Carers, people who provide unpaid support to family members and friends with health impairments – be that illness, frailty, disability or otherwise – are common among us. Reports from the Carers Trust estimate the number of unpaid carers could be as high as 10.6 million in the United Kingdom. Approximately three in five people will be unpaid carers at some point in their lives, with a significant number who say caring has a negative impact on their mental health. In Australia estimates are similar, with nearly 12% of the adult population taking on caring roles.
These statistics highlight the prevalence of caregiving, but hide the complexities of carers’ experiences, as well as the profound changes to the lives they knew. While support during the care journey is important, so too is recognition and help after the person being cared for has died.
Susan* lost her husband of many years after a long illness that came with significant disability. Prior to the diagnosis their lives were full; they loved to travel and spend time with extended family around the world. They kept physically and mentally active with numerous hobbies and contributed to their community with volunteer efforts.
Gemma* devoted several years before her partner’s death caring for him. She stepped away from a flourishing career after he had a stroke and wanted her with him.
“It was hard to find any time for myself. Even getting a haircut became a challenge, and I neglected friends because I didn’t have the energy any more,” she said.
In this group of carers, Brenda* possibly found the adjustments the least challenging as her partner’s death was peaceful, she was a carer for a shorter time and she was able to transition more easily into an independent life. Her sadness that she “couldn’t make everything better” for him did continue to interfere with her life, however.
While the physical and practical demands of caregiving are significant, all three women described the emotional labour load as the most difficult. For them, this included the profound grief of experiencing their partner’s decline, the guilt that came from being irritable and the immense loneliness of being constantly together yet increasingly alone.
In the immediate aftermath of the bereavements, they each noticed relief that their partners were now at peace and that the relentless demands of caregiving were over. Accompanying the relief was also fear and some confusion; alongside the loss of a partner was also the loss of their caregiving role.
Brenda found well-meaning comments from family and friends intrusive. “They keep asking me what I am going to do now, and I have no idea,” she said. “They seem to think I should have a plan.”
Gemma also described this unknown future: “For so many years we have lived day to day. It’s hard to think ahead about what the next few days might look like, let alone the next few months.”
Some of the unexpected adjustments were practical. Brenda found her days stretched out and she missed the structure of medical appointments and meals scheduled around medication cycles. Susan couldn’t face cooking just for herself and ate whatever she could find in her kitchen.
In this time of transition there were also moments of joy. Susan discovered her local farmers’ market and relished buying whatever she felt like, after many years of needing to prepare low-cholesterol meals. Gemma returned to her weekly tennis group and gently began to renew friendships there. And Brenda started going to movies in the daytime, which she and her husband enjoyed doing together when he first retired.
Talking together about their experiences of mixed emotions – the relief, the fear, the confusion, and moments of joy – Gemma noted the challenge of expressing the emotional complexities with people who haven’t been carers.
“People expect you to be either sad or happy, grieving or moving on. But it’s not like that. I miss Tony* every day. But I also feel more hopeful than I have in years. Both experiences are true.”
A recent study validates Gemma’s experience. While mixed emotions – like feeling both happy and sad – are processed in distinct areas of the brain, advanced cortical areas integrate these emotions into complex, coexisting experiences.
Anthony Gianni Vaccaro, a psychologist at the University of Southern California, suggests: “A better understanding of mixed emotions might help people make sure these kinds of strong feelings become cherished memories that help them grow.”
For Gemma, Susan, and Brenda, acknowledging their mixed emotions will continue to be important as they navigate this major life transition. Pointing other people to this research and asking for compassion when apparent emotional contradictions show up may also help them to feel more connected to those people in their lives who have less understanding of the complexities of caregiving.
As our populations age, the number of people in caring roles will only grow. And with it, more of us will face these challenging transitions towards new identities. Perhaps it’s time to understand the load of caregiving better, and better support one another as we navigate all the messy emotions of love, life and loss.
*All of these women have given permission for their stories to be shared. Some details have been changed for privacy.
• Gaynor Parkin is a clinical psychologist and founder at Button Psychology
• In Australia, support is available at Beyond Blue on 1300 22 4636, Lifeline on 13 11 14, and at MensLine on 1300 789 978. In the UK, the charity Mind is available on 0300 123 3393 and Childline on 0800 1111. In the US, call or text Mental Health America at 988 or chat 988lifeline.org
