Caregivers: Home Health Care isn't for Everyone

OGDENSBURG – Following comments from newly elected Assemblyman Scott Gray (R-Watertown), that he would rather see the state focus its funding efforts on people “aging in place” than skilled nursing care, several people who served as caregivers for loved ones are speaking out to let him and the state’s other elected leaders know that home health care isn’t for everyone.

Janet Geddes served as a caregiver to her mother for 18 months. Sheree Trainham managed home care for her grandfather for two years, and Susan Denesha provided and managed care for both her father and stepmother for roughly two-and-a-half years.

Ms. Geddes said the 18 months she was providing care to her mother were easily the most difficult of her life. 

“I was providing 24/7 care for my mother,” she said. “I could barely sleep. The sleep deprivation took a big emotional toll on me.”

Ms. Geddes said she did have family who provided some relief, but she was hesitant to ask them for too much help, in case the time came when they would have to step in and take over the 24/7 care.

“I had to keep something in the reserves,” she said, explaining that her mother had dementia, which eventually lead to her mother not recognizing her as her daughter, but rather as her caregiver.

“I had enough savings that I could give up my work, but most people can’t do that,” she said. “I feel like my experience shows that not ever senior is appropriate for home care.”

Ms. Geddes said she doesn’t understand how someone could feel like home care is the only answer.

“It’s going to become an even bigger challenge with all the baby boomers,” she said. “There are already nursing shortages and CNA shortages, where do they think they’re going to find the staffing to care for everyone at a 1:1 ratio, and isn’t it going to cost more to do that? We already have a system in place to care for our seniors, starving it out just doesn’t make sense.”

Mrs. Trainham said the decision to transition from home care to skilled nursing care provided her family with a gift that allowed them to cherish their time with her grandfather, rather than constantly struggling to manage his care themselves.

Her grandfather had dementia, as well as several other health issues, which made each day a “safety nightmare and pharmaceutical adventure.”

“My strong, funny, loving Grandpa was at best sad, and more often in tears, because his body and mind were no longer working as they had before. He was aware of the decline and felt powerless,” she recalled. “I was at best sad, or more often on the verge of tears, because even with at home help, I was spending all of my time sorting through logistical and pharmacological chaos with little or no progress.”

Her grandfather’s frustrations soon became her frustrations, and they were eventually both feeling the same way – powerless.

“As I sought to organize and balance the demands of full-time at-home care for Grandpa, family emotional wellness, and a full-time professional career, I too was completely aware of our family’s decline and we all felt powerless,” she said. “It was truly not a matter of if, but when a scheduling error, a medication mix-up, or a fall injured the most vulnerable member of our family. We needed to act before a crisis occurred.”

So after two years of managing this process, the family decided to move their grandfather into a skilled nursing facility.

“Moving a loved one from home to a long-term living facility is difficult, but may be the very best solution for the emotional and physical health of the loved one and his or her family,” Mrs. Trainham said. “The move provided us with time to cherish our grandfather, and each other, to recall and relive great family moments, to make new memories, and to say thank you – to him, to each other, and to the people who supported us. The move allowed us to embrace our grandfather’s final days, not as an end, but as a loving transition.”

Mrs. Denesha also juggled a full-time career with providing home care for loved ones, though her family did contract with a home care agency who provided assistance four times per day, although she can recall signing a contract that stated if their paid provider was unable to make it that day, a family member or someone else who would fill-in in their place.

“I was always one phone call away from a very long night, before having to go to work again the next day,” she said.

Mrs. Denesha said she would wake up in the morning and go to her dad’s house before going to work and then return to her father’s house at the end of her work day, often time spending weekends there as well.

“That went on for two-and-a-half years. It was very difficult, but when you’re in the middle of it, you don’t realize it and you think you’re doing great,” she said.

Mrs. Denesha said her ah-ha moment came one day when her father walked outside to get the mail.

“The mailbox was on the same side of the road as their house, but I could tell by the look on his face when he turned around that he had forgotten where the house was,” she recalled.

It was at that moment she decided her parents needed more care than she was capable of providing at home.

“As soon as they were here (United Helpers Rehabilitation and Senior Care), we realized we weren’t doing as good of a job as we thought we were,” she said.

All three ladies said their intent in speaking out is not to bash home health care, but rather to remind policymakers that in the world of healthcare, there is no one-size-fits-all solution. Hospitals are important. Home health care is important, and skilled nursing facilities are important.

“Our loved ones deserve a place to go where they can receive quality care when they can no longer care for themselves or stay in their own homes,” Mrs. Denesha said. “I wouldn’t want to see anything happen to this place (United Helpers Rehabilitation and Senior Care).