Seven Myths That Lead to Caregiver Guilt
November is Family Caregivers Month, a time to celebrate the efforts of family caregivers and to raise awareness of family caregiver issues. This year's theme, "Take Care to Give Care," reminds caregivers: "Only by taking care of yourself can you be strong enough to take care of your loved one."
Many caregivers no doubt would respond, "Easier said than done!" Today we are in the midst of a caregiver crisis. Upwards of 65 million Americans are providing care for elderly loved ones—unpaid care that the RAND Corporation says would be worth $522 billion annually. Baby boomers had fewer children, which means there's a smaller pool of potential caregivers when a senior needs help. It's not uncommon for one person to be helping an ill spouse, their own parents, and maybe even the in-laws.
Caregiving can be physically taxing—and for many caregivers, the emotional burdens are even greater. Though providing care for an elderly or disabled loved one can offer many emotional benefits, caregivers struggle with time pressure, financial challenges and their work-family balance. And they unwittingly create even more stress for themselves if they succumb to an all-too-common trap: caregiver guilt.
The first step in dispelling caregiver guilt is to examine some of these erroneous beliefs:
Myth #1: I need to be perfect. If you've found yourself gradually or rather suddenly thrust into the role of skilled nurse, care manager and senior care provider, you know there's a learning curve! This is new territory and you might question your competence. And then there's your already-existing job, other family responsibilities, your volunteer work … this is a time to cut yourself some slack and do what you can. The old saying "perfect is the enemy of good" is a good one for caregivers to remember.
Myth #2: I should have only positive thoughts about providing care for my loved one. Some situations are tough. If your loved one has dementia, it can be hard to be lighthearted and loving when the person can't remember your name and is behaving aggressively. Incontinence care is another sensitive issue. Caregivers report feeling every shade of the spectrum of human emotions—joy, love, anger, resentment, grief, you name it. Accepting that these are normal human emotions, and working through them with a counselor if necessary, reduces guilt.
Myth #3: I shouldn't talk about what I'm experiencing. Sometimes it seems that friends are so concerned about your loved one's condition that they forget to ask you how you're doing! Or maybe you're afraid you’ll bore them or seem like a downer. But we don't do ourselves or other caregivers any favors by downplaying the challenges of the role. If you're uncomfortable discussing your feelings with family and friends, try a support group. (See below for more about that.)
Myth #4: I shouldn't let my employer know what's going on. There's a push these days to make caregiving a protected class under job discrimination laws, but at present, workers have limited legal protection. Fearing caregiver discrimination, many remain quiet about their situation. But it's usually best to be open about your caregiving role. You may learn that your company offers caregiver support resources, or you might be able to arrange flex time or take family leave. And in most cases, it's better that your employer understands the reason behind absences, tardiness, or the sense that you're sometimes preoccupied with other things.
Myth #5: My needs need to take a back seat to those of the person I'm caring for. When a loved one is facing a health challenge—cancer, hip fracture, Alzheimer's disease—it can feel like an emergency situation, where your loved one's needs take precedence and your own seem frivolous. But over time, caregiving takes a toll on the health of caregivers who ignore their own healthcare, wellness activities and R & R. If it feels selfish to focus on yourself, remember another key caregiver motto: "Caring for the caregiver is an important part of caring for the patient."
Myth #6: Other caregivers have a better attitude than I do and provide better care. They might—or, they might be thinking the same thing about you! Comparing yourself to others is a surefire way to feel worse about yourself and the job you do for your loved one. Remember that another caregiver who seems to have it all together may be just as frazzled and worried as you are.
Myth #7: I should do it all by myself. This is a top myth that keeps caregivers from seeking the help they need. "Mom cared for me when I was little. Now it's my turn," they say. Maybe their loved one is giving them signals along those lines—"I don’t want a stranger in the house. I feel more comfortable with you." Or maybe it’s a self-imposed standard. Wherever this myth is coming from, it can stand in the way of accessing resources that improve the quality of life for the person receiving care and the caregiver alike.
Overcoming the myths
If the above myths sound familiar to you, or you know a caregiver who seems to be suffering from caregiver guilt, learn about resources that can be big guilt-busters:
Support groups. Bottling up your concerns, fears—and yes, resentments—just amplifies them. If you're not comfortable sharing your feelings with friends and family, check out caregiver support groups. Some groups are for people whose loved one has a particular condition, such as dementia. Support groups, in person or even online, are safe spaces to be open about your experience, and to share caregiving tips.
Counseling. If your caregiving experience seems fraught with emotional pitfalls, consider therapy sessions with a counselor who is familiar with caregiving issues and can help you work through the hard stuff. This might be a time when you learn a lot about yourself and your priorities, developing coping tools that will not only help you now, but will be of use for the rest of your life.
An aging life care professional. Also known as geriatric care managers, these professionals can perform assessments and help families develop and implement a plan of care for older adults with health challenges. These professionals will be the first to tell you that you simply can't do everything by yourself—and then, they can help you find resources that mean you don't have to! They also can facilitate family meetings to be sure everyone is on the same page and sharing the care load fairly.
Home care. Even the "I don't want a stranger in the house" loved ones who initially balk at home care usually realize that having a professional perform difficult or intimate tasks brings with it a greater sense of independence. Professional caregivers can assist with personal care, such as bathing, grooming and incontinence care. They can provide housekeeping, laundry and meal preparation. You can hire a caregiver for a few hours a week, for a respite period, or full time. By supporting the health and well-being of a senior loved one, home care promotes better health and peace of mind for family, as well.
Guilt may go both ways.
One last thing to think about: Your loved one, too, may be feeling guilt. Brain imaging shows that the part of the brain associated with stress becomes more active when we feel like we are imposing on someone. The old saying, "It is better to give than to receive," may very well be true in the caregiving dynamic. A loved one who seems snappish, depressed or resentful may well be struggling with a painful sense of indebtedness. This is another reason that engaging outside help, such as in-home care, creates a much better emotional climate and a more normal relationship among the generations.
For information on topics related to home care and healthcare, visit our Home Care and Healthcare Advocacy group on LinkedIn.