We know that taking care of an ailing person can be demanding and draining. The challenges surmount if the person has a health condition needing long-term or permanent care, such as dementia.
Caregiving, though rewarding, can lead to chronic exhaustion and burnout, often affecting the health, relationships and mental well-being of the caregiver. “Caregiving jobs can be at different levels; Therefore there are different levels of stress involved with caregiving,” said Ramani Sundaram, deputy director of Nightingale’s Medical Trust, Bengaluru.
Addressing a session at the Happiest Health – Mind Matters Summit 2023 on 9 December, Sundaram emphasised that long-term caregiving often comes with overlooked struggles, leading to burnout. She spoke about the struggles of a carer and how to prevent burnout.
The many ways of caregiving
Caregiving involves looking after the affected person’s everyday activities – shopping, feeding, bathing or being around them. “The person really reaches a stage of exhaustion,” she said.
When a person becomes a caregiver of a person with dementia or of someone in palliative care, it soon turns into a thankless job, mainly because the person receiving care is unaware that there is a problem. Comparing the situation to filling a leaky glass, she said: “The more you pour, the more spills out, and you can feel empty over time. Burnout can be physical or mental, and it does not happen in a day or two; it is a long process,” she said. It often manifests as frequent illness, loss of interest and constant exhaustion.
Sundaram cautioned that unchecked stress could soon spiral into burnout, affecting both the caregiver and the care receiver. She cited the example of an information technology professional in her 40s who was taking care of her mother with dementia. The long-term care took an emotional toll on the younger woman.
Long-term caregiving could also lead to compassion fatigue, said Sundaram. Distinguishing between caregiver burnout and compassion fatigue, she said constant exposure to such challenging situations could lead to a loss of compassion in the caregiver. “Slowly and meticulously, it sets in. You feel physically tired, mentally drained and then you have remorse towards caring for that person,” she said.
Self-care is a necessity
Carers often neglect their personal lives, forgetting their happiness and relationships while pursuing caregiving activities. However, self-care is important to caregivers, as much as for the cared-for person, Sundaram stressed: They must also give priority to their well-being, she said, likening it to `putting on our oxygen mask before assisting others’ while on a flight.
Recognising caregiver burnout is not easy, “There is confusion,” says Sundaram, citing the example of the IT professional, who was doing well in life until she became confined to being a caregiver to her mother. Her own role as a mother, wife and career person took a backseat. “When [individuals] become caregivers, they tend to forget that there is more to them than being a caregiver,” Sundaram added.
Seeking help
Even when help is available, seeking assistance in caregiving carries a stigma, said Sundaram. They must balance societal expectations of caregiving alongside their other responsibilities more so as women. Distribution of workload and self-preservation are vital, she said, sharing the story of a woman who, after 15 years of care-giving, struggled to find purpose after her mother’s passing.
Sundaram reminded caregivers, especially those dealing with progressive neurological conditions, to acknowledge the battle they are fighting. “It is like fighting a battle you are going to lose.” Accepting the reality and not neglecting self-care are essential. Caregivers, she emphasised, should make time for hobbies, socialise, seek help and take care of their own health while not losing themselves in the process.
Here are some tips to prevent caregiver burnout.
- Accept the reality: Accept that the person you care for will not or cannot acknowledge your efforts, and their condition might worsen.
- Give priority to your health and self-care: Take care of your health, eat healthy and get enough sleep.
- Ask and accept help: Seek help from family members and medical trusts. Speak with them about how they can help you.
- Seek help from mental health professionals: Tell your health care professional that you are a caregiver; share your worries or symptoms.
- Make time for yourself: Set some time aside for your hobbies, socialise and meet friends.
- Focus on what you can do: Remember that no one is a perfect caregiver. Believe that you are doing the best you can.
- Set small, realistic goals: Break large tasks into smaller steps that you can do one at a time.
