When someone becomes ill with a chronic disease such as cancer or multiple sclerosis, theirs is not the only life that changes. Indeed, their illness can impact friends, co-workers, and most particularly, their family members. Nowhere is that impact felt more strongly than by the family caregiver: the person whom the sick loved one counts on to provide the aid, comfort and care they need to supplement the professional care they receive from their health care providers.
According to Ruth Lippin, LCSW, JD, the role of the family caregiver has evolved over the past century. Lippin, a cognitive behavioral therapist who also runs a geriatric care management company, said that in previous generations, extended families lived together longer, making it easier for individual family members to “pitch in” when help was needed.
“Today, our country places a higher value on individualism,” she said. “We’re no longer a culture in which we take care of each other. Asking for or needing help is often seen as a sign of weakness instead of being embraced. People with chronic illnesses are vulnerable, and they need the protection of our society.”
Reluctant Patients, Resentful Caregivers
Taking care of a loved one with a serious illness changes the family dynamic, especially when the caretaker is an adult child, said Lippin.
“It’s a complete transformation of the relationship from one of being cared for to one of having to be the caretaker,” she explained. “The ill parent may be reluctant to be taken care of, and the adult child often isn’t used to asserting their authority or conducting the type of care tasks that aren’t part of the ‘normal’ course of development for a parent/child relationship.”
“Consider an adult child whose parent has Parkinson’s disease and should no longer be driving,” she offered. “How do they cope with the worry that their parent may hurt themselves or others while driving? How, as their child, do they assert authority to take away the keys?”
Lippin said that it’s not uncommon for caregivers to feel guilty, stressed, anxious and depressed while caring for a loved one. Resentment also can grow quickly, especially if the family caregiver feels “forced” into taking care of their loved one or does not receive the support they need from siblings or other family members.
“Caregivers face an internal conflict about exactly what one owes another person by virtue of being a blood relative or having loved them, in the case of a well spouse caring for an ill spouse,” Lippin explained.
Financial stress also can take its toll if the ill family member can no longer work, or if the caretaker has to leave their job or cut back on hours to provide the care their loved one needs.
“I had a client with a thriving freelance business who ended up on Medicaid while taking care of her elderly mother because she could no longer work the hours she needed to support herself financially,” Lippin said. “I would much rather have a loving, doting aide caring for me than a resentful family member. Unfortunately, a family caregiver is often the only solution because hiring a live-in caretaker or full-time aide is cost-prohibitive for most people.”
Setting Boundaries and Seeking Help
Lippin said that it’s crucial for family caretakers to set boundaries to avoid emotional burn-out and the negative biological affects that too much anxiety and depression can have on their central nervous system.
“I often see caretakers who stop taking care of themselves while they are taking care of a loved one,” she said, noting that 30 percent of caregivers die before their ill loved one. “They may skip doctor’s appointments because they can’t or won’t leave their loved one alone. Or, they may stop taking their own medications if finances become an issue. One client’s very ill spouse outlived her by many years because she stopped taking care of herself to care for him.”
Lippin is adamant that caregivers need to take care of themselves as well as their sick loved one.
“Do something for yourself a couple times a week,” she suggested. “Meditate, take a yoga class or join a support group with people who understand exactly what you’re going through. Realize that you aren’t in this alone and that you shouldn’t be expected to give and give without receiving some care of your own.”
“Caretakers also can benefit from professional help available through a therapist,” she said. “A professional therapist will provide a compassionate ear and listen to their concerns without passing judgement. Together, the therapist and caretaker can formulate a plan to help them decrease their stress, anxiety, depression or other mood disorders.”
Even if seeing a therapist or hiring an aide for their loved one is not an option financially, there are a range of free online and in-person support groups and self-help information available said Lippin, pointing to resources available through her professional society, the Anxiety & Depression Association of America.
“Seek help,” Lippin urged caretakers. “As a caretaker, you need someone caring for you too.”