When family caregivers need help, homecare companies are ready to step in. Photo © Ammentorp | Dreamstime.com

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Long before Virginian Nicole Subryan Bailey considered herself a caregiver, she was bringing a blood pressure monitor on dates.

Bailey was studying to be a nurse when she met her now-husband, who had severe hypertension. During dinners and walks in the park, she would check his blood pressure and urge him to take his medication.

Over their 27 years together, Bailey’s caregiving increased. After her husband began dialysis, Bailey became what she called his “navigation health guru.” She scheduled his doctor appointments and coordinated deliveries of his medical supplies. For nearly two years, she served as his primary dialysis nurse.

Bailey understands how quickly the responsibilities of caregiving can accumulate. The goal, she realized, is not to stop caring, but to recognize when caregiving can no longer be done alone.

When a relationship shifts

After all, intense caregiving can put pressure on a relationship, whether it’s between an aging parent and adult child or husband and wife.

“He could not navigate me being a caregiver versus being a wife,” Bailey said.

One of the hardest aspects of family caregiving, especially with spouses, is the shift Bailey faced, according to Katie Garber, program manager of mental health and support groups at Iona Senior Services in Washington, D.C.

“You’re losing the person you would go to as your most trusted collaborator and, at the same time, making really important decisions on their behalf,” Garber said.

This struggle, which caregivers frequently discuss at Iona’s caregiver support group, can make the decision to ask for help feel weighty. Admitting “I can’t do this by myself anymore” is part of grieving the relationship that changed, Garber explained.

To make matters worse, the ailing person may resist outside help. Garber has seen patients agree to a caregiver one day and then, perhaps as a result of their cognitive decline, object when that individual arrives at their home several days later, a situation she calls “the shifting landscape of consent.”

Finding help without a roadmap

Bailey, who lives in Virginia, struggled to find support while caring for her husband. She pieced together resources herself, calling the 211 helpline and scouring government websites.

“You feel pretty isolated,” she said. “I swear, if it wasn’t for the internet, I would have no idea what to do.”

Her husband, a U.S. Marine veteran, received much of his healthcare through the Department of Veterans Affairs. Yet for years, Bailey said, no one told her about a program that could compensate her for some of the care she was providing.

With support from a nonprofit agency called Bay Aging, she met with a case manager who assessed her situation. Soon after, Bailey started receiving compensation.

“It is a job, so you should be paid,” she said, advising other family caregivers to find similar programs.

A case manager later connected her with additional resources, including assistance with home modifications. Bailey recalled that it felt like “the heavens had opened up” when she spoke with the case manager.

“Why didn’t anybody tell me that I had this available to me?” she remembers thinking.

For families confronting caregiving for the first time, Bailey recommends starting with a primary care doctor and securing a case manager.

Garber suggests seeking help from an aging-services organization such as Iona, where social workers can talk through a family’s situation and determine the next steps.

Full-time job

Bailey eventually brought her personal experience to professional caregiving. She has worked in home care for more than 20 years. Professional caregiving is less stressful than caring for a family member, she said.

“You still get very close to them,” Bailey said. “You also get to know the family very well.”

Steps to consider

Working with families has taught her what people should consider when hiring a professional caregiver themselves.

First, check references. Because a caregiver spends hours alone with the family member, trust is essential.

Confirm that the caregiver has reliable transportation. Bailey has met with patients whose caregivers arrived late or missed several days, leaving relatives scrambling. She suggests having a backup, whether another professional, family member, neighbor or trusted friend.

Choose a good communicator. Erick Carr, who has been both a family and professional caregiver, recommends looking for someone who is patient, communicates clearly and views the family as a partner.

Caring for the caregiver

Even with professional help, family caregiving does not always end.

Chlo’e Edwards learned that after her 66-year-old father moved to a nursing home. She still visits twice a week, schedules his medical appointments, folds his laundry and meets with his care team.

When her siblings told her, “You did a good job taking care of Dad,” Edwards corrected them.

“I’m still taking care of him,” she said. “It’s not over.”

For Bailey, years of caregiving have taught her the importance of taking time for herself. While caring for her husband, she joined a YMCA and took water aerobics classes twice a week. For a few hours, she could prioritize her physical health, interact with other people and not talk about what was happening at home.

Carr echoed this, recalling his experience caring for his mother, whose mobility was declining. Carr worked full-time but helped her at night. That period taught him how difficult caregiving can be and how critical it is to protect one’s stamina.

“Take breaks and set boundaries. Small things add up,” he said.

Nearly 1 in 5 Virginians serve in a family caregiving role. The Virginia Caregiver Coalition provides free resources and bimonthly Zoom check-ins. Email vlrvp@dars.virginia.gov. Shepherd’s Center also oversees a free support group; call (703) 821-6838.