Family caregiver burden: An overlooked phenomenon

The murder-suicide was shocking and gut-wrenching.

A note left by Richard DeLucia, 71, who shot his 70-year-old ailing wife, Ann, in her hospital bed at the Westchester Medical Center on Wednesday, indicated that he was distraught over her health problems.

Planning for the future and discussing caregiving responsibilities are essential when a family member is diagnosed with Alzheimer's.

His wife had suffered a series of strokes, and he himself had undergone open-heart surgery, according to neighbors.

About 43.5 million U.S. adults provide unpaid care for someone with a serious health condition each year, says a 2015 study from the National Alliance for Caregiving and AARP.

Family caregiving can be a physically, emotionally and financially draining experience, one which can prove deleterious to the caregiver's own health, experts say.

Jean Accius, AARP

Jean Accius, who specializes in family care-giving issues and long-term care at AARP’s Public Policy Institute, said family caregivers, who provide over $470 billion worth of care in unpaid work each year, often do not get the care or support they need.

“People generally start care-giving by taking their mom or dad or spouse or neighbor to a medical appointment and, over time, as that person’s health deteriorates, they are taking on more and more responsibilities such as administering injections, tube feeding, wound care, helping with dressing and bathing, along with managing finances with little support,” Accius said. A “majority of these people are also working, and they have to juggle work and care-giving responsibilities. It is a very stressful situation because they are caring for someone they love.”

Accius said many caregivers also feel guilty about taking care of themselves.

“‘What will happen to my spouse or partner while I’m taking this respite? Can I go for a walk?  Can I take a nap?” he said. “These are questions they are constantly asking themselves. It comes from a sense of guilt, responsibility and love.”

More caregivers are men

The AARP study also found that the profile of the family caregiver in America is rapidly changing.  While care-giving traditionally has been viewed as something women do, men are increasingly stepping into the role.

Today, 40 percent of caregivers are men.

“These men are stepping up to the plate. We have an aging population; 10,000 people are turning 55 every day. Not only are people aging, they are also living longer,” Accius said. “What we have found is that it is all hands on deck.”

Joanne Taylor, the CEO/owner of Senior Helpers Westchester pictured March 14, 2018.

Joanne Taylor, chief executive officer of Yonkers-based Senior Helpers Westchester, part of one of the nation’s biggest home-care chains, said families often hesitate to ask for help.

“It is a tremendous amount of work to be responsible for another human being,” Taylor said. “It’s also unexpected most of the time. We all have very active lives and we are busy and we have something new added to us. It is a burden and I don’t think that people realize how much of a toll it takes on their mental well-being and how they let their physical well-being go, whether missing a doctor’s appointment, not exercising or not taking care of their diet.”

While not everyone can afford private home care, there are often resources available in the community such as caregiver support groups, church and community groups that can aid families in need.

The county Department of Senior Programs and Services offers a few initiatives, including the Care Circles of Westchester, which provides family caregivers with information to coordinate help for their loved ones from volunteers who share in care-giving tasks. Those include pitching in to do the laundry, giving rides to the doctor’s office, walking the dog or simply providing companionship.

Carol Bradley Bursack

Carol Bradley Bursack, the author of “Minding Our Elders,” who has written extensively about care-giving, said tragedies stemming from a feeling of helplessness are becoming all too common.

Bursack, who is based in North Dakota, saw similar tragedy unfold in her own community in June.

An 85-year-old Fargo man has been charged with murder after fatally shooting his wife during an alleged double suicide pact.

Court documents show that Louis Averson told authorities that he and 85-year-old Ila Averson agreed to kill themselves because of her poor health, the Associated Press reported.

“This was another case of helplessness and hopelessness where they did not see a future and getting the assistance they needed,” Bursack said. “Few people have the resources to pay to have in-home care for a very long time. Many people are terrified of the idea of going into a nursing home and they don’t have the finances to even begin or the resources to figure it out.”

One of the most important things families should be doing is to have a plan for care in place, said AARP’s Accius.

“We need to have conversations with family members, parents and friends and organize important documents, assess your loved one's needs and locate important resources in the community,” said Accius, who added that AARP had created a guide to help navigate the subject.

The most important question a caregiver should be asking themselves?

“Who is on my team? That is critically important," Accius said. “To the extent that you can create a team of family members, friends, (a) local church or congregation, or people in your community who can help with some aspect of the care-giving, it helps. Caregiving is a rewarding experience, but it can also be stressful. It’s OK to ask for help.”

Q&A

Here's a Q&A with Gretchen Halstead, service excellence officer at Westchester Medical Center, the flagship of the Westchester Medical Center Health Network, about caregiver services they offer:

How many people are cared for through the Caregiver Center each year?  

In the first year of operation, the Caregiver Center had approximately 3,000 visits and those numbers are increasing. The caregiver program, however, extends beyond the walls of the Caregiver Center. "Caregiver partner" volunteers round daily, especially in critical-care areas, to offer support to patients’ loved ones who do not want to leave the patient-care unit.

Why is being a family caregiver stressful?

Being a caregiver is demanding. It can bring stress, intense pressure, new demands, financial responsibilities, upheaval from typical routines, compromised health, exhaustion, feelings of being overwhelmed and a jumble of emotions that includes worry and anxiety.

The Caregiver Center, in Westchester Medical Center’s Main Concourse, compassionately prioritizes those needs and has helped thousands of families.

What can they do to emerge from the experience well? 

First and foremost, caregivers need to remember to take care of themselves — physically and emotionally.    Asking for — and accepting — the help of others is also important, allowing time for self-care.

What does your center offer?

Westchester Medical Center opened a dedicated, 1,800-square-foot Caregiver Center in its main concourse in 2016 to provide a retreat for family members to access advocacy services, emotional and spiritual support, and amenities while their loved ones receive care at the hospital.

The center provides:

- Emotional support to help caregivers and families cope and adjust to their loved one’s trauma or illness, supportive listening, a place to relax, informal conversations, and chaplaincy services.

- Physical support such as stress-busting therapeutic programs like yoga and reiki, and quiet areas that help caregivers refresh.

- Assistance in accessing needed community support.

- Amenities such as a meditation lounge, learning and resource center, consultation rooms, computer work stations, shower facilities and toiletries, assistance with hotel accommodations and travel arrangements, access to religious and spiritual worship and meals, support groups, bereavement resources and more.

Twitter: @SwapnaVenugopal

Swapna Venugopal Ramaswamy is the new audience strategist and a member of the Editorial Board for The Journal News/lohud, part of the USA Today Network. She also serves as ombudswoman for the news organization.

More stories

Why Gen Z is the loneliest generation; how to help

Period parties a controversial new trend

7-year-old heads home with a new kidney