Thirty years of serving as a caregiver has taught me that, while individual circumstances may differ, every caregiver struggles with three major feelings: fear, obligation and guilt, or what I like to call, The Caregiver FOG. Just like a regular fog, The Caregiver FOG can also obfuscate our view and cause us to veer off the path of safety. Whether it’s indulging ourselves with the pain of things that haven’t even happened (fear), castigating ourselves for things we’ve “got to do” or should have done (obligation), or punishing ourselves for perceived or real failures (guilt), we caregivers can easily become lost in our own fog of conflicting feelings.
Guilt may be the caregiver’s worst enemy of all and can wrap a caregiver into all types of emotional pretzels. The kind of guilt that most caregivers struggle with comes from circumstances such as being able to walk while a loved one can’t, taking a shower easily when a loved one can’t, living without chronic pain while caring for someone wracked with it, or for parents who brought a child with special needs into the world. When caring for an aging and declining loved one, a lot of guilt about not being with them constantly and attending their every request torments a caregiver. Hoping for or taking a break from caregiving when the loved one doesn’t get a break from their illness or condition can also spark guilty feelings.
We caregivers begin nobly, but often crash and burn quickly. It’s just too much for one person. If we do enlist the help of others (either professionals or volunteers), we find that we can’t enjoy and rest in the help because we feel guilty that we’re not supervising and doing the work ourselves. Oftentimes, the help given won’t be in a way that we would do it or that our loved one demands, and we feel guilty that we’re shortchanging them. The list of things that pierce our hearts is simply too long and convoluted, and we caregivers must step back in order to keep perspective.
Recently, I reminded a caller to my radio show for caregivers about the importance of keeping perspective. The caller, whose mother was suffering with Alzheimer’s, unburdened her heart to me, and we could all hear the anguish in her voice.
“I find myself not wanting to visit my mother with Alzheimer’s because it’s harder and harder to watch. There’s a lot of guilt about my not wanting to be there every day, and I’m not sure how to handle it,” she confessed, but her deepest hurt was yet to be revealed. “On top of that,” she said, “when others ask me about her, I feel even more guilt as I try to explain why it’s been two days since I’ve seen her.”
“Is she safe at the facility where she lives,” I asked the caller.
“Yes.”
“Is she fed, warm, and well cared for?”
“Yes.”
“Does she recognize the passage of time?”
“No.”
“Can you be with her twenty-four hours per day, seven days a week?”
“Of course not.”
“Well then, how many breaks are you allowed—and who makes that determination?”
Silence.
After a moment, she continued, “When people ask me how Mom’s doing, and if I haven’t seen her in a day or so, I feel so guilty and don’t know what to say—and it all comes gushing out. Worse still, I beat myself up when their questions remind me that I didn’t see Mom today.”
Because of fear, obligation and guilt, we often put unreasonable demands upon ourselves to do what is beyond us. This woman, an only child, had already taken care of her aging father who passed away a few years earlier. She made appropriate provisions to care for mother, but somehow didn’t feel that she was doing enough.
I simply affirmed to the caller that she has done the best that she can with an impossible situation. “You have and are honoring your mother and father —just as we are instructed to in the Bible. If you feel you need to visit your mother only every other day, it’s fine. You’ve made arrangements to keep her safe and cared for. If it’s torture on your heart to see her every day in that state, how long can you sustain that torture? What good are you to her or anyone else if you lose hope, slide into despair and wear yourself down to a frazzle—just to satisfy some sort of self-imposed guilt?”
As I said these things, you could almost hear the stress melting away from her through the phone line.
For sincere but peripherally related inquirers, I offered the caller a stock response:
“My mother is loved, cared for and safe; thank you so much for asking.”
That’s enough to satisfy friends who kindly ask, but are not close to the situation. With that response, this heartbroken woman can also now affirm to herself that she has indeed provided for her mother to the best of her abilities. That is all we can do, while trusting God to handle the things beyond our control.
The FOG caregivers feel can be heavy in the valley of the shadow of death. It is indeed a lonely road, but we must remember that we are not alone.
“Do not fear, for I am with you; do not be dismayed, for I am your God. I will strengthen you, I will help you, yes, I will uphold you with My righteous right hand.” Isaiah 41:10
