Caring ‘Til It Hurts

This piece, written by me, was originally published in the Australian Journal of Dementia Care (Volume 3, Issue 6, December 2014/January 2015, p33-34) under the title Caring ‘Til It Hurts: Suicide Risk in Family Carers. It was designed to introduce aged care staff, health professionals, and service providers to the issue of suicide risk in family carers and is reproduced here with permission. For ease of reading I have removed the references, but I am happy to provide them on request. 

 

The first thing I noticed about Ken* was his arms. Thick and tanned, they were the kind of arms that could carry you out of a burning building without breaking a sweat. Arms made strong by years of physical labour, first on the farm and then on the battlefield. Arms that now spent their days lifting. Lifting her in and out of the car, on and off the toilet, in and out of the bed they no longer shared. Always lifting.

As Ken and I spoke, I watched the arms. At first they were crossed firmly over his chest – the body trying to stop the man from giving away too many secrets. After a while the shoulders dropped and the arms uncrossed, but the hands remained firmly clasped – the body only prepared to meet the man halfway. But after two hours, the arms gave up. The man cried, the body shook, and the secrets were revealed.

****

More than 200,000 Australians currently identify themselves as the primary carer for a family member with dementia and one in four of them provide in excess of 40 hours care per week. As a result of the cognitive impairment and behavioural problems, caring for a person with dementia is acknowledged to be more demanding than caring for someone with a physical disability and this intense work can lead to physical and mental health problems. Rates of anxiety, depression, and hopelessness are all higher than average in family carers and pain, fatigue, and chronic health conditions are also common.

Although depression, anxiety, hopelessness, pain, and chronic disease all have been linked to suicide in the general population, until recently there had been no research on suicidal ideation or suicide risk in family carers.

This article provides an overview of research my team and I have recently conducted on suicide risk in family carers and provides practical suggestions to help staff in clinical and community practice identify and support carers at risk.

Why suicide? Why now?
Although academic research on the physical and emotional experiences of carers only dates back to the 1950s, Harriet Beecher Stowe and Louisa May Alcott were writing about the tribulations of caring in the 1800s and archeologists have found the remains of Neolithic adults who could not have survived childhood without dedicated family care. Caring is clearly not a new phenomenon and my colleagues and I were intrigued that suicide had not been the focus of more research.

In our careful searches of the academic literature we were able to find only one previous study of suicidal ideation in family carers of any sort (not just dementia). In 1997, Cynthia Rosengard and Susan Folkman reported that more than 50 per cent of gay men caring for a spouse with AIDS had contemplated suicide. Interestingly, experiences of suicidal ideation were unrelated to the carer’s own HIV status. The only other evidence we could find came from studies of homicide-suicides committed by older adults. Although homicide-suicides are rare, in those studies up to 50 per cent of homicide-suicides were committed by spousal carers, with approximately 20 per cent of those caring for a spouse with dementia.

What did we do? And what did we find?
We started our research by interviewing a small group of just nine carers (four men, five women). We wanted to get a sense of how many carers had contemplated suicide and the factors that might be associated with suicidal ideation, before we embarked on a larger project.

Four of the nine participants had contemplated suicide while caring for a person with dementia and Ken (referred to at the beginning of this article) was one of those four. For the other carers, suicide was a way to escape the relentless demands and overwhelming fatigue of caring (or, as one participant described it, “to get off the merry-go-round”). For Ken, it was about ensuring that his wife would always be well cared for. He said: “A couple of times there I thought about how I could get away with bumping myself off…because my insurance and all my stuff would’ve set my wife up forever.” Although none of the nine carers had attempted suicide, two had made preparations.

Our next study included 120 family carers who completed an anonymous survey about their health and well-being. When we analysed the data we found that one in four had contemplated suicide more than once in the previous 12 months. Of those who had contemplated suicide, only half had ever told someone and one-third said they were likely to attempt suicide in the future. When we compared those rates to population averages, we found that family carers were contemplating suicide at more than eight times the rate of the general population.

Which carers are at risk?
In our first study, there were three factors that appeared to put carers at risk of suicide: mental health problems prior to becoming a carer; physical health problems while caring; and intense conflict with family or professional care staff.

For the carers with pre-existing mental health problems, the long hours, demanding physical labour, and isolation of caring exacerbated their symptoms and made it difficult for them to cope with the challenges of caring or to seek help.

For those with physical health problems, suicidal thoughts cropped up when the condition was aggravated by the caring role, there was ongoing pain, and time for self-care was limited. For the carers with physical health problems, an inability to seek help (due to exhaustion) went hand-in-hand with an unwillingness to seek help for fear of being seen as incompetent. Finally, for those carers who faced intense interpersonal conflict, it was the resulting isolation, helplessness, and vulnerability that led to thoughts of suicide.

In our larger study, carers who had contemplated suicide reported more behavioural and psychological symptoms in the person with dementia and, for their part, stronger negative reactions to these symptoms. They were also less confident in their ability to access support services, less optimistic, and less satisfied with the social support they received. They had higher levels of burden, hopelessness, anxiety, and depression, and made greater use of dysfunctional coping strategies (like alcohol or drug use). When we put all these factors into a statistical model, depression was the only significant predictor of suicidal ideation.

What about resilience?
Our research revealed that one in four carers had contemplated suicide and this is certainly a finding that warrants serious concern. On the flipside though, three out of four carers had not contemplated suicide and by studying these carers we can identify the factors that promote resilience and develop targeted interventions to support carers at risk.

In our first study, the factors that fostered resilience were: the use of practical coping strategies; personal characteristics like determination and flexibility; social support; and faith.

Coping strategies such as seeking out information and support, maintaining hobbies, connecting with other carers, and using respite services all allowed carers to recharge their batteries and ameliorated the impact of caring on their physical and mental health.

Carers who could draw on internal reserves of compassion, determination, and flexibility were more able to accept the challenges of caring and responded more proactively to specific stressors.

Social support from family and service providers gave carers time to engage in self-care and the most resilient carers were those who could communicate assertively about the sort of support they needed.

Finally, faith provided carers with a framework for reflecting on their experiences, seeing the ‘bigger picture’, and recognising that the caring role had a purpose, was finite, and would eventually pass.

In our second study, the low rates of optimism, self-efficacy, and satisfaction among carers who had contemplated suicide suggest that these factors may also play a role in resilience.

What can you do?
Although our research is continuing, we now know that carers are indeed at risk of suicide and, as a community, we need to work to address this issue. Clinicians, allied health professionals, care workers, and service providers are ideally placed to identify and support carers at risk, but many are, understandably, apprehensive.

To ensure that clinical, community, and residential care staff can provide the best possible support, they need to know how to ask about suicide and where to refer carers at risk.

  • Living Works offers Applied Suicide Intervention and Skills Training (ASIST) courses all around the country and these two-day courses provide an excellent introduction to suicide and suicide prevention, including role-playing the difficult conversations. More information is available at: livingworks.com.au/Training-Programs.html
  • Carers in crisis should be referred to Lifeline or the Suicide Call Back Service. Lifeline (13 11 14) is a telephone support service that provides 24-hour, confidential, crisis counselling. The Suicide Call Back Service (1300 659 467) also provides 24-hour telephone counselling and offers six free follow-up sessions with the same counsellor, at any time that suits the caller.
  • Carers experiencing mental health problems should also be encouraged to talk to their GP, who may be able to provide a referral for subsidised sessions with a psychologist or psychiatrist.
  • Finally, health professionals, care workers, and service providers can also help to prevent carers ever reaching crisis point. As Ken’s case illustrates, a cup of tea and a listening ear can go a long way to making a carer feel valued and supported. Providing quality respite care, helping carers connect with services, and fostering a community of carers can also help to ease the load.

****

As Ken showed me to the door, I looked again at the arms. They were swinging gently by his sides, unburdened now of the story they had carried for so long.

*Not his real name.

4 thoughts on “Caring ‘Til It Hurts

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  2. I am so glad to see research being done on this. I am the sole care-giver to my mom who is 92 and has Alzheimer’s/Vascular dementia. I have been hospitalized twice in those ten years for suicidal thoughts, both times I asked for help (admitted myself). Unfortunately by doing so, my then 14 year old daughter (2011) and 16 year old (2013) respectively was left to care for mom. In both instances I had left instructions for mom to be placed in the VA care home, and because she refused (me having POA, and not able to verbally place her I guess?) she was left ‘home alone’ by the police (I had called 911). This was AFTER they agreed not to. My daughter spent her “Spring break” caring for mom. (both times)

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    • Thanks for taking the time to comment, Lisa. It sounds like you’ve had a tough journey, but it’s so great that you were able to ask for help when you needed it. And it sounds like you have great kids – not many teenagers would be able to step up like that. I hope you’re all doing okay and getting the support you need. Take care.

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