An interview with two carers for National Carers Week

Published 20 October 2023

This National Carers Week we spoke to two carers to hear some of their personal experiences and challenges. 

Alyssa: a young carer’s story

My name is Alyssa. I’ve been caring for my mum for more than 10 years. She has Huntington’s Disease, a rare condition sort of like Parkinson’s disease, Alzheimers, and schizophrenia combined.  It’s a degenerative condition, which means it gets worse as time goes by. There isn’t a cure, and there are no medications specifically for it. 

Mum started getting sick when I was 16 years old, although at the time I didn’t really realise it. I started caring sort of incidentally. At first, I attended occasional appointments with mum to help her keep track of things, then I attended all the appointments because it was easier. Then I was making the appointments, tracking medications, and searching for supports. Since Huntington’s is rare, most GPs have little or no knowledge of it. I was the expert in the room. 

Selfie of two women looking at camera smiling
Alyssa (left) with her mum

This weird space continued for a couple of years, and I didn’t really think of myself as a carer. I was being a good daughter, you know? 

Then mum had two episodes of psychosis. The first ended with her driving my car into a pole deliberately because she thought she was invincible. The second ended when she ran away into nearby bushland and was missing for several days. 

I was thrown into a whole new world of caring. Mum relied on me a lot, but I also had to report to doctors how she was doing, if medications worked and so on. It was very hard. Caring for mum isn’t easy, and is definitely not pretty all the time, but I can’t imagine doing anything differently. 

What is a typical day like for you?

Having a routine is super important. Mum is calmer with it, and it saves my sanity! Wake up is always the same time, then breakfast and medications. Mum takes medications three to four times a day, and I have to make sure she takes everything. I have a notebook and an app I use to keep track of it all. 

In the morning, we will do something like garden, clean the house, or run errands. When mum has good days, I run the errands. On bad days, we stay home as much as possible. It’s hard to be out in public when mum is paranoid, anxious, yelling at seemingly nothing, or running off on a whim. I’ve had the police called for a welfare check by members of the community several times. So, I try to avoid that if possible! 

Then we have lunch, and mum has a nap. I catch up on emails or NDIS stuff then. When she wakes up, we may watch some TV or prep dinner. She can’t really help me, but I like to pretend she can. So, I give her little jobs to do and then redo them myself later. 

My life caring is very different from friends or family. As my mum’s carer, my whole life revolves around keeping her calm and happy. I can’t go on holidays or pop out to dinner on a whim. Keeping my own commitments is next to impossible. 

I often joke to friends that caring for mum is like looking after a young child, but one who has access to a bank account and that can make decisions for themselves, even to their detriment. 

Have you ever felt discriminated against because of your role as a carer?

Definitely. Being a carer is often a misunderstood role, and that’s especially true as a young carer. 

I’ve been told by my family that I’m controlling and taking advantage of mum because of the routine we have and the fact I’ve managed her money and bills since her psychotic episodes. 

I’ve had people tell me I’m making things sound worse than they are. Often mum can hold things together for short periods of time when she is with other people. So, they don’t understand what she is like normally. 

I’ve had doctors and legal professionals ask why I’m in the room, and when is the ‘adult’ arriving. I’ve had them dismiss my opinion and concerns because I don’t have a medical degree, even though I know my mum best.

A parent-carer’s story

Carrie* is in her early sixties and cares for her 25-year-old son who lives with paranoid schizophrenia. He is under a community treatment order and has experienced periods of delusion and suicidal impulses. These have resulted in a cycle of involuntary admissions to mental health institutions, sometimes through the police system and sometimes the health system.

Carrie supports her son financially, emotionally and “in every other way I can”, even when he is in hospital or living away from her in temporary housing. While Carrie loves her son unconditionally and appreciates that everything they have been through has given them a closer relationship than some parents have with their child, she says “caring takes a huge toll on your own physical and mental health.”

Older woman looking off into distance smiling holding someones hand
Stock photo by Ainara Oto on Unsplash

Carrie has been unable to find employment and doesn’t qualify for a carer allowance but is effectively on call 24/7 and has been “sleep deprived for years”. 

Carrie never thought of herself as a carer at all until she joined advocacy groups, only as a mother. But her story highlights the extra complexities that a parent-carer may experience, in addition to the challenges and stresses generally involved in being a carer. 

“There is the emotional strain and complex feelings of guilt and responsibility, and the grief if your child is suffering, unhappy, unable to have their needs met or to achieve things they hoped to.” 

“I have to stay calm and together for him, even when I’m falling apart”.

Being a carer can be isolating. Living in a small community, Carrie feels particularly alone at times. When other parents talk about what their children are doing, she feels she can’t talk honestly about her son, who grew up among them.

She recently tried to join a support group for older carers, but the minimum age is 65. 

While she welcomes the recognition that young carers have been getting in recent years, Carrie says that ageing carers also face specific issues. 

“What will happen to the person who depends on me, when I’m no longer able to do things for them?”

Carrie has experienced a range of good and bad in her interactions with medical professionals and others, including first responders, over the years. She says there are huge inconsistencies in how carers are treated and communicated with at every step, and how much involvement they are expected or allowed to have. 

Carrie has been accused of being in denial when she asked questions about a diagnosis and told to “back off and stop trying to save him”. There is a high turnover of case workers and each one brings their own assumptions and attitudes, Carrie says.

Carrie has been actively involved in various carer and mental health consumer advocacy groups. She believes it’s vital that they have carers working for them, so that carers have an effective voice. 

“Despite the issue being well-recognised in the literature and policy, in practice we desperately need more support for the mental health of carers. Research needs to be put into practice”, says Carrie. 

 

*Name has been changed to protect the privacy of the individuals.

Last updated:

20 Oct 2023

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