Let's Talk About Caregiver Burnout
You don't need to shoulder the burden alone
Illustration by Gloria Diianni
When Mary Murphy’s father developed pancreatic cancer, and then her mother was diagnosed with severe macular degeneration and Parkinson’s disease, she was determined to help them stay in their home for as long as possible.
And so, every Friday, after putting in long hours at her job as a senior executive at IBM, Murphy drove two hours from her Bedford home to her parents in Springfield, Massachusetts. She stayed with them through each weekend to help with various tasks and errands. “It was a lot to bear,” Murphy admits.
Eventually, it became clear that the arrangement wasn’t sustainable, so Murphy quit her job. Giving up her career, taking a significant financial blow, and being her parents’ caregiver were all emotionally difficult, she says. “It’s very stressful watching your loved one go through a disease like Parkinson’s where it doesn’t outright kill you; it just takes your life away a little bit at a time,” Murphy says. Regardless, she educated herself about how to best care for her parents, and soldiered on, ultimately moving into her parents’ home until her dad passed away and her mother relocated to a retirement and assisted-living community in Nashua.
Murphy is not alone in her willingness to make profound sacrifices to help a loved one who is seriously ill. As more people live longer and develop chronic disease such as cancer, heart disease or dementia, family members often shoulder the burden of providing day-to-day care. It’s an honorable role, but it takes its toll.
For example, caregivers often find that fatigue becomes a constant companion. Many of them believe they are woefully underqualified for some of the tasks they are required to do, and feel way outside of their comfort zone when they need to provide personal care for a loved one who needs help showering, dressing or using the toilet. Many caregivers feel stressed as they navigate the ins of outs of the healthcare system, and worry about the financial fallout of their loved one’s disease. And often, they do not totally understand the path that their loved one’s disease is likely to take, says Kristin Fox, ANP-BC, ACHPN, an oncology and palliative nurse practitioner at St. Joseph Hospital.
However, faced with the alternative of bringing in costly outside help, many caregivers feel they have no choice but to continue to go it alone. As they do, their own health can suffer. “I would say probably more than 50 percent of people who provide care for patients [at home] experience not only mental or emotional stress — it’s a parent or some other loved one, and there’s that whole emotional piece that goes with that — but physical strain,” Fox says.
Indeed, caring for a loved one “affects the whole person,” says Laura Berman, LICSW, a palliative care social worker at Concord Hospital. “[The caregivers’] identity becomes so tied up in the caregiving, a lot of times they push aside their own needs and who they are as a person,” Berman says. Over time, many caregivers lose touch with friends and favorite activities. They stop playing golf. They quit their book club. They cancel their gym membership because they never have time to go. One caregiver Berman knew constantly put her ill husband’s needs before her own, neglecting her own health and doctor appointments even though she sensed something was physically wrong with her. After her husband died, she finally went to the doctor and discovered she had cancer, but by that time it had advanced to the point of being untreatable.
Ultimately, caregivers need to remember that, even as they do their best to cater to their loved ones, they are responsible for own health too. Among other things, that means they must be willing to ask for — and accept — help when they need it. “Sometimes people feel they don’t have anyone to ask,” Berman says. “But many times, if you dig a little deeper, there is somebody.”
Parents, for example, are often hesitant to ask their children for help, Fox says. “They think, ‘They have their own life. They have their own children.’” But in the meantime, Fox says, “adult children will often ask, ‘How do I get my mother to let me help her?’”
Help for Caregivers
Caring for a loved one can be a tough job, leaving the caregiver physically exhausted and emotionally drained. It’s common for caregivers to feel overwhelmed and alone, but many times helpful resources are out there if you know where to look, says Kristin Fox, ANP-BC, ACHPN, an oncology and palliative nurse practitioner at St. Joseph Hospital.
If you are a nonprofessional caregiver looking for guidance or some other form of support, talk to the doctors and nurses at your loved one’s primary care office. Let them know the issues you’re having at home, Fox says, so that they can try to connect you with relevant agencies, support groups and more. Have conversations with the providers about the likely trajectory of your loved one’s disease, take care of your own health and be willing to accept help.
For more information:
AARP’s help for caregivers: aarp.org/home-family/caregiving
The American Heart Association has a downloadable PDF on the signs of caregiver burnout. heart.org.
Lotsa Helping Hands, to ease everyone’s burden when requesting help from friends and family: lotsahelpinghands.com
The ServiceLink resource center: servicelink.nh.gov