Urgent call to support carers in crisis

One in six family carers have seriously contemplated killing themselves, according to research conducted by Dr Siobhan O’Dwyer, who says it is time for everyone from researchers and policymakers to aged care providers to do much more.

My research has shown that one in six family carers have seriously contemplated killing themselves – it’s time for all of us, from researchers and policy makers to aged care providers, to do much more, writes Dr Siobhan O’Dwyer.

Dr Siobhan O'Dwyer
Dr Siobhan O’Dwyer

I’d like to start by making a confession: I love the Batman films.

My love affair began in the early 1990s – lying on my bunk bed watching Jack Nicholson as The Joker – faltered briefly during the George Clooney/Val Kilmer era, and reached new heights when Christian Bale donned the mask. As someone who is deeply committed to independent and art house cinema, it’s an unlikely obsession. But something about Batman resonates with my sense of social justice and my desire to fight for those who can’t fight for themselves.

Although I’m a movie buff by night, by day I am a researcher. My research focuses on the wellbeing of family carers and I use my findings to advocate for greater recognition and support for people who are caring for family members with dementia. In particular, I conduct research on, and advocate for, carers who are contemplating suicide or homicide. My research has shown that one in six family carers have seriously contemplated killing themselves and 20 per cent of those are likely to attempt suicide in the future. It has also shown that some carers contemplate killing the person with dementia, out of frustration, fatigue, compassion or self-defence.

Although this research is new – noone has ever asked carers about suicidal or homicidal thoughts before – what it highlights is not. In the academic literature, research on “carer burden” dates back to the 1950s. That’s six decades’ worth of research showing that caring takes a physical and psychological toll, and providing evidence of higher than average rates of physical and mental health problems in carers. Literary and artistic representations of the challenges of caring also abound. Did you know, for example, that Louisa May Alcott was a carer? In her letters, the author of Little Women bemoaned the fact that caring interfered with her writing.

So with all this knowledge, why are carers still struggling? Why are they still sacrificing their physical, mental, and financial health? Why has nothing changed?

Recently, on Twitter, I came across a Venn diagram that I think might hold the answer. The circle on the left was labelled community stability. The circle on the right was labelled Invisible Work. And the overlapping bit in the middle? Batman and family carers!

That’s why nothing has changed. Carers are invisible and the work they do is essential to the sustainability of our society. Without carers, the healthcare system would be overwhelmed. GPs would be booked months in advance, hospitals would be bursting at the seams, and aged care facilities would be struggling to keep up with demand. Without carers, the community care system would also be overwhelmed. People living in their homes would need round-the-clock support for feeding, showering, dressing, and managing money, medications, and household maintenance.

More than 300,000 Australians are currently caring for family members with dementia. Even more are caring for older people with other conditions or disabilities. Of those caring for family members with dementia, one in four spend more than 40 hours per week providing care and the total value of care provided has been estimated at more than $30 billion per year.

Although the Carers Payment and the Carers Allowance provide a small monetary stipend, it’s not enough to live on if you have given up your job to care, and it’s a far cry from the amount required to cover all the costs of caring for a family member with dementia. A recent study from the United States reported that over the last five years of their life, the average out-of-pocket care cost for a person with dementia was US$61,522.

Most carers also have access to respite care, but the 63 days supported by the government don’t go far and many carers tell me that the quality of care often means that ‘respite’ creates more stress than it relieves.

And of course, these are just the challenges facing white, middle class, urban, heterosexual carers. For carers in rural and remote areas, carers with English as a second language, carers with indigenous heritage, carers who are LGBTI, and carers in low-skilled jobs, these difficulties are compounded by the challenges of distance, language, colonisation, stigma and poverty.

Is it any wonder then that carers are invisible?

Busy, disenfranchised, and struggling to make ends meet, they don’t have the time or the energy to demand better.

Many carers also feel guilty asking for help – feeling that they’re betraying the vow of ‘for better or worse’ or failing to live up to the picture of the good daughter or the dutiful son. But just because you love someone, doesn’t mean you don’t deserve support.

Carers Australia and each of its state offices do an amazing job of supporting carers and advocating on their behalf. As do Alzheimer’s Australia and other peak bodies. But more is needed. In Carers Week 2015, Senators Rachel Siewert and Claire Moore moved a motion for the Australian Senate to acknowledge the wonderful work of carers. But this is not enough. From researchers to policy makers to neighbours, everyone can be doing more to support carers.

For those of us doing research, we must resist the pressure to publish more papers saying the same thing. Instead, we should be synthesising the existing evidence, addressing the gaps, and working with advocacy organisations, service providers, and policy makers to help them translate the evidence into meaningful policy and practice.

For those in policy and politics, you must move from acknowledgement to action. As the population ages and rates of dementia rise, a growing number of Australians will be required to take on caring responsibilities. Research also suggests that, by 2029 the demand for family carers will exceed supply by more than 160,000 hours per year. Supporting carers is not a cost, it is an investment in the long-term health and wealth of Australia.

For those in health, community, and residential care, you must work in partnership with family carers, recognising that they are your best ally in understanding the needs of a person with dementia, or other condition, and delivering effective care.

For those in the community, it’s the little things that make a difference. Cook a meal, do a load of washing, offer to take over for an afternoon. A small contribution from you can make a big difference to a carer who is struggling.

In the film The Dark Knight Lt Gordon says of Batman, “He’s the hero Gotham deserves, but not the one it needs right now.” Carers deserve a hero and they need one now. As a community, we can be that hero. So this is me, sending up the bat signal. Will you take up the fight?

If you, or someone you know, is a carer and needs support, help is available from the Suicide Call Back Service (1300 659 467) the Carers Advisory Service (1800 242 636) and the National Dementia Helpline (1800 100 500).

Dr Siobhan O’Dwyer is a senior lecturer at University of Exeter.

Tags: Dr Siobhan O'Dwyer, mental-health,

8 thoughts on “Urgent call to support carers in crisis

  1. As a carer of a son with a significant disability, and a worker in the disability field for over 25 years, I can say that I have seen my share of carers under stress, and those causing stress. There has always been issues around denial, burden, the fairness of life etc, but I have rarely heard carers expressing a desire to end it all. This has usually occurred when a carer is asked what they will do for their person once they are no longer able to care. The response is something like “I will do myself in and take XXX with me”
    Obviously dementia is somewhat different, as the carer is experiencing the grief of loss before the person dies.
    For my part forward planning is essential to relieving some of this stress. People that deny the inevitable outcome or the level of guilt regarding the burden are the ones that seem to descend into crisis the quickest.
    Now that I have made plans for my son’s future, I can enjoy the respite I receive from the funded services, rather than using them as a crutch to get me through with no light at the end of the tunnel

  2. I was suicidal as a carer – it’s why I left caring, in the end. It wasn’t to do with ‘what will I do once I am unable to care?’ – it was about being in my 20s, caring for a partner with significant brain damage, and seeing no future for myself except caring. At the same time, I felt I couldn’t kill myself because of how it would impact my partner.

    So many carers talk about feeling ‘trapped’, and it’s being trapped by feelings of duty and love, and not being able to see a future, as well as physically. Add in loneliness, poverty and guilt, and suicidal feelings do make sense.

  3. I’ve been a Single Carer for twelve years now and have had suicidal thoughts through this period of time. Mainly when I was in the “Black Tunnel” due to no support except for my ageing Mum which was minimal.

    The hardest thing I find currently is being my sons advocate and the amount of time that takes. The researching, etc as well for my son who has ten disabilities takes an insane amount of time.

    What people around me don’t see are all the small things my son needs help with even though he’s twelve. Like changing nappies at night, cutting up his food, making sure he doesn’t choke on his food due to Low Muscle Tone, having to either see or hear him due to his chaotic & destructive ways with our animals & things. The list is endless!!

    Then after he’s asleep, the housework due to Mr Destructo which is an every day occurence. After all that I get to do the outside as well like mowing, gardening, etc.

    Also on top of that the emotional support my son requires. He has toddler meltdowns at 12 but has just hit tweens. So now I deal with both!!!

    Is it any wonder I can’t look after & advocate for myself efficiently. I’m absolutely exhausted!!!

    Of course then I deal with loneliness, due to lack of out time and what comes with that!! Depression!

    Carers need help but who cares????

    Chrissy L

  4. I’m a carer for 2 girls 14/8 it’s a 24 hr job lack of sleep support funding due to agers late dignoses ..I suffer depression myself but I must say my job as a carer keeps me going it does get hard especially when you have to watch what you say and do everyday due to a child disability I fit in with her moods then I know what to say and do…I’m doing the best I can but when they’re 16 they know they can take off which is my fear as she has no fear suicidal at times…if she was able to stay in 1 school and show stability I wouldn’t worry but no..That will be the day I say well you deal with it you take that role from us at that age….when a lot need to be fully watched my status will never end I’ve been a carer for 3 out of 4 kids and still here but I must say I thank god for my strength courage,love hope and most of all patience..

  5. My name is Andrew I have been a full time carer for my mum for 13 years 4 years ago she had a severe stroke and was placed in a nursing home but I have still been caring for her 6 hours a day 7 days a week due to lack of staff I am on a disability pension because she is in a nursing home I no longer get the carers allowance and I no longer have access to support I feel like I have been totally abandoned I am trying to survive on 1 meal a day carers are saving people’s lives we need help

  6. I was left with no other option but to give up my hard-earned and wonderful career to care for my mother who has a serious, often life threatening chronic illness. After 3 years without a day off, I decided to let my guard down and avail myself of 2 hours of respite. I was nervous, but was assured by the so called “care provider” that all would be fine. I left the house. The provider called me after an hour saying that my mother had been rushed to hospital. The provider had given my mother the wrong medication and she was fighting for her life in intensive care. Luckily, she survived. That was 2 years ago. As a result, I haven’t felt able to leave my mother in the hands of anyone else. Other than to take my mother to a doctor’s appointment, I haven’t left the house since Feb 2014. The biggest issue I see is the lack of competent and qualified home carers. To the policy makers of Australia – I’m begging for your help.

  7. I read the above and feel so much better off than these poor carers yet I’m still demoralised enough to even want to research carers and suicide. I have been a carer for about 4 years, for my partner with Alzeihmers- he showed early undetected signs 6 years ago. He is in the late ‘moderate’ stage – early severe stage. Incontinence has set in along with challenging behaviours, lack of empathy, ocd repetitions etc. Continual exhaustion from broken nights sleep creates the main havoc. Continual losses and grief also wears you down.No matter how much help is ‘about to be given’ it is never enough to catch up on the growing number of cumulative deficits. Very few people apart from those who have actually live the experience understand. Many even think the carer is exaggerating or ungrateful for what is already given. Especially if the disabled person looks normal, smiling and happy. The whole of society needs to look at itself and see the truth behind the masks. Disabilities is only one area seriously in trouble. So many in despair, so many contemplating harming themselves and others.It affects everyone in the end.

  8. I feel your pain. 35 years. My father has a head injury.. My mother has a personality disorder and my poor beautiful sister has schizophrenia depression diabetes and arthritis.. My journey is not intense but solo and long term. I feel your pain…

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