How to care for yourself as a caregiver

UNITED STATES – Once a quarter, Ms Bich Le, 52, travels from her home outside Minneapolis to St Augustine, Florida, where she moves into her father’s guest room for three weeks.

The healthcare executive is one of five siblings who take turns caring for their widowed 90-year-old father, who has lung cancer and requires constant assistance. While she is in Florida in May, she will miss her daughter’s high school prom.

The medicines Ms Le’s father takes to manage pain can “negatively impact how he treats people”, she said. When he becomes volatile, she added, she mostly tries to ignore it and not add to the stress of the situation. She tells herself to “just care for him and let it go”. But sometimes, when she is exhausted, his temper grates.

“What runs through my brain is: ‘A simple thank you would really go a long way,’” she said. “‘You have me or you have a nursing home.’”

Caregiving can be fraught for the estimated 53 million Americans who assist family members and friends. And factors such as financial strain and isolation can add to psychological distress.

In a 2017 survey of 1,081 caregivers conducted by non-profit organisation AARP, 51 per cent of respondents reported feeling worried or stressed. But there was a surprising upside: The majority – 91 per cent – reported feeling pleased that they were able to help.

How can caregivers hold on to that feeling amid the stress, fatigue and resentment that come with the role? There are strategies for feeling “less burdened or stressed by the daily problems” they encounter, said Dr William Haley, a professor of ageing studies at the University of South Florida.

Ms Le, for example, makes time every day to laugh with her siblings about the more absurd moments of caring for her father. “You kind of have to take it with some humour, because otherwise you’d just be in the foetal position,” she said.

Forget self-care, prioritise basic needs

Bone-tired caregivers often field unrealistic suggestions to do something indulgent for themselves: Book a spa treatment, take a yoga class or a weekend trip.

“Somebody saying, ‘You need to take care of yourself’, suggests that he or she doesn’t know what it’s like to be a family caregiver,” said Ms Anne Tumlinson, a healthcare consultant from Washington who founded The Daughterhood, a free online community for caregivers. “As a practical matter, there’s only so much you can do.”

Reverend Nicholas Sollom, a chaplain at Yale New Haven Hospital in Connecticut, advises caregivers to keep their routines as simple and sustainable as possible. “Make sure you have enough sleep and that you’re eating and staying hydrated,” he said.

It sounds simple, but these are the things that often get overlooked when you are focused on someone else’s survival.

“It’s all super basic to just being alive,” he added, but these few things can be a game changer for maintaining energy.

Seek support and services

Without robust government support and resources, most US caregivers have to figure things out on their own, Ms Tumlinson said. On top of overseeing another person’s health, housing and finances, she said, many caregivers also have to navigate complex family dynamics when their siblings, spouses or parents become dependent on them.

Yet the more you can educate yourself about your loved one’s illness – and find practical and emotional support – the less likely you are to feel overburdened, Dr Haley said.

Geriatric care navigators with experience helping families find services and make caregiving plans can help prepare you for challenges you might encounter. They can be hired short-term for planning or on an ongoing basis to oversee care.

Care navigators can be costly, but if the person needing assistance has long-term care insurance, the expense may be partly covered.

Working with a therapist can help you develop coping skills, and support groups run by many disease organisations, such as the Alzheimer’s Association, are also a good place to find information, coping strategies and social connection at no cost.

Remember your ‘other’ life

In the thick of caregiving, it is important to connect with aspects of your life that matter to you, said Dr Allison Applebaum, director of the Caregivers Clinic at Memorial Sloan Kettering Cancer Center in New York and author of Stand By Me: A Guide To Navigating Modern, Meaningful Caregiving.

Her father, who had Lewy body dementia, was often hospitalised during the decade she cared for him. But as a ballet dancer, Dr Applebaum realised she could use the bars on his hospital bed to stretch and practise positions, an epiphany that brought her peace during those hospital stays, she said.

If you are feeling disconnected from yourself, try taking stock of your interests and notice what you are missing – maybe it is going to church, golfing or spending time in nature, said Dr Daniel Goldman, a psychotherapist in Madison, Wisconsin.

If you can, put the time on the calendar. Scheduling a walk or time with friends “puts you on the hook”, making it less likely your plans will evaporate amid daily chores, he said.

If the person you care for cannot be alone, arrange for someone to be with him or her while you are away. Ideally, you might find a family member, friend or neighbour who can step in at a set time each week, he added.

Caregivers can also use technology for support, if they cannot completely step away. Out-of-town relatives and friends can connect with the person needing care via FaceTime or Zoom to give the local caregiver a moment to rest in another room. NYTIMES