Care For Yourself So You Can Care For a Loved One

The lights had been switched off in the church social hall, and about 40 people sat at tables taking deep, measured breaths.

“In, two, three, pause. Out, two, three, four, five, pause,” intoned Cheryl Harlan, an adjunct professor of meditation at George Mason University. Harlan was leading a relaxation exercise at the Caregivers Treat, a half-day program for family caregivers sponsored by Shepherd’s Center of Oakton-Vienna in partnership with AARP Virginia, Arden Courts of Annandale-Fair Oaks, and Insight Memory Care Center.

The annual event, held this year on September 5, 2019, at Emmanuel Lutheran Church in Vienna, featured speakers offering tips for caregivers as well as massages, blood pressure screenings, lunch, and musical entertainment by harpist Jude period Deusterhaus.

Susan d. Garvey, executive director of Shepherd’s Center of Oakton-Vienna, noted that the Caregivers Treat is part of the organization’s mission to provide programs and services to help people lead productive and independent lives for as long as possible. She said its 250 volunteers provide a human connection as part of their vision of “a world without loneliness.”

AARP Virginia State President Carol Downs, a former executive director of Shepherd’s Center of Oakton-Vienna, praised AARP’s commitment to providing resources to family caregivers including a 24-hour call center and information such as its Prepare to Care booklet. Downs said AARP has also begun focusing on caring for those who had served in the military.

Two main themes emerged from the day’s sessions with experts and comments from the attendees: the need for caregivers to proactively seek out help, particularly when loved ones are nearing the end of life; and for caregivers to take care of themselves so they can better care for their loved ones.

Chip Cagle, director of Spiritual Engagement at Capital Caring Hospice, said that about half of family caregivers who provide support over a significant period of time need hospital care because of their efforts. He commonly hears people say about hospice care: “We wish we would have called you earlier.”

Among the hurdles to seeking timely hospice assistance, he said, are misconceptions about the meaning of hospice care and its focus. Soliciting comments from the audience, Cagle noted that many people are surprised to learn that so much of the focus of hospice care is on the family caregiver.

“What they don’t understand is that we have an eye on the loved one and an eye on the caregiver,” he said.

Often, people are reluctant to seek hospice care because they mistakenly believe that it means the family and the patient have “given up.” But Cagle said hospice care can enhance and even slightly prolong a terminally ill person’s life.

Most people don’t realize that Medicare covers hospice care and has had strong bipartisan support since the benefit was added decades ago. As a result, “a lot of people don’t access it soon enough.” Hospice care also extends to bereavement and grief support after the death of the caregiver’s loved one. That support includes seminars such as how to cope with joyous holidays after the loved one’s death.

Deciding when to seek hospice care varies among each individual, but Cagle warned caregivers not to be frightened away from such care by doctors who may say that it is not yet needed. He urged caregivers who sense a decline in a loved one’s health to ask for a hospice consultation so that they have better information about when it may be needed.

Audience members shared their caregiving experiences during a free-wheeling question and answer session that covered topics such as what do you look forward to each day as a caregiver, how to deal with siblings who may be unable or unwilling to help provide care, and how to deal with the guilt felt by many caregivers.

Debra Steppel, of Reston, whose mother died almost two years ago at 76, said she had come to several of the previous Caregiver Treats and came back this year to share her insights and to “pay it back” to the caregivers’ community for the help she received. “I’m here more to give than to get.”

Maddy Cassell, of Annandale, whose husband died in July at age 70, said she had been a caregiver for eight or nine years and had attended several of the Caregiver Treats and had already signed up for this year’s event before her husband’s death. She said she came to see friends she had met over the previous conferences and to share her experiences.

Rochelle Thompson, of Fairfax, said she came to learn more about ways to help provide care for her husband, who has heart problems and memory loss. “I need to know as much as I can about planning for the future,” she said. “I feel I’m doing a good job, but I don’t know everything. I want to make sure I’m on the right track.”

After the relaxation exercises, Lindsey Vajpeyi, director of education and outreach at Insight Memory Care Center, explained how caregiving is like a cruise. In August, several caregivers and their loved ones and a few Insight staff took a cruise to Bermuda. Vajpeyi said the cruise reinforced five lessons about caregiving:

• The caregiver is the “captain of the ship” in overseeing care. But just as a cruise ship captain doesn’t have to do every job on the vessel—including cooking, cleaning and maintaining the engines--neither does the primary caregiver.
• It takes a crew to give care. That crew could involve other family members as well as medical, financial and legal professionals, volunteers, a support group, and others who can provide resources.
• Chart your course. The caregiver should try to learn what lies ahead in terms of the progression of the loved one’s disease or condition and what steps should caregiver's at specific decision points that are foreseeable.
• Don’t rock the boat. That means don’t argue about things that don’t matter, even if the loved one makes erroneous statements or accusations such as claiming that the caregiver hasn’t visited when that is incorrect. “Choose your battles,” Vajpeyi said. “You don’t have to be right all the time.”
• Soak up every moment. Appreciate the small moments of peace, enjoyment, and togetherness.

Vajpeyi noted that Insight offers a Memory Café at various locations in Northern Virginia where caregivers and their loved ones can socialize. The occasional caregiver cruise allows caregivers and their loved ones to travel safely while leaving the itinerary details to someone else.

Insight also offers resources to support caregivers not only while their loved one is alive, but afterward as well, she said. The center offers a Caregiving at a Glance booklet which answers many questions typically faced by caregivers.

For caregivers who want to learn more about how to support their loved ones while taking care of themselves, here are two upcoming events:

• Caregiver Bootcamp, sponsored by Insight Memory Care Center, Sept. 28 from 9:30 a.m. until 3 p.m. at the center, 3953 Pender Drive, Suite 100, Fairfax. Register online at InsightMCC.org.

• The 33^rd Annual Caregiver’s Conference sponsored by the Northern Virginia Dementia Care Consortium, including AARP, on Nov. 11 from 8:00 a.m. to 3:30 p.m. at the Korean Central Presbyterian Church, 15451 Lee Highway, Centreville. This year’s theme is The Art of Friendship in Caregiving. The fee is $35. Register at nvdcc2019.eventbrite.com. Seating is limited.