Ken Weller remembers wondering what people might think if they saw him out having lunch with a friend when his wife was home, possibly dying from leukemia.
That thought alone was enough to keep him from going – never mind the fact that he was and had been caring for her 24/7, through numerous bouts of cancer, surgeries and a stem cell transplant. Out of 79 doctor appointments she had that year, he had missed only two.
“Now I’ve learned that to be the best caregiver you can be, you need to get out of the house a little bit,” said the Lower Allen Township resident. “You cannot let caring for a chronically ill person define your life.”
The commitment to give care over a long span of time is one of the most selfless and, for many, sacred things one can do for a loved one – but it is also one of the most demanding. That makes supporting the caregiver an important part of the health care team’s job, said Dr. Michael Hayes, a psychologist at Penn State Health.
“The spotlight is front and center on the patient, as it should be, but we cannot forget who else is vital as a member of the team – the caregiver,” he said. “Caregivers often don’t have the tools to fix things and make it better, so a sense of helplessness, frustration and loss of control can set in.”
This can lead to worry, sadness and depression, all of which caregivers may not express because they think they must remain strong, and they feel guilty admitting it’s hard to take care of someone for the long haul.
Make your needs known
“I encourage caregivers to talk with their health care team about areas where things are falling short and ask for help if they need it,” Hayes said. “Quality patient care can no longer focus solely on the biomedical – it should include caregiving resources.”
Weller said he told the doctor he needed a sleep aid and was glad he did. “People might be afraid they won’t hear their loved one if they take something to sleep, but I think I heard every time my wife turned over in bed because I was tuned in, but I was also able to get the rest I needed,” he said.
Accept help
Any good caregiving plan should include help from others, Hayes said.
“Take a neighbor up on the offer to make dinner, let your daughter relieve you so you can go get your hair done,” he said. “Being a caregiver can be exhausting and isolating, so you must do something outside the caregiving role, and it means a lot to other people to be able to help.”
In Weller’s case, a simple call to his church elicited more meals than they needed, offers to do errands and more.
“I was stronger than I thought I could be with what I had to do, but I was weaker than I should have been because I didn’t ask people for help soon enough,” he said. “This is a marathon, not a sprint.”
For those wondering how to help the caregiver, Hayes advises offering to do specific tasks rather than giving a blanket offer to help and performing simple acts of kindness, such as a dropping off a gift card to the grocery store.
Reach out to someone who knows
Talking things over with other caregivers is another important way to cope, Hayes said. Penn State Health offers many condition-related support groups, and there are often groups operating in communities.
“People in the same boat know how to talk turkey,” Hayes said.
Eating well, getting exercise, soaking in some sunshine and taking time for a good shower are other ways caregivers can care for themselves, Hayes said.
Overall, Weller says it’s important to meet the challenge of caregiving with a sense of humor.
“That might seem like a terrible thing to say, but one of the reasons our support groups are successful is because they are upbeat,” he said. “A husband may say he doesn’t want to leave his wife for a break, and I can say, ‘Hey, maybe she’d like to talk to someone besides you,’ and that brings a laugh, but I’ve also made my point.”
As for his wife, Joyce, is now in remission from leukemia, Weller said he’s experiencing another challenge – giving her back control of her life when he is so used to making all the decisions.
Whatever their needs, caregivers should voice them because, Hayes said, “exceeding your limits puts you at risk of going down yourself, and then where will your loved one be?”
For more information on the cancer caregiver support group at Penn State Health, contact Katie Pennay at kpennay@pennstatehealth.psu.edu.
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The Medical Minute is a weekly health news feature produced by Penn State Health. Articles feature the expertise of faculty, physicians and staff, and are designed to offer timely, relevant health information of interest to a broad audience.