This is a role that most of us didn’t chose, a role we are often thrust into. These are people we care about that need our help, so we step up and take on their care. Everyone’s story is unique, even though there may be recurring themes from one to the next.
I was reasonably young when I made the choice to drop my life in the city and move an hour away to help my grandmother. At the time there was so much turmoil within my family. My aunty wasn’t coping with her care needs and all six of my grandmother’s children decided a change needed to be made. Things were getting desperate and tensions were high. As the oldest grandchild I was unique, all my aunties and uncles had kids that were teenage to toddlers. My mother had me and my brother; I was 26 and married and my brother was 22 and he and his long-time girlfriend (now the mother to his first child) were still living with mum, but as independent as you can be in this day and age.
My husband just finished his higher learning and looking for a “real job” while he worked at Woolworths and I was starting a magical (albeit monetarily devoid) career as a costume designer for a small pool of independent theatre and musical operators. We were living in the city in my partners childhood bedroom. We had enough “stuff” and we were old enough to move out but had next to no money and almost zero monetary prospects.
My mother had been updating me on the family situation as best she could but one phone call from her, I remember vividly. I could tell she was upset and exasperated. I’m not sure how other families work but our family always fights each other on every inconvenient detail. She was tired and it was looking like this role of caring responsibility would be pushed onto her by default. She didn’t have dependant children and lived the closest.
My parents planned to have children young, they wanted the freedom you get after the kids are grown at an age where they could enjoy themselves for years to come, but they also aren’t selfish people. To me the situation seemed unfair, why should they take on the care they hadn’t planned for just because it was convenient to everybody else? Why did the rest of the family get to wash their hands of this situation, while my parents were forced to uproot their hard-won life?
After this conversation I felt so angry. I am an empathetic and compassionate person and in this whole situation was everybody being selfish. My grandmother had suffered through a brain tumour and the surgery to remove it some years earlier. Medically she was quite healthy although overweight but mentally she was traumatised, and she had essentially given up on life. Physically she had mobility issues and preferred constant company. I didn’t know it at the time, but she was barely holding on. She had convinced herself there was no reason to live and she was starting to live like it.
It was after this conversation with my mother that I realised what I had to do. I knew I had to broach the subject with my husband carefully. We had spent the last six years of our relationship avoiding the “where we should live” topic because we never seemed to agree, and this would be a huge change for us. So, I sat him down and told him everything, all the details mum had passed on to me and all the thoughts and feelings I had surrounding it. Until he said four words that I had never expected.
“We should move in.” Followed by a pensive silence.
I’m not sure what I was hoping for, but I was not expecting this response.
That one moment of calm then turned in a few weeks of chaos as things got moving. It took us days to deep-clean grandma’s house (she was living in terrible conditions), days more to assemble furniture and purchase home items (she had next to nothing) and in the end we still realised we had months, even years of work ahead of us.
Her house was falling apart around her and almost everything she owned needed replacing due to age or damage. More importantly it suddenly struck me how bad she was. She never left her room, let alone the house. She just watched TV all day and had her daily activities planned down to the minute (help us all if things had to deviate). As someone with my own mental health problems I immediately recognised she had quite severe anxiety, and probably depression, along with a slew of other issues and phobias.
Only a few months into her care my husband got a fantastic position with a company perfect for him (thankfully those 8 hard years of university finally paid off), which was so great, for both of us. But not having him around to help me, as he was working 50+ hours meant I was burning out trying to keep on top of things. I am luckily a naturally organised person, so this skill helped but I was in my 20’s and had no idea of the needs required by someone 75+.
I was navigating nursing schedules, government funding and the general life of someone who was so desperately dependant on me in the beginning. I had no outside help from family and had to discover the organisations and facilities set in place to help people in my situation on my own. It was a long, hard slog.
So here I am today, a few years on from this momentous change and my goal is to now pass on all I’ve learnt to everyone and anyone who may need it. No one should have to tramp through as much mud as I had to. I am now a big believer in supporting whoever you can and supporting yourself however you can. There is always help around and even though it may take some time to find it, in the end it’s worth it.
Now my grandmother is fighting her fears, she has 2 great-grandchildren (and another on the way) that she would have never met if she continued down her destructive path; and I would never have figured half the things about myself and my abilities if it wasn’t for her. It’s been a long and arduous journey for both of us, as it is with many people, but we never would have got here without those first steps.
We would love to hear your stories about how you became a carer! Sharing all our stories is the first step to facilitating acknowledgment for the caring way of life.