How to Love Being a Caregiver: A Valentine

“Everybody at some point really hates being a caregiver.” That’s what Amy Abrams, former director of education for Alzheimer’s San Diego, told me, and, believe me, it resonated. That may sound like a perverse way to start a Valentine for caregivers, but stick with me and we’ll get around to the candy hearts.

“People talk a lot about romantic love, but this is about a difficult, demanding, gritty, sometimes one-way kind of love, and that rare chance to live out your love for someone.”

One sunny day in Carlsbad, California, I was driving to visit my mother (I was her caregiver for 13 years). The seatbelt on the passenger seat was strapped around a 12-pack of Ensure. My giant tote bag was filled with Kleenex and paper toweling, a new pair of reading glasses and assorted cleaning materials for the tray on Mom’s walker. A voice from the car radio broke into my thoughts. A clergyman on some interview show was saying, “Caregiving is a blessing.”

“Really?” I thought. “Really?” Watching someone slowly being consumed by frailty, sliding into cognitive decline — no, for me, caregiving was anything but a blessing. Cynically I figured he was just testing out some theme for next Sunday’s sermon.

Caregiving is stealthy — for me it had sneaked up from a simple offer to help with the groceries until, as my mom’s needs expanded, it had just about engulfed me. Maybe you know the story. I was struggling and stressed out, angry and then guilty for feeling angry.

I began to talk to other caregivers, started an informal support group where we swapped stories and tried to help one another. I sought out hospice workers, palliative care doctors, psychologists and social workers, looking for answers.

And then there was this fateful phone call. I was talking with Carmel Murphy-Kotyan, a Caregiver Consultant and director of CMK Home Care in Massachusetts. “I’m losing my life,” I almost screamed over the phone. She paused and then said simply, “You’re a caregiver. This is your life.”

That moment changed everything. Man, she had nailed it. I knew I was resisting being a caregiver. I was trying to stuff it into a corner of my life and it wouldn’t stay there.

So I began to lean in, even when I felt depleted and overwhelmed. Maybe this is shocking — and I suspect the minister would be taken aback — but as a caregiver, you can outrun your love. Sure, it begins with a loving impulse, but then the ever-changing demands, day after day and month after month, can leave you numb with exhaustion.

Let’s face it, maybe your person is difficult, maybe you never really had a close relationship with them in the first place. Maybe your person’s world has shrunk to be mostly about them, their pain, their fears, their needs. Perhaps they ask about you but don’t really listen to your answer. Maybe they are depressed, and nothing you try will make them smile.

And there is, beneath it all, the grinding feeling of inadequacy because, ultimately, you cannot cure their sickness and you know how this journey will end.

But you keep on keeping on. You’ve run right through all the love you had and are driving on empty, perhaps out of obligation, perhaps because you’re the only one in the family who lives close to them, perhaps because you vowed to care for your person in sickness and in health, till death.