Being a family caretaker is both a blessing and a burden. There is satisfaction, even joy, in helping those you love, those who once cared for you, those with whom you desire more time. But with that privilege comes a responsibility that weighs heavy, even on the best of us. If you haven't experienced this yet, odds are you soon will.
America is aging. As it does, "Boomers" will have more health issues and require more help. In just the past year, loved ones, 53 million of them, proved great at stepping up without pay to assist family and friends. What they aren't great at is prioritizing care for themselves.
Being a family caregiver is emotionally and physically draining. This is unlike caring for a child whose development will progress, "This is the exact opposite," says Sharon Wofford.
Sharon is caring for her 68-year-old husband, Blaine, who has advanced Dementia and Parkinson's. Diagnosed in 2014, he has required constant care since 2019. "They talk about memory loss, but it is so much more than that."
Blaine can no longer dress, shower, or use a toilet without assistance. Turn your back, and like a child, he might wander outside and into traffic. Yet, unlike a child, the hard truth is, Sharon's husband will not improve. He will continue to regress.
It is no wonder that most caregivers suffer from increased physical and emotional ailments of their own. Up to 90 percent of family caregivers surveyed by the state in Texas report their caregiving obligations to be stressful.
"Most people don't see the whole picture," says Patty Zukas, a social worker with Heart to Heart Hospice. During a short visit, it is easy for family and friends to underestimate the actual toll primary caregivers pay to constant worry, vigilance, exhaustion, and isolation. "A lot of people don't realize how much they have given up to be a caretaker."
It's arduous, but like many caregivers, Sharon has also found solace through the grueling process. "If I weren't doing this, I would have so much more guilt and grief," she says.
We all cope in different ways, says Zukas. Through caregiving, relationships evolve, sometimes mend, people have time to accept the long-term fate of a loved one's passing, and some find out more about themselves.
"I do feel proud of myself sometimes," Sharon says. To provide constant care by herself for 18 months through the pandemic, she tapped into an inner strength she didn't know she had. "I didn't think I had it in me, come to find out I do."
It is not ideal, though. "Don't be by yourself, get help," says Carol Gillespie, who was the primary caregiver for her husband Frank from the time of his Alzheimer's diagnosis in 2014 through 2017. During that time, Carol learned, "you have to take care of yourself, or you're no good to anyone."
Study after study shows that caregiving compromises the caregiver's health. To combat this, they need support and respite. Professionals say it's essential to talk to family and friends and become educated about the illness a loved one faces. If the caregiver's family can't relate, they should seek a professional and connect with a support group.
Sharon and Carol both believe in support groups. They actually met at a Heart to Heart Alzheimers Support Group.
"I didn't think that would be for me," says Sharon, who started going for the included respite care. "I had no idea it would be as beneficial as it was. The support group is a God sent."
Carol's husband is now at Regent Care Center of The Woodlands. She spends about three hours a day with him and still attends her support group. The most important advice she's learned includes letting people help.
"If they offer, let them do that," Carol says. She believes you have to get over feeling embarrassed for your loved one and yourself. In her experience, most people want to help but don't know how.
Sharon agrees. Let neighbors know your circumstances, and don't be afraid to seek help, even if it is just for an hour. "It could make a world of difference," she says.
Even with universal agreement that respite benefits both the caregiver and care recipient, paid respite is impossible for many to afford. A small percentage of people at the top of the economic scale have insurance that will cover it. A small portion at the bottom qualifies for government aid. The ninety percent in the middle are mainly on their own. One of the main reasons so many care for loved ones in their home is the lack of a suitable alternative.
"They can't afford any other option," Zukas says, "I tell them, I hope you planned well or have kids who can pitch in."
Texas HHS considers informal caregivers to be the backbone of the long-term care system. In 2017, informal caregivers in Texas provided an estimated 3.2 billion hours of service. Their services saved Texas an estimated $34 billion in annual healthcare costs.
"Family caregivers are woven into the fabric of America's health, social, economic, and long-term services and support (LTSS) systems," states Caregiving in the US 2020, a study conducted by the AARP and Nation Alliance of Caregiving (NAC). "As the country continues to age, the need to support caregivers as the cornerstone of society will only become more and more important."