Jennifer, as a devoted daughter, contends with overwhelming guilt. She was overcome with emotion at having made the decision to put her mother into residential aged care. This painful choice was the culmination of years spent stressfully balancing work and caregiving for her ailing mother, recently diagnosed with dementia. Jennifer is the last sister to be caring for her mother. She commutes over 80 kilometers roundtrip three days a week to check on them and provide companionship. For all her dedication, Jennifer now faces a heavy emotional toll. She experiences her mother’s cognitive decline and the subsequent decline of her own physical health in real time.
Jennifer’s journey with her mother began when they moved in together on Jennifer’s property six years ago. For many years, those supports allowed Jennifer to care for her mother at home. As her mother’s health decreased and home service washed out with consistent help, the weight grew more cumbersome to bear. Jennifer explains, “You find it very hard to run your own life.” Yet this insurmountable struggle led her to a devastating decision. She had never intended to put her mother into care.
The Impact of Caregiving
As the primary caregiver to a medically complex child, the demands of caregiving have had an enormous impact on Jennifer’s personal well-being. Since her mother went into residential care 18 months ago, Jennifer has put on 10 kilos. This weight gain is symbolic of the mental and emotional stress she’s endured throughout this difficult period. “My feelings of guilt and failure were overwhelming,” she admits. Each return trip home for Jennifer leaves her heartbroken. She can’t stop herself from looking back to the times when her mother was more mobile and independent.
Jennifer recalls, “She was walking when she went in 18 months ago. Now she’s gained 10 kilograms, and her cognitive decline has been noticeable.” After losing both her mother and child, Jennifer carries an emotional weight beyond comprehension. She feels like she has put her mother with strangers in a setting not even close to providing for her needs. “So much slips through the cracks where she is,” Jennifer laments.
Annabel Reid, an expert on family caregiving issues, emphasizes the invisible challenges that family caregivers, such as Jennifer, navigate every day. “Being a carer comes with a lot of stress — there is administration on behalf of the other person, as well as physical care,” Reid explains. It’s easy for caregivers to put their own health and happiness on the back burner while they focus on their loved ones. We consistently hear from family carers that they are putting their own needs last. Even more, their own well-being is at stake—both physical and mental health.
The Challenges of Finding Support
Too often, caregivers face systemic barriers that prevent them from being able to care and caregiving from being a sustainable endeavor. For Jennifer, this meant living with an unstable source of home services that often didn’t show up when scheduled. The funding she was receiving for her mother’s care was not enough to afford the proper level of care as well. Consequently, Jennifer found herself working out her plans for work and everyday life around her mom’s needs.
Reid emphasizes too, the lack of training and resources for family caregivers. Yet these caregivers frequently report feeling both overwhelmed and underprepared for their difficult tasks. “Carers are like an invisible workforce with no training,” she says. “They are trying to make the best possible decisions to care for other people.” When non-playable characters caregivers don’t receive support, they instead feel like failures and resentful. Pretty soon, they start to doubt themselves and worry that they’re not making the right decisions.
Jennifer’s experience reflects this struggle as she grapples with the responsibility of ensuring her mother’s well-being while managing her own life. This emotional burden is compounded by the perpetual burden of having to second guess if she is doing enough. “They often feel guilty about ‘are they doing the right thing?’” Reid adds.
Coping with Guilt and Finding Solutions
Jennifer takes on this daunting road trip with strength and grace. She continues to look for innovative solutions to improve her mother’s quality of life and cultivate her own spirit. She understands that calling for help is a sign of strength, and accepting help with even minor tasks can relieve the load a bit. Reid emphasizes that even minor assistance can make a significant difference: “If someone can help you with just the smallest of tasks … like picking up some groceries … that can just give you the small breather you need to get through.”
Although Jennifer continues to battle an uphill fight, she remains committed to her mother’s care and health safety. She is committed to pushing for better solutions in care. By sharing her story, she hopes to help other students pursuing their passions with similar challenges feel less alone.
