 5.
Being a carer is not always what people might think it means.
Many people assume caring is all about personal care – bathing, dressing, feeding. But though that is often part of it, it can be far more complex than that.
Carers are legal advocates, medical care co-ordinators, physical and occupational therapists, speech therapists, play therapists, cooks, drivers, companions and much more. It is far more than the time you spend in the physical presence of the person you support.
There are around 7 million unpaid carers in the UK at any one time.
Right now during the pandemic, it’s estimated that number has risen by 4.5 million.
70% of carers have seen an increase in their caring responsibilities
Many have lost some or all of their support due to closures of local services.
Carer’s Allowance, the benefit that you can claim if you care for someone more than 35 hours per week is £67 per week. It is the lowest of all benefits in the UK.
8 out of 10 carer’s feel lonely or isolated as a result of their caring role
Many people don’t identify as carers until they are experiencing burnout and are desperate for help.
40% of disabled children live in poverty. One of the reasons for this is that access to childcare for disabled children is almost non-existent meaning most mothers of disabled children find it really difficult to work.
Overall 58% of carers are women but that rises to 72% for those who are caring more than 35 hours per week.
Anxiety levels in carers are twice as high as the general population.
What most carers say they need is more regular breaks from caring.
The next most important thing for carers is more understanding from society.
Sharing the stories of carers can help shine a light on what carers do, day in and day out.
Social Care has been underfunded for years now and the consequences of this are enormous for disabled and elderly people as well as unpaid carers.
Carers are paying too high a price, in terms of their emotional and physical health, as well as in lost earnings, for the unpaid work they do.
Most carers don’t want to stop caring. They want to be the person supporting their loved one. But they cannot do it alone, without support.
It’s time we as a society care for the carers.
** Penny’s book ‘Tender: the imperfect art of caring’ is out now. **