From caring to carefree? How to overcome years of dedication after the death of a loved one | Gaynor Parkin

CPeople who provide unpaid support to family members and friends with health problems – whether illness, frailty, disability or otherwise – are common among us . Reports from the Carers Trust estimate that the number of unpaid carers could reach 10.6 million in the UK. Around three in five people will be unpaid carers at some point in their lives, and a significant number say caring for them has a negative impact on their mental health. In Australia, estimates are similar, with almost 12% of the adult population in caring roles.

These statistics highlight the prevalence of caregiving, but hide the complexity of caregivers’ experiences, as well as the profound changes in the lives they have experienced. If support during the care process is important, recognition and help after the death of the person being cared for are also important.

Susan* lost her husband of many years after a long illness accompanied by significant disability. Before the diagnosis, their lives were busy; they loved traveling and spending time with their extended family around the world. They stayed physically and mentally active by pursuing many hobbies and contributed to their community through their volunteer efforts.

Gemma* dedicated several years before her partner’s death to caring for him. She walked away from a thriving career after he had a stroke and wanted her with him.

“It was difficult to find time for myself. Even getting a haircut became a challenge and I neglected my friends because I no longer had the energy,” she said.

Of this group of caregivers, Brenda* may have found the adjustments the least difficult because her partner’s death was peaceful, she was a caregiver for less time, and she was able to transition more easily to a caregiver. independent life. His sadness at “not being able to make everything better” for him, however, continued to interfere with his life.

Although the physical and practical demands of caregiving are significant, all three women described the emotional workload as the most difficult. For them, this included the deep grief of experiencing their partner’s decline, the guilt of being irritable, and the immense loneliness of being constantly together and increasingly alone.

Immediately after their bereavement, they all felt relief knowing that their partner was now at peace and that the relentless demands of care were over. The relief was also accompanied by fear and some confusion; Along with the loss of a partner, there was also the loss of their caring role.

Brenda found the well-meaning comments from family and friends intrusive. “They keep asking me what I’m 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 lived hand to mouth. It’s difficult to anticipate what the next few days, let alone the next few months, might look like. »

Some of the unexpected adjustments were practical. Brenda found her days getting longer and she missed the structure of medical appointments and scheduled meals around treatment cycles. Susan couldn’t cook for herself and ate whatever she could find in her kitchen.

In this period of transition, there have also been moments of joy. Susan discovered her local farmers market and loved buying whatever she wanted, after many years of preparing low cholesterol meals. Gemma returned to her weekly tennis group and slowly began to renew friendships there. And Brenda started going to the movies during the day, something she and her husband loved to do together when he retired.

Speaking together about their experiences of mixed emotions – relief, fear, confusion and moments of joy – Gemma highlighted the challenge of expressing emotional complexity with people who have not been carers.

“People expect you to be sad or happy, grieving or moving on. But it’s not like that. I miss Tony* every day. But I also have more hope 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 could help people make these types of strong feelings become treasured memories that help them grow.” »

For Gemma, Susan and Brenda, it will always be important to acknowledge their mixed emotions throughout this major transition in their lives. Directing others to this search and asking for compassion when apparent emotional contradictions arise can also help them feel more connected to the people in their lives who are less understanding of the complexities of caregiving.

As our populations age, the number of people in caregiving roles will only increase. And because of this, more of us will face these difficult transitions to new identities. Maybe it’s time to better understand the burden of caregiving and better support each other 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 reasons.

Gaynor Parkin is a clinical psychologist and founder of Button Psychology