NEWS

Number of caregivers growing, respite care striving to keep up

BY HANNAH HERNER

Caregiving usually starts with a promise. For Sherlene Fry, it was a promise she made to her father 23 years ago — eerily, a week before he passed unexpectedly.

“He said, ‘I want you to make me a promise to always be there for your mom.’ And he said, ‘if she gets sick, do not put her in the nursing home,’” Fry says.

Fry ended up caregiving for her mother for the past 11 years, before she died at the beginning of this October after experiencing Alzheimer’s disease. Fry’s mother wasn’t alone in her wishes — she’s one of the three out of four adults ages 50 and over who want to stay in their homes and communities as they age, an AARP study. This wish requires caregivers aplenty.

November is National Family Caregivers Month. The National Alliance for Caregiving and AARP counted 53 million Americans providing unpaid care for adults with health or functional needs, up from 43.5 million in 2015. That's roughly one in five people. However, the state’s Long-Term Services & Supports State Scorecard ranks Tennessee 49th for support of family caregivers.

“Family caregivers are the backbone of the long term care system. So, they provide at least 80 percent of care to aging adults and adults with disabilities…. and we need to do much better,” says Grace Smith, executive director of AgeWell Middle Tennessee.

Shortly after retiring from her 35 year career at Metro Social Services, along with 14 years as director of an assisted living facility, Caroline Chamberlain began caring for her mother full-time, and later, for her motherin-law. While she says she cherished the extra time with her loved ones, she calls caregiving the hardest thing she’s ever done. For her mother, it became advanced — handling feeding tubes and ostomy bags at various points.

“That kind of background gave me inroads into when I ended up being a caregiver, and, of course, I never planned that. But the truth is if you've lived long enough, you're going to need some kind of caregiving,” Chamberlain says.

In her caregiving span, Chamberlain had help from family on nights and weekends, and was able to hire a caregiver to come in a couple days a week — though she took the bulk of the workload as there wasn’t enough budget to hire daily help.

At the Greater Nashville Regional Council, the hotline rings, and most people on the other end of the line can’t afford care for their loved ones, says Sara Fowler with GNRC. The organization helps connect people to various resources, including state program OPTIONS, which provides light homemaker care, and TennCare’s CHOICES program, which provides nursing home level care.

The OPTIONS program does not have income requirements to qualify, but has more people on the waiting list than in the program. It’s something they hope to advocate to expand and provide alternatives to over at AgeWell.

“As advocates, when we talk about it, that's just the tip of the iceberg. We don't know how many people are out there. We suspect there's a much larger group who needs that type of support, but either doesn't know about OPTIONS, or they don't bother to put themselves on the waiting list, because you have to wait years to get service,” Smith says.

Fry’s mother received six hours per week to help with bathing and some household tasks through the OPTIONS program, and opted not to try to up to CHOICES because it required a property lien, and the house they lived in was hand-built by her father.

“There's a lot more we could do to support people, so they can [live in their home] as long as possible, because at the end of the day it's going to save the state money if people stay at home longer,” Smith says.

Outside of the aforementioned state programs, under the Family Caregiver Support Program, GNRC contracts with a couple of facilities to offer adult day care — they can pay for 104 days a year. There’s also a voucher program that offers up to $190 per month in reimbursement so caregivers can hire help for bathing, cleaning, or just sitting with those in need of care. There is currently no waiting list for the Family Caregiver Support Program, which is funded by the federal Older Americans Act.

Tennessee Respite Coalition offers a low-barrier voucher program. All the caregiver needs to be eligible is to live with the person they’re caring for and for that person to have some sort of diagnosis. While caregiver services can be hard to staff in other programs, the scarcity of finding help doesn’t apply here. The person can pay a friend, family member, church member, or even pay for camp or adult day care — anything that provides respite for the caregiver. They are eligible to be reimbursed up to $600 a year, or can pay facilities directly.

“It really is just a matter of whoever you trust to take care of your loved one,” says Jack Read, respite voucher program coordinator.

Respite programs like this are important to preserving full-time caregivers like Chamberlain and Fry came to be.

“At the very end, but there was a time or two I would leave my mother's house and just sit in the car and cry and be angry and I thought, why am I angry she doesn't want to be like this, but it was really, I realized later, was just a grieving process of losing her,” Chamberlain says.

At the end of the day, Chamberlain’s mother was able to stay at home, but at the suggestion of physical therapists, her mother-in-law moved to assisted living.

“It turned out that it was a very good move for her. Her nutrition improved, she began to socialize with other people where she had been more isolated at home. It turned out to be a very good move for her. And she made the adjustment. We weren't sure if she would or she wouldn't,” she says.

Seeing how things went with her mother-in-law made Chamberlain, now 77, re-evaluate her own end-of-life preferences.

“After that, I told my son if outlive my husband and I couldn't be by myself, and he was having to spend all his time or me live with him or him live with me, that I would choose to go to assisted living and I just wanted him to know that, and not feel guilty.” Chamberlain.

As Chamberlain observed, if you live long enough, you’ll likely need some kind of care. Statistics show that the role of caregiver is a growing one. As for Fry, she’s learning to live based on her own needs now that her role as a caregiver has come to a close and her father’s wishes were honored.

“Caregiving is a labor of love. It's a labor of love,” she says. “If a person doesn't have that love for that individual, and if they cannot handle that their life is going to totally change, they do not need to take on that responsibility.”