I have been a caregiver to my husband for the past five months. I have to count the months on my fingers twice just to make sure. How is it possible for five months to feel like so much longer?
On May 29, my husband collapsed while walking our dogs down the street. He spent a month hospitalized while the doctors tried to figure out why his kidneys had abruptly stopped working. They still don’t know, but we do know this: He will need dialysis three times a week from now on if he wants to stay alive and nothing will ever again be the same in our lives.
His fall on May 29 was my inglorious initiation into the ranks of the nation’s 34 million unpaid family caregivers. We are the untrained, unskilled family members who are all that stands between our loved ones and a nursing home ― or worse, our loved ones and a grave. We do our best for our patients to have the fullest lives possible, often sacrificing huge chunks of our own lives in the process. But we do it.
We do it for many reasons: Love, guilt, obligation, fear about what would happen if we didn’t. I don’t judge. I especially don’t judge those who voice their frustrations about being a caregiver. Quite the opposite, I share their pain. I live it every day, just as they do. There are days when I am so torn between grief and anger that I can barely function and nights when sleep is as elusive as a day without a crisis. My life is a constant juggling act of my husband’s needs, a demanding full-time job and having to raise two kids alone.
My story is not unique. Family caregiving is a job I never expected to have and frankly, wouldn’t wish upon anyone. We live in a system where the caregiving responsibilities that once fell squarely in the realm of nurses and professionals are now thrust on unwitting spouses and adult children with absolutely no consideration of the impact on their well-being ― or even the extent of their ability to perform these tasks. As one family caregiver who helps her husband every night with in-home dialysis told me, “I’m terrified that I will do something wrong and kill him.” She also notes with some amusement that the dialysis center and doctors prefer to call her a “care partner.” “That,” she says, “would suggest someone else is here helping me ― which, trust me, isn’t the case.”
Nope. We fly solo. My “training” was a 30-minute session with a nurse practitioner, who showed me how to give injections, draw blood and what signs to look for in case my husband’s body started to shut down. We touched on how to dispose of “sharps” ― the needles I would be using. I stared incredulously. I can’t rip a bandage off without trepidation.
Now I test blood, give injections, clean open ports so killer bacteria doesn’t form and a few thousand other daily little things that I once would have deemed unfathomable. We family caregivers change catheters, empty colostomy bags, handle feeding tubes, change soiled bedding, bathe our patients, brush their teeth, assist them on the toilet, dispense medication, keep track of insurance bills (and argue for hours each day over claim denials), schedule medical appointments, provide transportation, and oversee them while they do their physical therapy and occupational therapy exercises. And then we do everything else that we were already doing in our lives before we became caregivers. And we do it for not so much as a nickel.
Caregivers are the nation’s unpaid work force and we are drowning. Not only don’t we get paid, we don’t even get reimbursed for what we spend out of pocket. The toll we pay grows higher for those who drop out of the work place in order to play nurse. They will be rewarded with a more difficult retirement ― less in Social Security benefits and a smaller 401(k). And depending on their situation, they may even lose their own health coverage.
Every one of us is an unsung hero in my book. And with the population bubble aging, those future unsung heroes will have their hands full unless we provide today’s caregivers some meaningful relief.