I had a great conversation the other day with a woman who takes care of her 90-year-old mother. Her mom continues to live independently, which is a nice way of saying that her daughter would prefer having her fingernails ripped out than having mom come stay with her. The daughter pays through the nose to have in-home caregivers pretty much around the clock.
Before you rush to judge and marvel at what money can buy, just know that this adult daughter feels the burden of caregiving as acutely as the rest of us. She feels the same sense of loss, the same guilt, the same obligation, the same sometimes-resentment. She too makes every decision in her mother’s life, deals with doctors, insurance, makes sure prescriptions are filled on time. She is the problem-solver who runs her mother’s life and makes sure everything goes smoothly. The big difference is that she gets to sleep in her own bed at night and can leave the diaper changes and food preparation to someone else.
I know another woman whose dad is in an assisted living home. He has Alzheimer’s and it pains her to visit him and not have him recognize her, his only daughter. Sometimes he thinks she is his long-dead wife and calls her by that name. His family home has been sold and most of his possessions sold or given away. He will never again live without supervision. His caregiving daughter sees her role as keeping the nursing home on its toes and she says it leaves her exhausted. “Who knows what they do when I leave?” she asks. She tries to get there a few times a week and if anything goes awry, she is the one who gets the call. She lives the closest physically, but is resentful that the burden falls to her and not her siblings.
A military wife who I know from an online caregivers’ support group is basically raising her child alone. Her husband is there, but not really. He returned from service in Afghanistan with both physical and emotional injuries. The idea of having a second child, as they had always planned, has been shelved ― indefinitely. She says that in a way, she already has two kids. She can’t leave her husband alone and sleeps in her child’s room with the door locked. He wakes up screaming in the middle of the night sometimes with terror-mares ― confused and disoriented and not remembering where he is. The VA doesn’t believe her, she says. “Why don’t they listen to caregivers? We are on the front lines and know what our loved ones need ― and what help we need.”
Then there is the woman who cares at home for her husband who had a stroke. She does everything for him 24/7 herself. She can’t imagine anyone else coming in and knowing what she knows intuitively. She can read his eyes and know when he’s hungry. She can just look at how he holds himself and know if he feels unwell. She only occasionally complains about her own exhaustion or how isolated she feels. Mostly what I hear from her is how she can’t envision her life without him.
My husband was diagnosed early this summer with kidney failure. He gets out-patient dialysis three times a week. Each session lasts four hours and by the time he gets home, he’s too tired to walk the dog to the corner. My long-time partner has become my patient. I work full-time and have two kids. Each week, he is able to do less and I take on more. I marvel at how abruptly our lives changed and how totally disruptive his illness has been to our family. I still have the unused plane tickets from a trip we were supposed to take last July. I look at a family photo that sits by our front door and no longer see us as that family.
These folks I’m telling you about? We are all caregivers, even though our situations are vastly different. What we have in common is this: Nobody really gets how hard this is, how unfair it feels, how isolating, life-altering, and painful it can be.
I was reminded the other day how sometimes it just takes a single small thing to shape a caregiver’s day.
“My mom no longer recognizes her dog,” one woman told me before she burst into tears. Or as another one posted about her father, “Half way to the park he says, ‘I gotta take a shit’ and promptly leans over and pukes in his shoes.” Having to clean up vomit or adult diapers sickens many caregivers ― as in literally sickens them to the point they themselves puke. She’s a puker. One male caregiver says he hates when a friend stops by and asks him, right in front of his wife, about the state of her diminishing memory and whether he expects to put her in a home soon. “Do they think she’s lost her hearing too?” he asks.
And then once in awhile you hear those magic words coming from a loved one’s mouth that make it not hurt so much for a little while: “Thank you.”
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