‘I stopped caring for my mother, but the guilt never left me’

“You need to come in and see someone. Now.”

These words were spoken to me six years ago. I had been my mother’s carer for barely five months. My near-hysterical phone call to the Altzheimer’s Association Helpline, followed by a two-hour counselling session the next day, made it clear I had neither the nous nor the disposition for taking on the role of full-time carer for my mother.

Some months before this, my intractably traditional Italian father had asked me, the only female of his four children, for help. My mother’s confounding combination of depression, anxiety and early stage dementia was making her behaviour increasingly unmanageable and so, out of a sense of duty (and to placate this man who was adamant his wife of 70 years should die in his arms at home), I gave up my job (that I loved) and moved cities to help.

After this dismal five-month stint, my contribution to her care amounted to two days per week for the next four-and-a-half years. It was a blessing when she died earlier this year.

I’ve now had the had time to catch my breath and look to the future and I find myself feeling confused and a little depressed. It’s as if I’m standing at the edge of a chasm that I’m not sure how to broach, gazing longingly at my happier ‘old life’ on the other side.

Surely I’m not the only Baby Boomer ex-carer (of the 2.8 million carers in Australia of whom two-thirds are female, average age 55, median income $520 a week), who now finds herself economically and emotionally depleted, staring from the sidelines at her cashed-up contemporaries who appear to be caught up in the hilarious busyness of retirement.

According to Carers Australia CEO, Ara Cresswell, the social, emotional and economic issues confronting carers when their loved one dies have for so long been neglected, that a large portion of the organisation’s national carer’s conference last year was given over to the topic.

Bereaved long-time carers seeking employment “face special challenges in the job market”, Cresswell says, when they find their qualifications, work experience and referees are long out of date. She cites the case of one of the Carers Australia office cleaners who, 12 years earlier, had given up her job as a scientist with the CSIRO to care for her husband who had developed motor neurone disease.

When she had tried to re-enter the workforce after his death, she found herself so far behind in her profession that she had to abandon any hope of finding work as a scientist. “She came to us as our office cleaner,” Cresswell says.

Depleted economic circumstances and poor job prospects, along with the emotional distress of losing a family member, can be a toxic mix for carers, Cresswell says. In addition, many primary carers can also find themselves socially isolated as a result of their caring role. “For some, caring prevents them from engaging in activities out the home, so they also report a loss of self-identity because their caring role so dominated their lives.”

Indeed, I was surprised at how much my own sense of identity and, dare I say, ego, was tied up with being my mother’s carer. Now that she has died, instead of relishing my new-found freedom, I find myself searching frantically for a new ‘purpose’ — a new identity.

My mother was affected by vascular dementia, one of the many degenerative brain disorders that affect the aged, and which present the most difficult challenges for carers. Her behaviour became so problematic at one point, she spent several weeks in a psychogeriatric ward. I will forever be plagued by regret for not having more patience and compassion for my mother.

Why some carers cope better than others after their loved one dies is of interest to University of Pittsburgh’s professor of psychiatry, Richard Schulz, who led a 2008 study, Life after Bereavement, on the subject. He found that 10 to 15 per cent of carers would experience chronic depression after the death of the person they cared for. Interestingly, this percentage doubled for carers of people affected by dementia. The reason for this, according to Shultz, is because, the more stressful the care-giving experience, the more challenging the recovery after bereavement.

Essentially, his findings and that of several related studies show the levels of mental distress experienced during care-giving (such as anxiety and depression) are predictive of how well that person recovers after the death of their loved one.

“Carers who are older, sicker, spouses [as opposed to adult children]; individuals with a stronger attachment to the deceased person, and carers who had a more stressful care-giving experience — that is, they had higher rates of depression prior to death of loved one – are more likely to have poorer outcomes,” Schultz says.

He says “younger, healthy, less attached individuals with a good support network” were more likely to adapt well afterwards.

The Australian Bureau of Statistics Survey of Disability and Ageing Carers 2015 found 27 per cent of Australian primary carers feel frequently worried or depressed due to their caring role, with 10 per cent diagnosed with a stress-related illness.

Although I wasn’t officially diagnosed with a stress-related illness during the time as my mother’s carer, I had more than my fair share of psychological therapy to deal with the ongoing battle in my head fuelled by the opposing forces of resentment and shame. Luckily, I’ve had good psychological and personal support since her death, and am finding my way back into meaningful employment and making inroads into re-establishing old social connections.

Yet, for a while, I struggled. Really struggled. For many, the struggle continues for years.

Carers who find themselves in this desolate no-man’s land of life after caring can access a range of support services including counselling, peer support, and referral to a range of community services. A great starting point is the Carers Australia Helpline — 1800 242 636 — the same one I called.

Are you caring for a loved one? How do you feel?

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