Quick! Guess which of the following is the correct answer to the statement, “Caregiving can…”
A. Be an emotionally fulfilling responsibility
B. Be physically draining
C. Bring families closer
D. Strain financial resources
E. Kill you.
Answer: All of the above.
Depending on your circumstances and how you choose to label it—the act, job, responsibility or burden—caregiving for a loved one can transform your life in a positive or negative way. A long overdue spotlight is finally beginning to shine upon what is becoming an epidemic as we truly become a nation of loving, though tired, caregivers.
According to the National Alliance of Caregiving, an estimated 65.7 million individuals provide some kind of caregiving for their child, parent, spouse, other relative or friend. That’s nearly one-third of all households. That’s huge.
We’ve moved into an era when modern medicine has literally saved millions of lives once lost to injury and various diseases. We’ve evolved beyond a nightmarish time when less-than-perfect individuals were hidden away at home out of public view or shunted off to asylums because of deformities, deficiencies or delusions. We’re also simply living longer.
Do we dare question if the increased demands of caregiving are the price we pay for these miracles? We’ll leave those topics for someone else to debate.
In the last five years, I’ve interacted with hundreds of caregivers and their loved ones confronting catastrophic life challenges such as Alzheimer’s, strokes, brain injuries, brain tumors and brain cancer, and other conditions. Their voices, gestures, scribbled words, laughter and tears revealed everything from the extremes of great heartache to unconditional love.
Many of those whose bodies have been affected by disease and injury have shared with me their frustrations with their limitations and agonized over the “burden” they feel they have placed on family and friends. Those emotions are very real and intense, a seedling of what makes us human, the desire to be independent and capable of making our own decisions and caring for our basic needs. They often lament giving up their privacy and dignity when they can’t feed themselves or go to the bathroom alone.
Those are heartbreaking and humbling. Not one of them ever thought it could happen to them. Virtually all of us believe we are immune to such shattering events. That, too, is a very human trait, one that may actually protect us in a strange way from succumbing to incessant and irrational fears, and miss the beauty and experience of life itself.
The caregiving role may be one that is assumed gradually, such as witnessing the wrath of a long-term fatal disease such as Alzheimer’s. It’s such a hard concept to comprehend. How can an adult forget how to read or write…or the difference between night and day…or what the toilet is for, or that they’ve soiled themselves? How is that possible? We have a growing population of confused, angry and exhausted caregivers who cannot leave their loved ones unattended for even a minute because they may harm themselves or burn down the house. To watch someone you love slip away from you in this horrific way can be embarrassing, depressing and devastating.
Sometimes, caregivers must step in, often with little warning, after a serious injury or something like a stroke, the leading cause of adult disability in this country. They must first grasp what has happened, and second, try to figure out how they can best help. They’re also grieving the tragedy and fear losing this person. Many a caregiver has detailed the long periods of running only on pure and painful adrenaline for hours, days, weeks and months. Their own physical bodies suffer from poor nutrition, lack of exercise, excessive weight gain or loss, inadequate sleep and ignoring their own healthcare needs.
While love and devotion may be the foundation of many caregivers’ intentions and desire to care for loved ones hampered by physical challenges, guilt is a powerful motivator, along with the illusion that they alone must “save the day.” Many caregivers confided that they believed they were the only ones who could do the job “right,” that no one could take their place. That’s noble, but not realistic.
To care for yourself is not selfish. It’s a matter of survival at times. After all, if you become sick, who will care for your loved one?
A very dear friend of mine learned that lesson the hard way as she cared for her husband with Alzheimer’s. Her family helped her as much as possible, but she was stubborn and continued to do too much on her own.
Remember my quiz at the beginning? Her answer was “E.”
Caregiving killed my dear friend, Molly, last January. Her body wore out from the stress and physical demands of the man she adored, but who no longer knew her. Too late, Molly realized what she had done to herself by not seeking or accepting more help earlier. She told me to take care of myself and keep educating other caregivers on this most vital lesson—that they should not have to die before their loved ones.
Caregivers must set aside their pride or stubbornness at times to simply survive. Other family members and friends must set aside their shyness or discomfort and step in to help physically, emotionally or spiritually. There is no gift of time that is too small, and it will always be counted as among the most precious packages ever delivered.
In 2010, I became a caregiver for my father-in-law who has Alzheimer’s. I’ve had to make tough decisions along with the tears and heartache because I have to be there for him. Through my writing and speaking, I preach the prayer of compassion for one’s self so that we can become better caregivers and people as a whole. There is no greater fulfillment and love than caring for someone else.
I’ve made up my mind that I will survive caregiving with body, mind and soul intact. Or Molly will be very unhappy with me, and I’m not risking that. iBi