Episode 3 - Caring for Carers
Caring for a loved one can be an incredibly rewarding experience, but it can also be emotionally and physically exhausting. Carers often put the needs of their family members before their own, sacrificing their time and energy to provide the necessary care. This selfless act can come with its own set of struggles as carers face physical fatigue and emotional stress while trying to balance a demanding job with providing care. We must recognize the hard work and dedication of these individuals who dedicate themselves to caring for loved ones in need.
Welcome to DACS, your Disability, and Aged Care Service podcast, brought to you by LevHealth where we make person-centred care in a safe, caring environment easily accessible.
So let's talk about carers, but before I go there, I need to tell you why. By now, you know I grew up in a big big big family. Growing up we were taught cousins are just brothers and sisters born to aunts and uncles. We knew everyone in the village, and people were always in and out of each other's houses. I have childhood friends, girlhood friends, school friends, nursing friends, and work friends. Church friends and kids friends, parent friends.
In short no shortage of people in my life. When I first left home and went to mainland of India, I was surrounded by a few 100s of people all the time, I did a hospital-based nursing course and lived in a hostel with a few 100 girls. There was no escape. But I was lonely, so very lonely. Strangers surrounded me. They were not my people. Faces were different, voices were different, and culture was different. Life was different. Even my sister being there with me was no consolation for me.
5 yrs on I wept bitterly, leaving this hospital and hostel. Strangers had become friends; some even took us to their homes, and the families welcomed us with warmth, love, and food. I love food. Then I came to Australia, and the whole process started again. But this time, the difference was stark. This time there were not many people. There was no community. People were not in each other’s lives as I knew, and I felt so alone.
19 yrs, now Australia is home, and family and friends surround me. But you see, in hard, trying times, I miss my parents and aunts and uncles. Who have been my caretakers and well-wishers who made personal sacrifices and always said a word of prayer? At any given time, a round table conference is going on in my head. In any given scenario, I know exactly what someone will say and the motivation behind it.
But I have learned just because one has families does not mean they have a bond. People can be rich in money and poor in love. Love, a social or moral obligation, is no longer enough for people to stay and care for. Negative as it may sound, I have seen much of it.
Why is this important? In a big family, there was always someone at hand to take turns. People help when they are around, now look at me so far away from my parents. Lucky for me, my brother and sister-in-law are amazing and care for my parents. And vice versa, my parents greatly help and support them. My aunts and uncles check-in, share a meal and lend a listening ear.
With people having smaller families, families living far from each other, and all adults working, people are away. At the same time, the personal space bubble has grown so big that we have forgotten to ask for help for ourselves or our loved ones. We have asked and were let down. Many have forgotten to ask others, “how can I help” or “what can I do for you”. Many have asked and suffered for their kindness—so many scenarios. A quote from Writer Gary Paulsen’s book comes to mind, “ you can take the man out of the woods, but you can't take the woods out of the man”. It's true for humans too, but instead of woods, we need to care.
I have noticed that it does not matter if we live in our bubbles. In 95% ( my assumption course), care is needed. You care. I know that is why you are here listening to this podcast. Village life, living in a herd, is not new to humans. We have done that from the beginning of our existence. And we will continue doing that, what families did, now paid workers to do.
In an ideal world, life is about codependency. We physically care more for our young ones and teach them how to care for themselves and others. So one day, they can grow up and step in our shoes. We care for our elderly because they are completing their circle of life. We do this out of love and in looking after our elderly, we prepare our young for their future roles. We care for loved ones when they are sick. These are all basic human instincts though vital. They are not the same as caring for someone who can not care for themselves. In the circle of life, there is a phase in our lives that gives us time and opportunity, frees us from intense responsibility, allows us to go after our dreams, and in many cases, lets us live as we want.
My husband and I have worked hard to make our children self-sufficient. So if I have to be at work or do not want to wake up early, kids can make breakfast, make lunch and take themselves off to school. My in-laws are self-caring. My mother-in-law is quite capable of looking after herself and my father-in-law and our great uncle. We offer support when we think we are needed, and she asks for help or accepts our offer when she is ready to do so.
Having a loved one with a disability changes things. Having a disability, oneself, changes things. And caring takes over a whole new dimension. Now we are relying on others. We want to care for our loved ones. With that need to care, there are also frustrations due to our own physical limitations. Some question their self-worth others live in guilt. The type of disability and the intensity of the disability means for some carers. There is no breathing space.
The role of primary care is exhausting. This is why we need to care not only for our people with disability but their carers because these carers get no break in the circle of life. They can not just up and go on holiday. They can not always be spontaneous. They can't sleep in if they want to. They have no downtime to rest and recuperate. They have no freedom to go after their dreams—the fear of the future crushes some.
As per Australian Institute for health and welfare, direct quote “ Informal carers are people who provide care to those who need it within the context of an existing relationship, such as a family member, a friend or a neighbour. The role's demands often go beyond what would normally be expected of these relationships.” As per the Australian Bureau of Statistics (ABS) Survey (2018), 1 in 10 Australians provided informal care. And one-third of these carers were between 35 to 54 yrs old. Primary carers are people who provide the most amount of care. One in 3 of the above statistic is a primary carer; females make up the majority.
One day I was praising a young lad to his mum about how good he was at this particular thing. After all my gushing, she dejectedly told me, Aruna, you are right, and we are very proud of him, but you know he will never be able to care for himself as other children will. He will never fit the same, he will never be able able to live that ordinary life that we take for granted. I totally understood her.
Being a parent has changed us for the better and made us more vulnerable and fearful. Also, nursing has exposed me to many heartbreaks. I do health assessments and write a care plan. We can see the toll caring has taken on families and relationships and the decline of carers' health, income, and happiness. The worry they carry - of what happens when I am gone. The responsibility and alienation other children in the family feel. It is not all bad; I have heard laughter and happy stories that have moved me to tears too. Of course, you hear horror stories too.
This is why it is crucial to understand the vulnerability of people with a disability and advocate for them. Caring for a loved one with a disability is a heroic act of selflessness and courage. Carers are the backbone of support, providing essential physical care as well as emotional guidance to those who need it. Without carers, many would be unable to live their lives in the same way they do now. Being a carer can be an isolating experience, as it can be challenging to find the right balance between caring for a loved one and taking care of yourself.
You, the mum, the dad, the sibling, the elderly parents, the children, and young adults who find themselves caring for a loved one - salute.
And for the rest of us, The gist of the matter is if you are a professional carer and walk into your work for the sake of working, stop and think again. Your sensitivity and care can make a world of difference to the life of the person you care for and those of their loved ones. If you are a carer, remember to look after yourself. If you are a primary informal carer, let me know in the comments what you do for self-care or if you would like me to talk about self-care. Also, please remember the majority of us care. We need clear communication and space to do so. I will discuss building a more therapeutic relationship with your professional carer and getting the most out of the relationship. We will also explore some of the resources available for carers. Until next time take care.