Simpler days of just picking up and going to the store are long gone for Flo Barnes, who is on call 24-hours a day for her 79-year-old husband who has dementia.
Amelia Kalinowski vividly remembers the feeling of isolation when caregiving for her husband, who suffered lung cancer. “Neighbors don’t like to visit sick people,” she recalled.
And Vic Pinho’s mother, who has dementia, frequently lashes out at him with verbal assaults. “She is not the same person and it’s emotional for me,” he said. “I truly get depressed.”
Being a caregiver can be as much a privilege as a chore, a responsibility that is riddled with an on-and-off feeling of complete despair and isolation, as well as one that can provide a sense of dogged gratification. To step in when the person is not “all there” mentally or physically or both is every bit as demanding as a full-time job can be. But even a paid position offers breaks, weekends off and vacations.
Whether this role was thrust upon someone who reluctantly stepped in to assume the multitude of responsibilities or not, the person inevitably faces stress, frustration and monumental decisions at every corner. That means a rollercoaster ride requiring lots of physical and mental energy.
That’s why, when helping a loved one in poor health, it’s vital to be in the best possible health yourself.
Dr. Rebecca Rustine, a licensed psychologist; and Dr. Deepti Sadhwani, a specialist in internal and bariatric medicine, spoke to about 100 caregivers at a panel discussion last week sponsored by the Visiting Nurse Association of the Treasure Coast at Captain Hiram’s. They focused on the personal needs of the caregiver, a healthy diet among them.
“We want to drive home the message, ‘how am I going to take care of my parents myself if I’m nutritionally and hormonally imbalanced?’” said Sadhwani.
You do this first, she said, with a good diet, ideally one high in protein and fish oils, low in carbohydrates and sugars.
“If you can’t sleep, are hot flashing, and are irritable, how are you going to be a proper caregiver?” she asked. “You become a zombie if you are not hormonally balanced. You have to get grounded. You have to say, ‘I have to help myself.’”
Caregivers often are older, with health or stress problems of their own. In a recent poll by the National Opinion Research Center and Associated Press, the average age of a caregiver was 67 for someone looking after a spouse and 58 for someone caring for a parent. Altogether, almost one in seven Americans will require long-term care at some time after age 65. According to the National Alliance for Caregiving, more than 60 million Americans are looking after a family member or other loved one.
“You have to take care of yourself first,” Rustine said.
That’s exactly what Joe Coakley did after slogging through caregiver duties for a few years and realizing he had to make changes.
The 70-year-old Vero Beach man cared for his 90-year-old mother, running over to her house on a daily basis to fix meals, answer her questions, over see medications and more. A type 2 diabetic, he was lugging an extra 60 pounds around and after a few glasses of wine and a high carbohydrate dinner each evening, found the couch a more enticing destination than his mother’s house a mile away. It was a real push to do his duties, although he did them.
He realized that he couldn’t care for his mother adequately if he continued on that path.
“I looked back on my own health and decided to take care of myself,” he said. With Sadhwani’s help, he improved his diet, lost weight and eventually stopped needing to take various medications.
“I’m not sure, if I stayed on the same course of eating, I’d have been able to take care of my mother as well,” said Coakley, adding that he recently moved his mother into assisted living. “When you are not healthy, it’s easy to become a couch potato.” He found clarity in his decision-making and stability in his emotions once he improved his health.
Rustine, clinical director for behavioral health problems at Whole Family Health Center in Vero Beach, said it’s vital for caregivers to have support, social contact and a feeling of control in their lives.
She sees how depression overtakes caregivers.
“They sometimes have unrealistic expectations of what they can and should do as caregiver and that can cause increased stress and depression,” she said. Sometimes, “they are grieving at the loss of their own life,” meaning the life they lived before all the new responsibilities and pressures. They need to accept that they can only do so much.
Craig Schlitt, 54, of Vero Beach, looks after his 85-year-old mother, who has become forgetful and has balance problems, possibly from hydrocephalus. “It gets dicey because she is very difficult,” he said. “I have the responsibility of knowing that she relies on me. She is not always the most thankful and kind – still, she has the needs.”
But as a man with HIV and a history of alcohol and drug problems – now nine years clean – he can’t neglect himself.
“I like to take care of people, and make people happy,” he said. “Sometimes it’s hard to take care of myself.”
Schlitt felt burned out and confused, like “his mind was going in all directions.” Rustine helped him to manage his time better and to be vigilant about his own needs.
“Don’t deny this is a very difficult thing,” she advises other caregivers. “Educate yourself on the disorder.”
Vic Pinho, 48, helps his 70-year-old mother, whose dementia means that she has no filter in conversation and can be harsh in her tone and words, without realizing it.
He also got counseling to help him sort through the challenges of being a caregiver.
“I was feeling alone and hard on myself thinking I can make things better for her,” he said. “But I can’t.”
Local resources for caregivers include a non-emergency number – 211 – that they can call to get information on financial assistance, housing options, health care and other topics. As well, a group called COPES meets the first and third Thursday of each month in Sebastian (10:30 a.m., First Presbyterian Church, 1405 Louisiana Ave.) to give caregivers practical training and support. Help is also available from the Alzheimer and Parkinson Association of Indian River County, which meets the second and fourth Thursday every month in Vero Beach (10:30 a.m., 2300 5th Avenue, Suite 150).
