‘Keeping up appearances,’ the caregiver’s difficult, daily desire
I have a friend who told me he always tries to answer a different question when someone asks him, “How is your wife doing?” As quickly as possible he moves to “Here’s how I’m doing” because any substantive answer to the first question will be either demeaning to the patient, or complicated, or sad. And who wants to delve into bad news in a supermarket aisle or church vestibule?
Curious about the bad
Who wants to describe symptoms like these about someone they love?
• Maybe the patient goes in and out of spells when she no longer recognizes her husband.
• Maybe the patient resists bathing and the caregiver must hire an aide simply to get him in the shower.
• Maybe she has become irritable or argumentative.
• Maybe she wandered down the street and walked into a neighbor’s house that looks much like hers.
• Maybe he asks repeatedly to go home and can be satisfied only by taking a ride around the block and then ushered back into the house he just left.
• Maybe she breaks into tears at a baby and mother in a TV commercial but hears the news of a friend’s death with disturbing nonchalance.
And as I list these possibilities, let me hasten to say, “No, not all of these things have happened at my house.” But all are real-life examples from Alzheimer’s caregivers. And the fact that some readers instinctively want to know if I’ve just described my wife’s condition points up one problem with “How is she doing?”
The fact is that most of us—at some time or at some level, whether we realize it or not—gravitate toward bad news. We may be disappointed if we attend a NASCAR race and don’t see a wreck. We can’t help but look for bodies beside the road when we pass a smashed car guarded by police cars and an ambulance. Fires and tornadoes and wars and death headline the news. The public feeds on scandal, unsavory secrets, and other people’s misfortune. The pursuit of the underbelly pays the salary of more media personnel than we can count, so let’s face it: Bad news sells.
Afraid of the bad
Part of the reason disaster attracts our attention is that it helps us feel better about the chaos in our own lives. Yeah, I have a leaky basement, but my house didn’t burn down. Yeah, my kid needs his tonsils out, but thank God he doesn’t have cancer. Yes, my mother is in a nursing home, but of course she still knows my name.
We’re drawn to the tragedy in another’s life because we fear it in our own.
But I don’t want this to sound harsher than I mean it. I know many ask the question out of honest concern—for the patient and for the caregiver. But this leads to another conundrum for some. “I don’t know what to say when a friend asks how my wife is doing,” one caregiver said. (The disease in his household isn’t Alzheimer’s, but the syndrome is the same.) “They want to hear that she’s doing better, but usually she’s not. I feel like I’m letting them down to tell the unvarnished truth.”
And so we go to great lengths to keep things looking as normal as possible. When my wife quit keeping her hair perfectly styled as I had seen it for more than 50 years, I started taking her to the beauty shop every week. When she put together unfortunate clothing ensembles, I started helping her pick out her outfits before we saw friends. When she stopped wearing jewelry, I reminded her of some of her favorite necklaces and earrings. It’s been very important to me for her to look pretty in public. Is this for her sake—or for mine? I want to say both, but I realize my own pride is the larger portion of that equation.
This is why I was angry along with another caregiver when her friend told her daughter, “My, your dad has really gone downhill, hasn’t he?” It had been two years since they’d seen him, and he has Alzheimer’s. What did they expect?
Likewise, I bristled when someone asked me, “Are you seeking home care for Evelyn?” The question reminded me that people are talking about us behind our back.
Another whispered, “I saw Evelyn, and I think she knew me,” Of course, she did. Was my friend expecting to see a muttering imbecile?
Hiding the bad
I remember back to the days when our children were young we and we took them out in public. We made sure their noses were wiped, their socks matched, and they wore bright, clean outfits. We were sensitive to every acquaintance’s reaction. We wanted to impress others with our children. Their appearance and performance were a reflection on us.
Maybe the problem was me. I soon learned not to apologize for my kids’ behavior, not to own their decisions even if I occasionally disagreed with them. (Thankfully, most often I didn’t.) But failing Alzheimer’s patients can’t learn to be responsible for their own choices.
So caregivers work—so hard—to make all the right choices for the patient they love. Most acquaintances and friends react with patience and grace when the disease shows itself in public. But when keeping up appearances fails, despite our best efforts, the result can be awkward for everybody.
Photos by why kei and Taylor Smith at Unsplash