As the holiday season approaches, there are at least 34.2 million Americans providing care to a family member who is 50 or older.
If you’re one of them, there’s a strong possibility that you enjoy your membership in this group about as much as a holiday mall Santa enjoys the screaming babies. Sadly, family caregivers are a not-very-exclusive and rapidly growing club.
I speak from personal experience, since I was my late husband’s caregiver for almost two years.
And if you’re not part of the club—at least not yet—you may be wondering how to best help someone you know who is spending their holiday season looking after a seriously ill family member. Or at least what to say to them that won’t make them want to push you into oncoming sleigh traffic.
After all, unlike the mall Santas, caregiving burdens don’t end after a trip down the proverbial chimney.
Here are some of the things I heard around the holidays when I was caregiving that made me want to cover my ears—and a better idea for what to say instead.
“I don’t know how you do it.”
Neither do caregivers. It’s not like they chose this path, or even walked onto it with their eyes wide open.
Like my friend whose 67-year-old husband had a stroke. After a 10-day stay in the hospital’s intensive care unit, she was thrilled he was even still alive. But she’d be the first to admit that she didn’t have a clue what was in store for either of them.
What followed was a stint in rehab for him, and for her, many months of driving him to doctors, medical tests, outpatient physical therapy, occupational therapy, speech therapy and more other therapies than she can count on her fingers. She cooks special meals for him, oversees all aspects of his care, runs their home and pays the bills.
Until fairly recently, she could not leave him alone, and relied on an adult daughter to come over when she needed to go to the grocery store. When I saw her in October, she was exhausted and on the verge of tears.
She doesn’t know how she does it. None of us do. Family caregivers wing it.
What to say instead: “I made extra food so you’d have plenty of leftovers to take home.” Or, “How about I come over and bring dinner and a good bottle of wine?” Bonus points if you called ahead of time and asked about dietary restrictions and preferences.
“Have you tried x, y and z?”
There was a point in my caregiving life when “helpful” suggestions made with good intentions would have set me off faster than a holiday sparkler in the wrong hands.
Now, I realize that most of these suggestions were born from a lack of awareness, sometimes about how our health-care system works, and/or about what I had already researched, knew or done.
That said, it’s not a caregiver’s job to educate you about why Medicare doesn’t pay for extended nursing home stays, or why insurance won’t pay for transportation for your dialysis patient and he can’t go in an Uber. Instead, why not assume that the caregiver has already barked up most trees and tried to make those options work?
And above all, don’t tell the caregiver that she must talk to your third cousin’s neighbor whose husband “had the same thing.” No two situations are ever exactly alike. Plus, no family caregiver has time for that.
What to say instead: “I can’t imagine what you and your family are going through, but if I can help in any way I hope you will let me.” Sometimes, the best way to help is to just listen—not try to “fix” it, because in all likelihood, you can’t.
“I texted/left you a message but you didn’t reply.”
When you reach out to a caregiver, she may not have the energy to respond. It’s nothing personal. This is why having a central funnel for updates, like a page on CaringBridge.com, are vital to a caregiver’s sanity. Don’t be the person who insists on getting the news first or delivered personally.
There also comes a point in the caregiving roller coaster where a trip to the emergency room becomes barely newsworthy. A spike in fever, loss of bowel control, falls or dizziness that lands your patient and you in the ER for eight hours or so? It’s all in a day’s caregiving work.
What to say instead: Nothing. I had one friend who lived near the hospital and graciously brought me takeout food whenever my hubby and I hit the ER. I generally made my first call to her.
When you do get in touch, keep in mind that not every caregiver wants to talk about caregiving all the time. Sometimes, we just want to go out and have fun and pretend that our lives are like normal people’s lives. Please let us.
“You have to take care of yourself too!”
Gee, why didn’t I think of that?! I remember when one acquaintance lectured me on health habits, demanding: “What good will you be to your husband if you aren’t well?”
I asked when she could come over and stay with my husband so I could go to the gym, and I was told there was a lot on her plate at the moment, but absolutely she would be happy to do that after the holidays. Uh-huh.
Caregivers are well aware that the stress of caregiving can kill. We’ve seen the study out of Stanford University that put caregivers’ mortality rate at 63% higher than that of non-caregivers—and also found 40% of Alzheimer’s caregivers died from stress-related disorders before their patients.
We’ve also seen our own blood pressure readings soar, our weights tip the scale and our nights become sleepless.
Say this instead: “What day next week can we get Joe to stay with Bob and we go take a hike?”
“I want to hear what’s going on with Mom.”
If you are a relative of the caregiver who takes care of your mutual parent, under no circumstances should you fly in from your far-away home and begin making demands of the boots-on-the-ground caregiver.
In most families, caregiving for an elderly parent falls to one of the adult children. It is generally—upward of 75%—a female and often the one who physically lives closest to the parent. In some cases, the elderly parent may move into the adult child’s home, or vice versa.
Personally, I think that all caregiving for aged parents should be spread equally among family members without exemptions. Frankly, it’s often too much for just one person to bear.
What to say instead: “How can I help?” Also acceptable: “What do you need me to do?”
If you can’t provide physical assistance because of distance, whip out your checkbook and buy your fair share of the caregiving misery. Caregiving comes with a cost. Missed work, missed life. Pay up if you can’t roll up your sleeves.
Interesting footnote on this one: In China, adult children are required by law to visit and care for their elderly parents.
“I got you a book on caregiving!”
In the throes of my caregiving experience, someone gifted me a book about caregiving. The book had a lot of inspirational sayings for caregivers and called what I was going through “a journey.”
What the gift-giver clearly didn’t realize: about the only respite I had at the time was to lose myself in a good mystery, preferably one with a surprise twist at the end.
Caregiving has no surprise endings. Eventually your loved one dies.
What you should gift instead: Help. Even if it inconveniences you. Don’t offer to provide meals and then ask when the caregiver can come and get them, or promise to walk their dogs and then say you got too busy. Ask for some recipes that everyone likes, and deliver them. Show up at 7am with a leash.
Other gifts that make a big difference: a meal train, an offer to get their car oil changed (mine went unchanged for almost two years!), or an offer to pick up their kids, or give homework help on the big Mommy projects.
And if all else fails, how about just wishing them a “happy holiday?”