POST 50
08/04/2016 07:01 am ET Updated Aug 09, 2016

When Caregivers Are Honest, It Makes Folks VERY Uncomfortable

Caregiving sucks, so quit trying to sugarcoat it.
The author and her husband on a vacation before his illness.
Courtesy of Ann Brenoff
The author and her husband on a vacation before his illness.

A weakened version of the man I married was discharged a few weeks ago after a month in the hospital. My husband now gets dialysis a couple of times a week as an out-patient, sleeps a lot in between treatments, and in general feels pretty lousy served up with a regular side order of grumpy. I’m told that’s par for the course.

In addition to being everything I was before ― wife, mother, full-time working woman, family manager ― I am now also his chief caregiver. I shop, cook and clean up after him. I make sure he takes his medicines when he’s supposed to. I argue with doctors, visiting nurses, and insurance people on his behalf. He runs out of nothing, because I’m responsible for refilling everything. When he needs to go somewhere, I get him there. When he needs something done, I do it. There is no task too unpleasant, too distasteful, too “I-can’t-believe-I’m-doing- this.” I just do it, all of it, and I try hard not to think too much about it.

It’s a role I didn’t ask for, don’t want, and frankly, kind of suck at. But being a reluctant caregiver is my issue, not yours. Your issue is that when caregivers talk frankly about their feelings, it makes you uncomfortable and then stupid things come out of your mouth. Want an example? When I say caregiving sucks, you tell me “no, you don’t really mean that.” But yes, yes I really do.

I’ve come to see this practice as caregiver-shaming and would like it if you’d please stop.

To start, you can stop telling me how I should be feeling. Stop telling me I shouldn’t be angry. Stop saying there is something rewarding about what I’m doing because trust me, there isn’t. And also, for the love of all things mighty and good: Please stop telling me how lucky I am. As one military caregiving wife I know says, “Sure I’m glad my husband came home alive. But he’s in pieces, not whole. I don’t get how people somehow think this makes me ‘lucky?’” 

If you could stop judging us for a minute, you might realize that every honest caregiver has moments of sheer rage and resentment. One woman I know goes down to her basement and screams into a pillow so her kids don’t hear. Me? I prefer the shower, the one in the bathroom where the door still locks. Why can’t a caregiver just say, “I really can’t take this much more” without someone telling her she is wrong?

Caregivers feel sad, lost, and sometimes angry ― very angry. Since I began writing about my caregiving experience, I have heard from caregivers who say they sometimes wish their patient were dead. “Then I could just have a normal life,” said one woman who’s been caregiving for almost three years without a day off. Another woman I met cared for her own mother for seven years and now cares for a sick husband. She says, “It’s like one died and I had an opening.” Then she adds wryly, “I just can’t catch a break. When is it my turn to live again?”

Sometimes, we caregivers just need to let it all hang out. One woman told me how, when her husband was in the ICU hooked up to machines from every orifice, she blurted out “You did this to yourself.” Sounds harsh, right? OK, that was me. Blaming the patient is a reoccurring theme for which caregivers are shamed. “Oh you don’t mean that!” we are told. Actually, we do. At least in that minute in time, yes we really really do. As I asked my own sweet husband, “All those Cokes and Hershey bars? Did they taste good? Because now we are all living with the consequences of your eating them.” 

A caregiver friend ― half my age and with twice my smarts ― says that what she longs for most is a single day in which all the decisions don’t fall to her. “It would be a mini-vacation,” she said. She would also like people to stop telling her what a great job she’s doing. “Good job” Good job!” she mimics. “It’s like I’m in second grade and just got all my spelling words right.”

And then she gets serious. “There are days when I wish my husband would just try harder. Sometimes it’s like I’m the only one vested in his care. Why can’t he take the meds like the doctor tells him to? Why is every doctor ‘an idiot’?”

Yep ― sometimes our patients don’t put their own oars in the water and we are out there paddling alone ― paddling alone for them. Invariably, we think, “If he doesn’t care, why should I?” The front door is all that stands between us and freedom and don’t think we don’t eye it.

Also, please don’t suggest that we need therapy to learn how to cope better. We aren’t what’s wrong and in need of fixing. What’s wrong is that even though family caregivers save the country $500 billion a year by providing our services for free, nobody is out there trying to make our lives a little easier. Where are the tax credits, the expenses reimbursement, the paid family leave so that while I’m spending the night not sleeping in a chair next to his hospital bed I don’t have to worry about going to work the next day?

But instead of solid counsel, all we get is your view of how you think we should be feeling.

Sadly, caregiver-shaming has forced some of us to go underground. There are secret groups on Facebook where caregivers meet during the insomniac hours to share and vent what we feel freely. We even have “Throat Punch Thursdays” ― where we rage on the doctors who don’t call us back, the pharmacies that can’t figure out how to submit a bill to insurance, the morass that is Medicare and Medicaid and VA benefits that no one understands. And yes, sometimes we throat punch our patients. “I just wanted to go to the supermarket alone and walk up and down every aisle ― alone. But he wanted to come along. Dammit.” Sometimes, we could use a little care ourselves and we find it best among strangers who don’t shame us for being open with our feelings.

In the judgment-free zone of Facebook ― bet you didn’t know such a thing existed ― we get to say things like: “We don’t feel honored. We don’t feel lucky. We can’t even love the same.” Roll those words around your tongue like a fine wine and then let me know how you think we should feel.

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