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From One Caregiver To Another: No One Knows What We Do

We're family caregivers, you and I. And we're invisible.

By Connie Baher

My mom is 105, and I've cared for her for 13 years. So if you've been caring for your older parent, spouse, partner, or friend for the long haul, you know what I'm talking about.

It's a lonely job, caregiving. And no one knows what we do — day after day looking after someone, coping with daunting and sometimes incomprehensible medical issues, hoping that we're doing the right thing as we take on the vast, evolving and endless responsibilities of being someone else's caregiver.

A caregiver with her mom making dinner. Next Avenue, family caregivers, caregiving
It's a lonely job, caregiving. And no one knows what we do — day after day looking after someone, hoping that we're doing the right thing.  |  Credit: Centre for Ageing Better

So let's talk about what we do.

Remember how it started? You offer to help with the groceries and drive them to their doctor's appointments. You bring them to your house on the weekends to watch a movie together and have a nice home-cooked meal. And then the job expands.

We wake in the middle of the night ... hoping that they're not having another one of those frustratingly enduring sleepless nights.

Now you're paying the bills and ordering the meds. And at your place, the guest room they used to stay in is currently empty. They can't climb your stairs anymore. So you find help at their home, and it may be time for them to move to a facility.

You spend hours looking for a good place, getting them a medical checkup and TB test, signing endless documents, doing your best to help your person make new friends, acclimate to the loss of their home and the smells and routines and privations of this new place to live.

The Ways We Help

So, we visit and listen to the problem list. We clean under the bed, find the scattered pills, and throw them away, and we quietly put a new package of Depends in their closet.

Next, we bring their clothes home to wash. It's indelicate. We have breached the line between parent and child, between spouses, partners, and friends — one should not be handling their undergarments.

We wake in the middle of the night, wondering if they are also awake, and hoping that they're not having another one of those frustratingly enduring sleepless nights.

We visit again, and as we leave their room (wondering if this may be our last glimpse of them alive), we take a parting look at them and the room itself. What simple thing should I do before I go — is there a box of Kleenex too far away to reach, a flip-top can of soda that should be opened?

Caregivers find inner strength and competence they would never have thought they had.

What can I do so they are not left imprisoned by their inabilities? How terrible it must be for them, we think. What must it be like to feel life ebbing away, to suffer the indignities as their once strong handwriting has dwindled to uneven scratch marks, as their hands and legs become mottled with bruises because they're taking blood thinners, and everything causes a bruise?

We can never honestly know what the world looks like through their failing eyes, the panic that grips them in the middle of the night, the bewilderment, the fear, the helplessness.

We're just the family, struggling along. We stumble, pick ourselves up, go at it again, and try to do better. It's hard — no question about it — to look beyond the daily challenges, but if we zoom out for a moment, there is something else to see.

Amy Abrams, a San Diego social worker who has counseled scores of long-haul family caregivers, speaks of caregiving as a transformative experience. "Caregivers find inner strength and competence they would never have thought they had," she says.

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The Gift of Time Together

There is the son who nursed his mother for four years, sleeping on the floor beside her bed. But then, he told me, "I discovered that weak as I thought I was, I have such a gift of adaptability, endurance, tolerance, patience."

If no one knows what we give — and give up — as caregivers, perhaps also no one knows what we get. We get the chance to live out a unique kind of love.

There is the daughter who moved cross country to care for her mother: "I realized how lucky I was to spend time with her. To revisit the home that I was desperate to leave in my teens. I got to appreciate her and all she had been through. It gave me a purpose. So even though it was a mixed blessing, this has been a gift."

And then there is the simple gift of slowing down and spending time together. Occasionally, I have a slow, quiet visit with my mom. The chores have been taken care of, there's enough medicine on hand, we've got the TV working again, and we talk — mostly, though, I listen.

Mom talks about her life, the school where she felt so lonely except for the art teacher who recognized her talent, how she gave up a serious pursuit of art to be a wife and mother, how she rebuilt her life after my father died, finally winning long-sought approval as an accomplished artist.

She is adding it all up and preparing to let go.

I have heard these stories before, but as I listen to Mom on this day, I also hear her determination to rise above each bodily insult; I hear the grit that keeps her going, and I am thankful for what she is teaching me. So, yes, I nod; you've led a good life. It is a gentle, sweet moment that we share.

If no one knows what we give — and give up — as caregivers, perhaps also no one knows what we get. We get the chance to live out a unique kind of love.

Therefore, at this season of giving thanks, and as the country marks National Family Caregivers Month, here is a celebration of what we do as family caregivers. With indebtedness to the famous verses from First Corinthians:

A Caregiver's Love

Love is making that first sweet offer of help.

Love is being there as things get worse.

Love is loss and sadness as he or she slips away from the person you once knew.

Love is pain as you feel your helplessness to stop their suffering.

Love is the soothing music that you put behind your words of care.

Love is brave enough to confront frailty and decline.

Love is the courage to show up daily, asking, "how are you today?"

Love is the strength to hear them out when they are depressed and life to them is dismal. When they have not slept, they have awakened in the middle of the night, fearing they are dying.

Love is the moments of joy when you encourage their memories of good times, their childhood, falling in love, and the times you listen to stories of their lives that will otherwise be lost.

Love is hanging in as they lose the ability to open a jar, walk on their own, or manipulate their hearing aids.

Love is staying engaged despite the toll.

Love is reaching out to their heart.

Love is warm and embracing.

Love is saying, I love you, even when they cannot say the same to you.

Love knows you cannot fix the illness or slow death's approach.

Love is recognizing their fears and anxieties, and the unknowing that they live with every day and night as they wait

Love is learning to live on the edge of eternity.

Love is silent tears that well up from nowhere.

Love is walking ahead, while sorrow is your shadow.

Love is holding their hand as you both tread unfamiliar territory.

And love is waiting beside them, imperfect as you are, as they take their final steps.

Connie Baher
Connie Baher Connie Baher is a writer and speaker on caregiving and re-imagining retirement. Her latest book is Family Caregivers: An Emotional Survival Guide. Published in USA Today, The New York Times Magazine, Forbes, and The Boston Globe, she is also the author of "The Case of the Kickass Retirement." She is a Harvard MBA, an entrepreneur, and a former tech executive. Read More
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