This article is not meant to diagnose or provide medical advice—that responsibility lies with physicians.
Perhaps the only thing as tough as being ill is caring for a loved one who is ill. While it is deeply satisfying to know you are devoting yourself to lessening the suffering of a person so close to you—a person now vulnerable and in need—this all-consuming job inevitably takes a toll.
Indeed, numerous studies cite caregivers frequently suffer from lower life satisfaction and elevated depression. Yet despite the negative health aspects of living often 24/7 in a pressure cooker, many caregivers don’t feel entitled to cut themselves any slack. One patient, Dana (name has been changed to protect the privacy of the patient), helping her mother care for her brother who has leukemia, told me, “my life right now doesn’t matter.”
This is an extremely self-destructive attitude. With 2015 figures citing approximately 43.5 million caregivers providing unpaid care to an adult or child in the year, this is an attitude that for the good of all must be disabused immediately.
You are suffering from caregiver guilt if you:
• Fear you are not doing enough for your loved one
• Feel awful because you crave the luxury of an evening to yourself
• Consider yourself a despicable person for momentarily having the thought your
terminally ill loved one might be better off if he or she died and was no longer
Guilt is one of the most useless emotions in the human palette of feelings. For the caregiver it can be particularly insidious.
A patient, Joyce (name has been changed to protect the privacy of the patient), took her mother into her home after the older woman’s Alzheimer’s diagnosis. Joyce sighed, “I expected giving back to my mother, who did so much for me for my entire life, to be 100 percent fulfilling. But it’s not.” That realization led to such guilt and shame that Joyce found herself occasionally snapping at her husband—which of course led to more guilt.
If you don’t give yourself a break, you will break and be unable to adequately care for the person who needs you at your best. Ignoring your own needs may seem like your duty but your real obligation is to make sure to eat well, get sufficient sleep and find time to laugh and remember there is an outside life, so you can efficiently care for others.
In a rare lucid moment Joyce’s mom told her, “honey, you’re spending too much time with me. I’m worried you’re gonna crack. You and Bill need to hire a ‘mother-sitter’ and go out and have fun!”
It is not uncommon for a caregiver to—well, get mad! Most of the time the anger is aimed at the disability, but sometimes the toxic welter going on inside your head can feel directed at the person in the bed.
Remember that human palette of emotions? Resentment in this circumstance is normal, particularly toward a parent, spouse, or whoever is closest to you, or the subject of your care, especially when he or she does not act appreciatively toward you. Just because your loved one is ill doesn’t turn him or her into a saint or martyr. And given that nearly 25 percent of caregivers spend at least 41 hours a week doing unpaid tasks for their ill loved one, how can nerves not become frayed?
A helpful tip to alleviating this resentment was shared by Ray (name has been changed to protect the privacy of the patient), a patient whose wife had a stroke. He said, “instead of brooding endlessly over how awful it was that I have to do things like emptying a bedpan every day for the rest of my life, I changed the focus of my thoughts to focusing on each step of what I was doing—‘OK, carry this to the toilet, now wash my hands.’ I started feeling calmer.”
He practices this mindfulness on more pleasant jobs as well—truly tasting each bite of a steak rather than gulping it down, smelling the freshly mowed grass when he walks outside instead of bolting down the street like a marathoner at the finish line.
If you still aren’t convinced that self-care is essential for those responsible for an ill person’s day-to-day welfare, consider this study documenting a higher mortality rate in those exhibiting caregiver stress.
Believe me now? Here are tips to help ease your burden:
• Join a Support Group for Caregivers: Here you can vent and cry to your heart’s content among people who totally get it! In addition, you can share resources and strategies.
• Realize No Man or Woman Is an Island: You cannot do this alone. Get help. If you can afford a nurse’s aide, wonderful. Family members and friends can also lighten your load by grocery shopping, cleaning, staying over on occasion, etc.
• Have a Social Life: You need to go out, and not to the pharmacy—to the movies, out to dinner, skiing, whatever. Being a caregiver is a major part of your identity, but there are other sides to your self-identity that you don’t want to (shouldn’t) lose.
• Don’t Neglect Your Own Health: This means physically and emotionally. If you
have physical ailments, see a doctor. If you have emotional issues, visit a therapist.
• Stop Pressuring Yourself to Be Perfect: Congratulate yourself for doing the best job you can instead of castigating yourself for not being the best caregiver the universe has ever seen! Not everyone would spend their time and energy caring for someone else, but you are. That’s enough. And even if your loved one isn’t expressing their appreciation for you, we guarantee they feel it.
Sherry Amatenstein, LCSW, is a NYC-based therapist and editor of the anthology How Does That Make You Feel? True Confessions From Both Sides of the Therapy Couch.