From October 11 to 17 2020, National Carers Week is a time to recognise the 2.65 million Australians who provide care and support to a family member or friend with disability, mental health condition, chronic condition, terminal illness, affected by substance abuse, or who are frail aged. Anyone at any time, can become a carer.
Carers are vital to the wellbeing of those living with disability and make a substantial contribution to the social and economic wellbeing of the community, providing around 70 percent of care to people with disabilities (AIHW, 2019).
As an NDIS provider, we have the privilege of working alongside incredible carers who go above and beyond to ensure the right support is being provided to the individual they care for.
At Therapy Care we pride ourselves on working collaboratively to achieve holistic support, and recognise this wouldn’t be possible without a relationship and the support of each participant’s carer.
We recognise and deeply value the commitment these carers continuously pour into supporting their loved ones. So without further ado, it’s time to shine a light on three carers in our community in hopes to strengthen our understanding of what it truly means to be a carer.
Angela Wilson, carer to her son, Luke Wilson
What disability is Luke living with, and what does being his primary carer look like each day?
Luke has Down syndrome. Each day, we make sure Luke is safe and happy. We support Luke’s independence by prompting him to stay on top of his daily schedule and make sure he gets to his appointments and places on time.
What were some of the initial obstacles you needed to overcome to integrate Luke’s supports into your life?
Continuing to manage all of Luke’s supports and therapy sessions will always be a small obstacle to overcome. Every single day is busy!
What are the most challenging aspects of being a carer?
It can be challenging as a carer as often we forget about our own health and fail to prioritise our emotional and mental wellbeing. It can be challenging to make time for personal activities and relationships.
Is it important for Luke’s wellbeing, that you work collaboratively with his NDIS providers?
Definitely!
What does this collaborative approach look like?
Checking in regularly, touching base and making sure all of Luke’s needs are met.
What would you like people to know about the role of a carer?
Being a carer can have its challenges, but it is extremely rewarding. At the end of the day, you are a parent. You have to consider relationships, seeing eye to eye with everyone in the family for Luke’s supports, and remember to take care of the entire family.
Kelly Parkes, carer to her daughter, Karlee Parkes
What disability is Karlee living with, and what does being his primary carer look like each day?
Karlee has Down syndrome. Sometimes, the days can be stressful, and on other days joyful. I wouldn’t change it for the world, because there is never a day where Karlee doesn’t make me smile.
What were some of the initial obstacles you needed to overcome to integrate Karlee’s supports into your life?
It can be hard to find time to juggle work, my personal life and relationships. It can also be hard to factor in time for Karlee’s other siblings. It can be challenging at times to find activities for everyone to do together due to different interests and capabilities.
What are the most challenging aspects of being a carer?
It can be challenging to take care of yourself, your mental health. I am not able to do anything without Karlee, she requires supervision 24/7. It can also be challenging to manage behaviours and personal relationships.
Is it important for Karlee’s wellbeing, that you work collaboratively with his NDIS providers?
Yes, definitely!
What does this collaborative approach look like?
Communication with all of Karlee’s supports regularly. It is important to work collaboratively to understand Karlee’s needs, goals and her programs. Working with her support providers helps me understand her plan. I get regular updates from Therapy Care on how Karlee is going throughout her sessions and day program with pictures, and it’s great to see how happy she is.
What would you like people to know about the role of a carer?
People don’t understand what it is like to be a carer, to the extent of all we have to do. I have had other parents tell me that “Karlee is so easy, I wish my kids were like her” – even parents of children without disability. It can be a very demanding role, which people can often misunderstand. There can be challenging behaviours, even on a good day. But each day, Karlee is completely dependent on me and her support providers and requires 24/7 supervision.
Mark Lister, carer to his stepson, Zac Brenton
What disability is Zac living with, and what does being his primary carer look like each day?
Zac is living with autism, each day Zac requires prompting for all activities of daily living.
What were some of the initial obstacles you needed to overcome to integrate Zac’s supports into your life?
It can be hard to juggle our work schedules with all of Zac’s therapies and supports. My work hours revolve around Zac’s activity schedule and when I need to pick him up and drop him off. It would be impossible to make work without the help of his grandparents.
What are the most challenging aspects of being a carer?
The most challenging aspect is time. There is just never enough time to fit everything into the day when you are caring for someone else.
Is it important for Zac’s wellbeing, that you work collaboratively with his NDIS providers?
Yes, absolutely. Communication is key.
What does this collaborative approach look like?
Communication regularly with all of Zac’s team of supports, and communication amongst them.
What would you like people to know about the role of a carer?
Sometimes, people can forget that the role of a carer is 24/7. It never stops. You have your regular job, then you have your job as a carer as soon as you get home; care, phone calls, therapy sessions, getting documentation. It doesn’t stop. Even when we’re at a social or recreational outing, Zac still needs to be supervised 24/7.
Thank you Angela, Kelly and Mark for providing such candid insights into the life of a carer. The role you play in Luke, Karlee and Zac’s lives are invaluable. We usually talk about how people living with disability are real life superheroes, and this week we extend that to include their carers.
It’s comes at no shock that carers typically face heavy demands and are at risk of experiencing stressors such as poor or reduced physical and/or mental health, financial stress, limited education and career opportunities, social isolation and housing stress.
While we recognise the hardships many carers face, there’s also many positive aspects of being a carer. We often witness a special kind of bond between the caregiver and receiver, it gives a strong sense of purpose and personal achievement, leads to a specialised set of skills and opens the door to a community the carer otherwise may not have had the privilege of being a part of.
If you’re a carer and are looking for further support, get in touch with us at info@therapycare.com.au If you’re looking for further information and helpful resources, head to http://www.carersnsw.org.au/
