To mark the launch of We Need To Talk About Caring we’re posting the experience of sandwich caring from someone in our community – a female, working in production as a Director / Writer… We thank them for sharing their story.
What is your experience of caring / looking after someone?
I have recently come across the term ‘sandwich-caring’ and that definitely describes me at times. I have a three-year-old son and my mother has early onset Alzheimer’s, she requires 24-hour care. My mother lives in Australia and I recently spent a month there, living with my mother and son in the same house. When I’m in London, my brother organises a lot of my mum’s care needs. However, we co-manage her carer rosters and payments, as well as medical needs that can take upwards of an hour of my working day.
Can you tell us a bit about your mum?
She’s 63 and a retired schoolteacher and was diagnosed with early onset Alzheimer’s when she was 60, whilst I was 12 weeks pregnant. My dad was her primary carer until he died, fairly suddenly in March last year. When that happened both my brother and I got a terrible shock at how much mum had actually declined. She couldn’t be left alone; early onset effects vision, spatial perception and it causes dyspraxia (difficulty in activities requiring coordination and movement) on top of the usual confusion. She needed help to do even the most basic of tasks. Because of her relatively young age, in Australia Mum gets support from the National Disability Insurance Scheme that provides funds for her in-home care. But setting that up was basically a full-time job, and caused both my brother and I huge amount of stress.
How many hours each week did you provide care for your mum?
In Australia, when living with mum, I provided overnight, early mornings and weekend care – as well as full-time care for my son (we have no childcare when in Australia), except on weekends when my partner could be there too. Proper sandwich caring!
Do you mind sharing how you managed to balance your care for her with your work?
Well frankly, I just didn’t! I was meant to be doing a new pass on my feature treatment. I just squeezed in a session late one night in the first week and then mum had a fall and had to go to hospital, so that just made it completely impossible. I had to be really up front with my producers that I wasn’t going to meet this deadline. They were very understanding, and I’m still incredibly thankful for that.
The emotional toll of living with someone with dementia, even for a short period, cannot be overstated. I didn’t really realise how badly it would affect my ability to work. I was constantly exhausted managing mum’s behaviour – which can include panic attacks, OCD type anxiety, delusions, distress, general confusion and physical disability – alongside that of a toddler AND dealing with seeing my mum in this state. It’s like grieving for someone whilst they are still alive. Trying to cope with the slow, cruel process of losing a person you love like this was far more debilitating than I had realised, and it truly made it impossible to work. After I left I collapsed in a heap, and wasn’t able to work much then either.
Did your workplace or does the industry provide any support to help you balance work and caring?
I’m freelance so there is no such thing as paid leave. To care for my mum means losing work, momentum and money. The reality is since going to Australia pre-Christmas, I haven’t had any paid directing work, because not only did I lose out of jobs while I was there but I also lost out on pitching on jobs for the New Year. I’m only just getting back to a normal work schedule now – four months after the trip – but also in the knowledge I will have to go back again soon, to help manage her transition to residential care.
I can also get a huge amount done, despite my mum and toddler’s needs (caring can make you so very efficient and adaptable), but I wish as an industry we could talk more about the toll juggling caring and work can take on both our mental and physical health. Most people will have to take care of someone at some point in their life.
Share your own experiences by taking the We Need To Talk About Caring survey via the links below
For the I AM A CARER survey we want to hear from people who are working, or who have worked, in the screen industries who also have or have had caring responsibilities. For the purposes of our survey this does not include parenting unless the child or children being cared for have a disability and therefore require additional extra care.