Especially
during the holidays, you might just want to zip it
by Ann Brenoff | June 8, 2019
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.
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.
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.
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.
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.
We’ve
seen our own blood pressure readings soar, our weights tip the scale and our
nights become sleepless.
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?”
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