As November is National Caregivers Month, it seems appropriate to honor those who stand by us during life's most challenging moments.
Through my practice as a psychotherapist, and my role as a caregiver support group leader, I've met many people who described an experience that I've only recently been able to name. This experience, which I witnessed first-hand when my wife took on the caregiver role during my cancer treatment, has to do with two essential life forces operating at the same time.
The word that came to mind as I watched my wife shift into caregiver mode was "exhaustlessness" — being both fatigued and restless at the same time. I realize now that this is what I see on the faces of the caregivers who come to me for professional guidance. It is the look that says, “There’s so much to do and so little time to do it that the only thing I can do is keep moving.”
The physical manifestation is like taking a sleeping pill and an energy drink at the same time. One is always "on-call" and those cherished moments of rest seek to replenish physical, mental, emotional and spiritual energies.
Exhaustlessness is the perfect stress storm — the collision of two powerful systems whose combined impact can feel like an emotional hurricane. Under different circumstances, facing this flood of circumstances would leave one depleted and despondent. Paradoxically, exhaustlessness becomes the very fuel that energizes the caregiver. It provides the wherewithal to sit through countless appointments, manage multiple priorities like a circus juggler and fend off sleep as one sits bedside, ever watchful of a loved one’s every move, despite eyes that are heavy as the heart.
The reason that exhaustlessness does not come with the Surgeon General’s warning of “dangerous to your health" is, I believe, due to it arising out of a movement of profound love. While caring for others runs the risk of burnout when the awareness of personal limits is ignored, heart-centered exhaustlessness provides a return on the investment. Through the act of selfless compassion, the illusion of separation dissolves: The giver and receiver are one and one gets what one gives. This is why is can be so hard to convince caregivers to slow down, and why they often look sideways at anyone who tells them that they have to take care of themselves first. At a very deep level, the level where we’re all connected, they are taking care of themselves as they move reflexively toward the needs of a loved one who is suffering. The well that feeds this energy is unlimited, which is why many caregivers seem to perform miracles in their acts of service.
Like many of those who’ve faced the cancer challenge with a loved one as their caregiver, I’ve often thought that my wife’s role was even more difficult than mine. I had a team of professionals looking after me, the latest medications to manage side effects and the prayers and healing energies of extended family members, friends and colleagues. My wife, on the other hand, was often flying solo, without a treatment plan, pills to manage the ups and downs, or someone to take the next shift when her patient (yours truly) was in a foul mood. What she did have, however, was a love that soothed the radiation burns, countered the chemo-induced fatigue, calmed the steroid-fueled rants and even, without any sense of falseness, verbalized, “You really look good without hair.”
Given my personal experience, I’m no longer surprised that many of the caregivers I see are not looking for permission to stop, but confirmation that it’s OK to continue. Increasingly, I find myself helping them see the forces at work within themselves and move in accord with their inner wisdom. Finally, I ask that they allow trusted others to shoulder some of the burdens that come with caregiving and assure them that, while the experience of exhaustlessness will pass, the love remains forever.
Dear Cure: About "caregiver refueling"....I became a caregiver for my wife who had a stroke in December 2010 after retiring in October 2010. I retired in 2009. Although she is not totally disabled, she still needs constant supervision. In June 2014, I was diagnosed with stage 2b pancreatic cancer. Here we were...I couldn't take care of her and she couldn't take care of me. In order to get through the initial stages of therapy, I had to put my wife in assisted living and after 3 months got her released. Since then, I have been a "dual caregiver" through surgery, chemo, radiation and chemo-radiation. I am a caregiver for ME and a caregiver for HER. Frankly, I'm suffering burn out taking care of both of us. Our kids can't help because they have their own lives and families. I'm not willing to put her in assisted living or a nursing home...........we are only 69. Friends HAVE NOT STEPPED UP, because they don't know what to say......in fact, most of our friends have abandoned us for their retirement cruises, winters in Arizona, bowling, bridge, and other activities that we are not able to do.
We've tried to make the best of it, but it's very difficult. Any advise?
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