When people who need care say, “I don’t want to be a burden,” they mean it, and most caregivers respond, “You’re not a burden.” But what they don’t say is that caregiving is a burden. It’s a heavy burden, physically, mentally, and emotionally, especially when you are carrying the bulk of it for years and decades.
Caregiving is an enormous responsibility that comes with a long and hard to-do list on top of the to-do list of daily living. It’s not a burden because anyone did anything wrong or because of the person in your care. It’s a burden because caregiving duties pile up on top of pre-existing life stressors like work, paying bills, and fragile family relations. (If they weren’t fragile before, they might be now). Caregiving takes time when you are already stretched for time. After all, there are only twenty-four hours in a day, and some of them should be spent sleeping.
Fifteen years ago, after my husband’s brain injury, there were four people living in our household: two adults and two children. One adult had a severe traumatic brain injury and could not drive a car (or read the word car, or draw a car). The other two family members were young teenagers. So I was the caregiver and family driver. This was all well and good until the car broke down.
The day I had planned broke apart. I had planned to drive Hugh to rehab, run to the bank, buy groceries, stop by the pharmacy, return to rehab, get home in time for the kids to return from school, cook dinner and drive the kids to dance class. But this was not going to happen the way I had planned.
Insecurity set in. Did I remember to renew my AAA membership or is that another $100 down the drain for a tow? Who were the last three friends I called to help me? Rotating SOS calls can save friendships.
I kicked the car’s tire for its bad timing. This is not something I would have done in my former life as a mom, wife, and professional woman, but it’s as if an ill-tempered avatar had taken over my body, and I didn’t know what I’d be capable of if one more thing went wrong.
I remember what my mother used to say about the Kennedy family: “How can one family survive so much bad luck? It’s like a hex over them, a dark cloud….” And standing in my driveway, I realized that bad luck seems to attract more bad luck.
We get thrown down when trauma strikes, and we are paralyzed for a time. Then, when we get back up, things that needed to be done while we were paralyzed didn’t get done, so there’s a backlog, and there are a million new things to be done like look in the mailbox and listen to the dozens of phone messages clogging your phone. It turns out that one of those messages is from the phone company threatening to cut off your service because you missed paying a bill. While you scramble to iron that out, you’re put on hold once again, neglecting something else, and so forth and so on.
So, yes, caregiving is a burden. It’s a burden to both the caregiver and the caregivee.
It was a burden for me because I was pulled in so many directions at once while trying to keep my cool and function like a normal human being. And it was a burden for my husband who sometimes felt that all of the stress and every problem had been caused by him, even though he did nothing wrong—and to top it off, he was living with a neurotic, hyper-vigilant stranger he used to call his wife.
The truth is, all family members are both a source of joy and a burden at one time or another. That’s what family life is: the art of weaving webs of joy between strands of pain is what creates the intricate fabric of family love.
It’s not the people in our care who burden us; it’s our anger over circumstances; it’s our inability to detach from expectations; it’s our resistance to accepting the things we cannot change; it’s the feeling that we are being swirled down a drain and can’t stop the momentum; it’s watching our loved one suffer; it’s feeling guilty for wanting to escape the reality of our life; it’s the gaping hole of loss, the inability to find the words to speak about what hurts, and our own sense of how unfair all of this is that burdens us.
Yes, caregiving is a burden, but you dear, are not.
Six months later, you move the couch away from the end table to vacuum and find the phone bill that went missing. It had slid down off the table, and you smile an evil smile as you ram it into the shredder.