Really, your friends just mean to be helpful—but it’s astonishing just how clueless they can be. Below, a list of 5 things caregivers often hear—and some responses that just might work.
Oh my friend’s dad had that, and it was awful!
What you want to say: “I don't need you to tell me how bad this is.”
What you do say: “Oh, do me a favor, please. Find out what worked best for them to ease the pain.”
I can tell you're stressed...you've put on a little weight.
What you want to say: “I am stressed. What’s your excuse?”
What you do say. “Daddy and I share a bowl of ice cream every afternoon. It’s the highlight of our day.”
How long does he have left?
What you want to say: “Longer than our friendship.”
What you do say: “We are grateful for every moment.”
Wow, you look worn out!
What you want to say: “Since I am carrying the ball for all of us, I’ve had to give up sleeping.”
What you do say: “It’s true. I could really use some help. Could you take Mom to her PT appointment this week?”
Do you worry that you'll get it too?
What you want to say: “Just like social ineptness, Alzheimer's/cancer/Parkinson's isn't contagious.”
What you do say: “I take the best care of myself that I can, and I spend my time thinking about what I can do to help Mom.”
A guest post by a Cambridge Caregiver
There are circles of care giving that apply under all circumstances. First, there’s the nuclear core—parents to children, older siblings to younger ones, spouses to each other. Over time, or when something goes awry, a new circle emerges, one occupied by pinch-hit caregivers. This realm is often occupied by nearby sons and daughters-in-law, the closest grown daughter, or the adult sibling who lives in the same town.
Then there’s a second circle, made up of family members who, however well intentioned they might be, are simply too far away to help out—a plane ride away, a time zone beyond. They care, but they have jobs to attend to and people who need them where they are. They call now and then. They respond to group email updates with group cyber-hugs and gratefulness to all that are doing the hard work they can’t be there to do.
Somewhere between that inner and outer circle lies a care giving purgatory. It’s occupied by loved ones who are busy with their own lives and their own households, too far away to be the central caregiver, but too close to the situation to beg off. They would do more if they could. They make themselves available when they can, but it never seems often enough. They drop in, write checks, send cleaning supplies and bring fresh fruit, talk to doctors and neighbors. They lay awake at 4AM wondering how to make it better, knowing that it’s not really an option for them to swoop in and fix what needs fixing on an ongoing basis. Their friends tell them that they’re saints, that the relative in need is lucky to have them in their life.
But no matter how much they do, and no matter what people say, they wonder: Is what I’m doing enough? Should I be doing more? Where do I draw the line between my obligations to my life and livelihood, and the loved one who needs more help than I can give? How can I help from my home, when relocation isn’t an option—and truth be told, isn’t what I’d want, in any case? How can I accept that this purgatory is as good as it can be?
There never seems to be any good answers to these questions, especially not at 4AM. The solace that comes with knowing that you’re doing as much as you can is faint, at best. The sense that at some point, a shoe may drop and the situation will shift and that inner circle will fall away, leaving you closer to the core, is pervasive. A good night’s sleep seems not to be an option.
What to do? Keep doing what you can do. Listen, and listen some more. Muddle through, and know that sometimes muddling through is the best that can be expected. Then muddle through some more. While not as tidy or clear-cut as your regular approach to life might be, muddling through might just turn out to be the only method that works, under the circumstances.
Learning how to muddle through might not be a skill you were looking to master, but it’s definitely a skill worth acquiring. Being willing do the best you can when clarity can’t be provided, when nothing approaching perfection is an option, can make getting through the day—and sleeping through the night—a distinct possibility.
Boston’s Huntington Theater Company has just staged a remarkable production of Stephen Karam’s Sons of the Prophet. A man’s death leaves his two sons orphaned, and their uncle steps in to care for them. But the sons are 19 and 29, respectively, and clearly independent, while the uncle is sufficiently infirm that he can no longer climb stairs. Adding complexity, the elder brother is suffering from a mysterious illness—one that is starting to scare him.
Among other topics, the play dances around the issue of who is caring for whom. The older brother, who finds himself in a classic sandwich generation situation with a teen and an elder on his hands? The uncle, who moves in with the brothers, and tries to police what’s happening in second-story bedrooms he can’t access? The younger brother, to whom falls much of the practical caregiving for his uncle—and all the worry over his big brother’s health? Yes.
Ultimately, it becomes clear that, in fact, each of the main characters is caring for the other. And that that love, and outward-facing energy, is part of what keeps each moving forward through an emotionally turbulent time.
There are some powerful scenes and fine writing, which I would quote, if only I could find a copy of the script. But here’s the point:
Like it or not, we are all our brother’s keepers. It is core to our humanity. Irritating as it can be, for both caregivers and the care recipients, it is cause for celebration and gratitude.
This morning I made a dish I have made thousands of times—well tens of times, anyway, enough that I no longer need to look at the recipe. I opened the last ingredient…and found that instead of diced tomatoes I had purchased crushed tomatoes. Seems like a minor deal. But the first, tossed with olive oil, would result in a lovely roast vegetable dish, suitable hot or cold or folded into omelets for tomorrow’s breakfast. The other is sort of a puree that resists being tossed with anything. Bummer.
But then I reflected that this is just the sort of thing that constantly happens in real life...and even more frequently in the roller-coaster world of caregiving: You plan for one thing, but something completely different happens instead. Generally, there are two choices: totally bum out that things aren’t going as planned. Or figure out what fabulous thing to make out of the mess.
Fortunately for my family, I am a decent cook and my specialty is leftovers—transforming odds and ends into something fairly appetizing. But I readily admit that resilience and inventiveness don’t transfer into my daily life. Yet.
My 2011 New Year’s Resolution is going to be to embrace the adage, ”When life hands you lemons, make lemonade.” Or maybe a nice lemon pie, which I prefer. Or maybe I’ll just twist the peels into a martini—that’ll cheer everyone up.
There are a lot of clichés that deal with this topic. When one door closes, another opens. Every cloud has a silver lining. Yadda, yadda, yadda. But the reason the clichés exist is because they are true.
Here are five scenarios I might face this year—and the spin I plan to give them:
- If my business doesn't work, I will see what other doors the process may have opened—and reflect on all the things I have learned over the past 12 months.
- If I can’t go dancing any more, I’ll take up the hula hoop. I was a state fair hula-hoop champion once; why not again?
- If we need to move, we’ll get something all on one level and I can quit hauling suitcases up 5 flights of stairs.
- If my mother and I can’t take walks, I’ll sit on the bed and finally put together those photo albums. The snap shots should spark lots of conversations.
- And if I have to mourn, I’ll try to use all that energy to fuel something truly wonderful.
Stay tuned to see how I do. Meanwhile, remember that if the ingredients life hands you aren’t quite what you expected, you can still produce something wonderful—you just have to adjust your approach. What’s your plan?
It’s Thanksgiving. Clearly the topic de jour is how grateful we all should be for what we have. How life is made of little moments. How fortunate we are to be able to enjoy sunsets and good books and fudge sauce. And most of all, how having each other—someone to love, someone who loves you—is all that really counts. All of that is true.
What interests me, though, is that, scientifically speaking, having these things isn’t the important part. It’s the conscious act of being thankful for them—something that should continue long after the turkey disappears.
Just Tuesday, the Wall Street Journal
had a big article on the way gratitude makes you healthier.
The author notes,
“Adults who frequently feel grateful have more energy, more optimism, more social connections and more happiness than those who do not…they are also less likely to be depressed, envious, greedy or alcoholics. They earn more money, sleep more soundly, exercise more regularly and have greater resistance to viral infections.”
This isn’t your mother nagging you to say thank you to the nice lady. These are serious researchers with scientific data that an attitude of gratitude can stave off everything from depression to the flu. Don’t take my word for it; read it
While just saying “thank you” seems like a pretty pleasant path to self-improvement., there is further good news for caregivers. An analogous article
on EverydayHealth.com offers a list of ways to boost the gratitude factor in your life. A prime method: Doing something for someone else. So, congratulations! You are well on your way to greater mental and physical health. Other tips include reframing negatives (that whole finding the silver lining thing) and being truly aware of the things for which you are thankful.
Right now, I’m thankful that there are sweet potatoes in the oven—and that there is a cultural expectation that I will eat a second helping. When I do, I’ll be sure to say a great big “thank you.” And mean it.
Recently I read a very insightful article by Paula Spencer on Caring.com. The article addresses the need for caregivers to find a confidante, a point extremely well-taken. Often the person needing care had once filled that role. Spencer writes about how sad she was when her grandmother’s increasing deafness brought an end to their weekly phone calls. Yet, Spencer notes, in person her grandmother’s hugs felt exactly the same.
And that is what I want to explore a bit.
Spencer states: Reap what you can still reap from the person in your care. Yes, things change. Vision dims. Hearing dwindles. Weekly hikes become ambles become shuffles between bed and sofa. Maybe you’ll never win the rumba championship together again. But if you look hard, you’ll find that the person you love is still there—and maybe even in ways you had never before discovered. So don’t waste precious time mourning loss; look for life. Focus on what remains—like those hugs—and push ahead. Build new connections, new memories and new ways of being together. Seek joy.
It is hard for me to believe that my father died eight years ago. He was my hero. To the world, he was elegance personified, as handsome at 95 as he was at 19, a dashing dresser, and incomparable on the dance floor. To his colleagues he was fearless, clear-thinking and deeply competitive. To his friends and allies he was fiercely loyal—and honest to a fault. While losing was never an option, you always found a path to victory that you could be proud of.
Though I miss him terribly, I believe that he is an inextricable part of me, and thus, in some sense, omnipresent in my life. Today, as we celebrate All Soul's Day, I want to share a poem that beautifully expresses the ways in which those whom we love are always with us.
Death is Nothing at All
Henry Scott-Holland, Canon of St Paul's Cathedral
Death is nothing at all
I have only slipped away into the next room
I am I and you are you
Whatever we were to each other
That we are still
Call me by my old familiar name
Speak to me in the easy way you always used
Put no difference into your tone
Wear no forced air of solemnity or sorrow
Laugh as we always laughed
At the little jokes we always enjoyed together
Play, smile, think of me, pray for me
Let my name be ever the household word that it always was
Let it be spoken without effort
Without the ghost of a shadow in it
Life means all that it ever meant
It is the same as it ever was
There is absolute unbroken continuity
What is death but a negligible accident?
Why should I be out of mind
Because I am out of sight?
I am waiting for you for an interval
Somewhere very near
Just around the corner
All is well.
Nothing is past; nothing is lost
One brief moment and all will be as it was before
How we shall laugh at the trouble of parting when we meet again!
A colleague recently recounted her experience sitting with a friend whose husband was dying. Her friend was, understandably, devastated. She was weeping, distraught, and terrified to take a nap—much less a shower. But my colleague sensed something deeper: Her friend was also scared to take a breath, have a meal, enjoy a moment of peace, for fear of seeming insufficiently grief-stricken, of being somehow inappropriate.
It is an easy trap to fall into.
We greet serious matters with proper gravity. We want our loved ones to know how desperately they will be missed. We want the world to know how badly we hurt. We want to show respect. Yet in the process we can miss opportunities too.
We can literally make ourselves sick with grief. Knowing life as we know it will soon be over, we can shut ourselves in and ensure life in any form is over. We can simply give up.
Or we can choose life. And that includes choosing life and affirmation at the point of death.
My colleague knows something about this; she lost a child to cancer in a year-long battle. And as she sat with her friend on that evening last week, her counsel was simple: Share this time with your husband. Let him know you will be all right after he dies—and that his memory will bring you joy, and warmth and serenity. Choose affirmation.
Today’s medical advances can mean a terminal illness progresses over months and years. That can be cause for optimism, for finding options, seizing opportunities, trying new treatments—and even for taking a no-holds-barred approach to life.
Yet in some families, that elongated decline may lead to a different response, one in which room for hope leaves room for denial.
The person isn’t dead, after all. The prognosis isn’t absolute. “It could be a year” means it could be something besides a year—say ten? So why even think about it at all. Better to believe that all will be well than to wander around with long faces.
Yes, that’s true. But such denial can, in fact, leave the person you love without the support they need at a time when they are most vulnerable.
That lack of support can have practical consequences—after all, the patient and their nuclear family still need concrete help, from meals to errand-running to transportation to the endless medical appointments that take over daily life. But perhaps far more serious, that lack of emotional support can force the patient to draw on reserves of inner-strength that could be essential to fighting the disease.
Ultimately, the ostrich approach robs both parties—the patient and the people who love them—of a chance to deepen their relationship, to find a place of peace and joy together, while it is still possible. And that loss is the real tragedy.
To learn more about the reasons families react differently—and how they can become more resilient—visit: http://tinyurl.com/3yyv9rh