There are 65 million family caregivers in America and although we’re devoted to our chronically or critically ill family members and would move mountains on their behalf, many of us harbor a guilty little secret: We fantasize about escaping into the car and driving away.
Why? For one reason, illness can change the personality and/or social skills of our loved ones, often dramatically, and we have to bear the brunt of their delusions, outbursts and just-plain-odd behaviors.
I wasn’t a caregiver to my father — I was only 6 when he died of brain cancer — but even my little-girl mind figured out that as his illness progressed he was no longer the same man who came home from work with a pint of Breyer’s vanilla ice cream just for me. One night, he crouched down on the floor to play with me, had a seizure, and fell on top of me in a spastic heap, rendering him Creepy Daddy instead of Nice Daddy. I was much too young to understand that it was cancer that had caused the change in him.
Today, my husband of 20 years suffers from severe Crohn’s disease and the stunning turnabouts in his personality nearly derailed our marriage.
When I met Michael, he was gentle, laid-back and respectful — not to mention extremely handsome. Then came his flare-ups, which necessitated high doses of steroids. Suddenly, he wasn’t so handsome; he was bloated and moonfaced. And he wasn’t so gentle; he was irascible. He came to be depressed, sullen and unreachable.
Unexpected Anger and Chemical Rage
One night we were packing for a cross-country move. He was not only taking the steroid prednisone for his Crohn’s but testosterone as well. Throw in his cocktail of Mount Gay Rum and tonic and he became a walking nightmare, prone to angry explosions that seemingly came from nowhere.
“The kitchen stuff goes in this pile,” I said at one point, pointing to the boxes full of pots and pans.
“Who put you in charge?” he demanded, his voice raised, his complexion flushed. “This was all your idea and I’m not moving anywhere!”
I launched into a defense of myself, pointed out that the moving company was due the very next day and suggested that if he didn’t want to uproot himself he could have mentioned it a tad earlier.
Big mistake. You can’t reason with someone who’s incapable of reason. If only I’d known that then.
At one point while I was talking, Michael really lost it. His eyes bugged out, his cheeks inflated like a cartoon character and he punched the wall. As he carried on like a child having a tantrum, it was all so bizarre that all I could do was to step back and observe the insanity. I hated my husband the whack job; I wanted my husband the sweetheart back.
Eventually Michael’s doctors eliminated two of the three offending chemicals in his system — the testosterone and the rum — and despite the continued presence of the steroids, he has been more even-tempered ever since. We’re feeling more hopeful about the future and each other.
What’s Really Going On
As caregivers, it’s our job to monitor the medications prescribed for our loved ones, to ensure that the meds aren’t making an already tricky situation even worse. But all too often it’s the illness itself that’s the villain — and we can’t make it go away.
Many of the caregivers I interviewed for my book, You’d Better Not Die or I’ll Kill You, have witnessed Jekyll-and-Hyde transformations similar to my husband’s. Actress Linda Dano shared that her father’s Alzheimer’s provoked an incident on a plane during which he clobbered Linda’s husband and ended up being taken to a hospital psychiatric ward. Public relations consultant John Goodman confided that his wife, who suffered from Cushing’s syndrome, tried to bite her nurses and doctors when she was in the hospital. Interior designer Toni Sherman reported that when her mother lapsed into dementia after a head injury, she accused Toni of having an affair with her stepfather.
“When it gets to the level of abuse,” says Suzanne Mintz, co-founder of the National Family Caregivers Association, “you’ve got a decision to make: Are you going to put up with this? Can you put up with this? You are allowed to say no.”
Mintz is right. My husband’s behavior under the influence of that medication combo really rattled me. I don’t think I could have stayed in the marriage if it had continued. Mintz emphasizes that the dark thoughts we all may have — like wishing we could run away — are perfectly normal and that we shouldn’t feel ashamed. “They don’t necessarily mean you want the person to leave the premises,” she says. “It’s the disease you want to go away.”
The key is to acknowledge those feelings, resign ourselves to getting fed up with the whole mess every now and then and confide in those people who won’t look at you as if you’re a monster when you vent. If you can articulate the dark thoughts to somebody else with a sympathetic ear — actually say them, out loud, to a friend, therapist, support group member, even the guy standing next to you at the checkout counter — you’ll feel better. You really will.