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A mother’s love and positivity an inspiration

I am a carer for my mother, and I also have guardianship of my niece, who is 16. My mum who is 81 was an intensely independent person all her life. She never asked for help from others and would rarely accept even if it were offered. In 2013 she suffered an acute right pontine haemorrhage. At the hospital I was told mum would not survive the bleed but she pulled through. Mum was then discharged into my care.

This is not my first time caring. When I was 20 my father had a massive stroke and ended up spending months in rehab. My mother and I spent seven years looking after him, and making sure he was provided for.

The second time around, in a caring role, I am older and wiser and a great deal stronger than I was so I am able to push harder for assistance. Most people are surprised that I am a carer given my positive outlook and the fact that I don’t treat it as a negative. I can attribute my positive attitude, to my mother, she has always been the most positive and giving person I have ever met. She was the one who taught me not to judge and that everyone has a story.

My biggest challenge at the start of my caring role, was accepting help. For some reason, I thought I could do it all which included taking on raising a teenager. I have learnt that accepting help is not a weakness and that I am not Superwoman. It took me some time but I have realised that my physical and mental health is as much a priority as mum’s. I make sure I do something for myself every week and I have always had a love of art, I paint and draw in a variety of mediums.

Another challenge is balancing work and my caring responsibilities. I have used up nearly all my different types of leave in my role as a carer. I have reduced my work hours to part time to allow me to care for mum and receive a small pension to assist.

Carers are the backbone of the community and caring can be tough. We are the silent few who do our best to make sure that those we care about are well looked after often at our own expense. We are doing our best. Your compassion means the world to us.

Make time for you. Stay calm. You will do fine.

I have been a carer for most of my life. I’m only a young adult, but my role as a carer for my mum has shaped my days for as long as I can remember.

It would stun most people to know that there are an estimated two to three young carers in every classroom (ABS (2012) Survey of Disability, Ageing and Carers). These children, teens and young adults are cooks, cleaners, nurses, entertainers, secretaries, personal shoppers and a sounding board for their disabled or ill loved ones to rely on.

They somehow juggle school and home life, and often sacrifice the personal aspirations and daily freedoms that others their age take for granted.

But for all that, in my experience, they often have a positive disposition; they manage their multiple responsibilities with determination, in the knowledge that – even if the rest of the world doesn’t necessarily see it – what they do is vital to their loved one.

This year, I have taken on the role of Young Carer Ambassador for Carers SA, I am also the South Australian representative for the Australian National Young Carer Action Team run by Carers Australia. I am very grateful to be a representative of young carers, to share my experiences and raise awareness about the issues young carers face.

My father was unwell with multiple disabilities before he passed away, my brother has autism and my mother has complex health issues that require constant care. It’s hard work, but love and lack of options means that this is my full-time job for now.

Like any young carer, I have had my challenges and dark times – but the thing that distinguishes a lot of young carers is their resilience.

Of course, in an ideal world, we wouldn’t need to take on such heavy burdens, sometimes alone, which is why advocacy organisations like Carers SA and awareness-raising activities like National Carers Week (October 12-18) are so important.

Carers are often the silent engines that keep their families intact and running and events such as Carers Week help remind the rest of the community of both their presence and their contribution to society. The work of carers is often unseen in public, but the role they play is truly selfless and remarkable.

On average, they provide about 40 hours of unpaid care each week – often while also studying or holding down a job and running the household. In economic terms, the contribution they make is huge, valued at $40.9 billion a year nationally (Access Economics (2010) The Economic Value of Informal Care in 2010).

A lot of people don’t understand what it means to be a carer; I’ve had teachers who thought I was a “wagger” because I had to miss days of school, not comprehending – or believing – that I needed to be home to care for my mum.

I never completed high school, due to mum’s bad health and because I couldn’t get the help and support services I required to balance my caring role, and my education.

But I’m optimistic for the future. I still hope to finish TAFE one day and begin a career in tourism. To do that, I know I will need more support than I can find today – all carers do.

That’s why it is important that governments think carefully about how their policies will affect carers; they must ensure they ease the financial burden and alleviate the shortage of support, and not unwittingly exacerbate it in any way.

It is also why it is important that we occasionally stop to say “thankyou” to carers, and show them that even though they may feel invisible, their contribution is truly appreciated.

* Tegan Heggblum is Carers SA Young Carer Ambassador.

I am a carer and just so very passionate about carers, Dementia and dignity in care. I have been in a caring roll about 13 years. Around 13 years ago I noticed some very subtle changes in my husband’s behaviour. I tried to tell myself that I was imagining this; he was an upright, fit active man who loved caravanning, camping, bushwalking, gardening and swimming. I thought there just could not be anything wrong, however the “niggle” feeling continued.

It was very frustrating trying to obtain a diagnosis for my husband in the early stages. It took many visits to our local GP, who felt the problems were “normal ageing” and was not really listening to what he was being told. Eventually I visited the doctor on my own and told him very firmly that I would be back the next day, with my husband, and would not be leaving without a referral to a specialist. I feel early diagnosing for Dementia is essential. Our Neurologist was wonderful, tests followed, then a diagnosis of Alzheimer’s and we were referred to Alzheimer’s SA and our journey began.

In the beginning, there was a course we were able to attend together at Alzheimer’s which was wonderful and certainly opened our eyes to what we could expect in the future. It helped us feel not so alone, and we became very active in Memory Lane Café and Give it a Go. These were the most wonderful programs and the social aspect for us both was so rewarding.

I was able to get respite at Myrtle Cottage for Basil to enable me to continue with the Carer support group which was held monthly at Alzheimers SA. I and other carers often say we would never have managed without this information and support by the wonderful people who counselled us. We laughed, we cried, we talked and realised, we were all in this together.

Carers SA became our next focal point for information and support. I joined the Western Carers Group and enjoyed the monthly meetings, occasional trips, outings to the pictures and lunches. My friendship network grew, we all had something in common, not just Dementia, but caring for a loved one with problems. I became a member of the Carer Advisory Group (CAG) and was Chairperson during 2014. It was wonderful to meet country carers and spend time with them at the CAG annual retreat.

I believe as a carer of a person with Dementia, I need to learn as much about the debilitating disease as I can, not only for Basil and myself but for all Dementia carers. I have attended day workshops, forums, lectures and love being part of consumer groups to share information and to work towards a better understanding of Dementia in our community.

Dignity in care has become another big part of my life. I believe we have good training available for aged care but it is a continuing battle to convince Residential Care Management that Dementia care is so very different to aged care. My husband is now unfortunately in Residential Care and I am finding that as his wife and carer, it is extremely challenging.

Carers all need something “just for their relaxation” and mine is quilting. I am able to just “lose” myself in this activity and recharge my batteries. I run a quilting group in our local church hall, this is my “therapy time”. The journey continues, and the learning continues.