The New Tools for Helping Aging Parents

Her parents’ home needed a wheelchair ramp and hospital bed. Her mom needed in-home care. Her dad was overwhelmed. Ms. Hazama was losing her temper.

“I was mad that my mom didn’t try to walk and mad that my dad didn’t make her,” says Ms. Hazama, of Oldsmar, Fla. The pandemic added another layer of anxiety.

A friend directed her to Theresa Wilbanks, a certified caregiving consultant, who offered advice, resources and support remotely.

Ms. Wilbanks, who lives in Falkner, Miss., started Sustainable Caregiving to help other caregivers. She told Ms. Hazama that she needed to accept the fact that her mother may not walk. “All I can do at this point, as hard as it is for me to comprehend, is to help my mom be comfortable,” Ms. Hazama says.

Sparked by a new set of needs from patients and their families over the past year, professional caregiving consultants like Ms. Wilbanks, who are often former caregivers, began creating video series on such subjects as caregiving as a couple and setting boundaries.

New businesses formed. A company called Mettle Health, co-founded by palliative care physician BJ Miller, who counsels families over Zoom, emerged in part because of the growing acceptance of remote connections and online support. Established support organizations like AARP have expanded virtual support.

In recent months, Liz O’Donnell, Boston-based founder of Working Daughter, an online community of women caregivers, would wake up to 10 requests waiting every morning to join her private Facebook group, compared with about 10 a week before the pandemic. “Everyone had questions,” she says. “Am I doing enough? Do I leave them in nursing care? Do I bring them home?”

At the end of last year, Ms. O’Donnell, who cared for both parents, began offering monthly small-group coaching video calls for members, who pay a fee of $9 a month. They talk about fathers who shouldn’t drive but still do and siblings who don’t help.

“If your sibling has indicated they won’t help—either verbally or through actions—move on. Preserve your energy for caregiving. Don’t spend it on the sibling,” she advises them.

Amy Goyer, a caregiving expert with AARP who had never conducted live Facebook interviews, began a series of them during the pandemic. She put them on the AARP Family Caregivers Discussion Group, including ones on finding respite care, spotting frauds and puréeing food. She posted open questions about the most helpful gizmos and gadgets. Hundreds responded.

“Everyone pivoted to online and Zoom,” she says. “Existing programs metamorphosed.”

Seeing how people were stressed because of the pandemic, Denise Brown, who trains and certifies caregiving consultants, began offering a free monthly webinar on how to create a Family Emergency Plan, which can include sharing folders on a Google drive with siblings containing information, such as insurance information and doctor’s names and numbers.

“You have to manage worries so they aren’t rattling around in your head,” says Ms. Brown, owner of the Caregiving Years Training Academy.

Dr. Miller, who lost three limbs and nearly his life in college, specializes in serious illness and end-of-life care. When he started Mettle Health in 2020, he envisioned a program that would offer family support outside the healthcare system for people with serious illnesses and those caring for them. Dr. Miller, who lives in Mill Valley, Calif., offered hourlong confidential consultations, which cost $220 an hour.

Wanting to reach those who couldn’t afford the fee, he began hosting free hourlong webinars on caregiving and communicating. Those sessions offer strategies and answer questions about burnout, guilt and family conflicts, and often include a supplemental video to answer overflow questions.

His messages are often simple. When people wonder if they’re doing enough, he says, “Are you doing what you can? Then leave it at that.” He also says it’s important to see people for what they are and what they are going through, without judging. “Seeing and not judging is one of the holiest things we can do.”

This summer, he hopes to host smaller online sessions with groups of about eight to 10 people to meet online and share concerns and ideas.

Robert Jenkins turned to Dr. Miller after his mother fell and broke her hip and couldn’t return to her Chicago apartment.

It was the middle of the pandemic. Mr. Jenkins lives in California, with siblings spread across the country. Over the course of several Zoom calls, Dr. Miller guided him and some siblings through the questions to ask doctors, reviewed advance directives and important conversations to have with their mom.

They discussed big concerns, like the end of life, and smaller ones. If she wanted to eat a lot of candy, let her, he told them.

“His goal is to see all of us have as few regrets as possible,” Mr. Jenkins says.

Dr. Miller also encouraged family members not to avoid difficult subjects and questions.

If their mother talks about death, don’t be afraid to pick up that thread, he told them. “It was very freeing,” says Sarah Barker, Mr. Jenkins’s sister, who lives in Boston.

On a recent visit, Ms. Barker asked her mother whether she would like to sit down with Ms. Barker and write her obituary. “Yes, I would like to do that,” Ms. Barker recalls her saying.

Her mother has talked about getting up to the family cabin in northern Minnesota this summer. Ms. Barker is looking at the best way to get her mother there comfortably and safely.

“If it would give her joy, why not?” she says.

Six Tips for Family Caregivers

Communicate: That means listening as well as talking. Provide updates about doctor’s appointments, changes in work schedules, travel plans and family outings. Expressing yourself clearly and effectively is important and therapeutic, even if someone doesn’t agree or accept what you have to say.

Share responsibilities: Family caregiving isn’t a one-person job. Everyone can play a role. Even if they live out of state, they can do research and make calls. Decide who is free to travel to medical appointments, prepare meals a few times a week or make sure bills are paid.

Honor wishes if possible: Don’t impose your will on whomever you’re caring for. Try to let a person be as comfortable and autonomous as they can be. Be self-aware and know whether what you are doing is helping.

Don’t run away: Sometimes being there is all you can do. If you can’t visit or live far away, you can call. The sound of a voice is important.

Accept reality: Some things you can change and some you can’t. You can’t make someone better. You can make them comfortable, loved and accepted.

Practice self-care: Easier said than done. But it’s so important to avoid burning out physically, mentally and emotionally. Keeping a routine can help so you don’t feel out of control. Figure out what it is that makes you feel vital—a walk, run, journaling—and keep doing it. Tell people about it so they respect its importance and help you keep it in your life.

Write to Clare Ansberry at [email protected]