The dishes are done, now what?

Dirty dishes on the counterBy PAUL HILE

My wife has been feeling good lately—healthy.

I write that with a smile on my face—then quickly knock on wood.

If you read the first article I ever wrote for WeAreCaregivers, you know that there haven’t been many times my wife has felt like this. Mainly, since her diagnosis with a rare autoimmune disorder in 2009, she’s wrestled with fatigue, exhaustion, pain and frustration.

Of course, there have been times when she’s felt better, when she hasn’t been as tired or sore, when her rash hasn’t been as predominant—but those periods haven’t lasted long, and they weren’t like this.

How is she feeling this summer?

She has been doing research in a university city in another part of our state, while I hold down the fort at our home. She’s on her own, taking care of everything. And that has me thinking about the roller-coaster that is caregiving. I am well aware that for some people caregiving isn’t a roller-coaster. There are no “up” periods. There isn’t any chance that the person they care for is going to start feeling better. But for many caregivers—if patients enjoy remission, their roles change and they’re no longer needed as they once were.

Maybe that doesn’t sound like a big deal, but when your identity has become so wrapped up in providing love and care in one way, it can be difficult to accept that you’re no longer needed in that way anymore.

For me, it began with the dishes.

Dishes have just been one of my things. I started doing the dishes when each plate felt like a 10-pound brick in my wife’s hands. Since then, I’ve become one of the fastest, most thorough dishwashers east of the Mississippi. But when my wife started feeling better, she’d kindly do the dishes and for whatever reason it bothered me. It bothered me so much I’d make a point to get to the sink first after a meal.

Why? Because without the dishes—without providing care in this way, and other ways—the dynamic of our relationship changes however slightly.

Don’t misunderstand. I love my wife; I’m thrilled she is feeling well; I share her pride in the work she’s doing, now.

She’s conducting important research this summer with a scientist she profoundly respects. She’s living on her own. She doesn’t need me to do the dishes. And, the dynamic of our relationship has changed. Like a lot of caregivers whose intense routines suddenly evaporate—I’m disoriented. As happy and relieved as I am that she’s feeling better, I still feel awkward when she does something I would normally do; when I talk with her on the phone and she’s just finished cleaning her apartment, prepared dinner, handled some bills and caught up with our friends over the phone.

So here’s my question as a young, inexperienced caregiver: How do you ride this roller-coaster?

I’m looking for your guidance here, so don’t let me down! How do you transition after those intense periods of providing care, from doing everything (or practically everything)? How do you let go of those things? How do you still feel needed?

Please, leave a comment, share this column on Facebook or email me at WeAreCaregivers@gmail.com

I could certainly use the help.

Meanwhile … I think I’ll go wash the dishes.

PAUL HILE is a writer, editor and social-media expert with ReadTheSpirit online magazine. His columns—written from the perspective of millions of younger caregivers—occasionally appear in this WeAreCaregivers section of our magazine. CLICK HERE to read all of Paul Hile’s columns on caregiving.

(Originally published at www.ReadTheSpirit.com, an on line magazine covering religion, spirituality, values and interfaith and cross-cultural issues.)

Comments: (4)
Categories: Uncategorized

Young Caregivers: What We Talk About When We Talk About Entitlement

by Paul Hile

Each year, millions of men and women get life-altering news. We sit. We wait. We wonder: Why us? Why me?

Each year, millions of men and women get life-altering news. We sit. We wait. We wonder: Why us? Why me?

When my mother was diagnosed with brain cancer, I sat alone in a family room at the hospital and wondered aloud why this was happening to my family.

Why my mother? Why my family? Inevitably, I asked: Why me?

The same thing happened when my wife was diagnosed with a rare autoimmune disorder while we were still dating. My young, athletic girlfriend became a dependent, tired woman who was forced to spend too many days on her family’s couch. I asked: Why her? Why did this happen to us? Why me?

Where do these questions come from? I mean, I must have heard someone else raise them. Maybe my folks said these things when my brother was diagnosed with Type 1 Diabetes. Or maybe I heard it on the television, or in a book. I’ve been thinking a lot about that lately, especially as my wife’s health begins to mend and we’re afforded the time to look back and reflect on the last four years. Throughout her diagnosis and treatment, our family was struggling and, to be frank, angry.

Why were we angry? Well, yes, we were angry because she was now living with a terrible burden, one that was difficult to watch, let alone live with. But the honest to God truth was that she had this burden—whether we liked it or not. My mother had brain cancer. There was nothing we could do to change those realities.

It’s funny—I don’t ever remember being promised good health. I don’t remember ever being told that in my life. Neither does my wife, nor my mother. And that’s because we’ve never been given that promise.

So this question—Why me?—is really a matter of entitlement, right? I feel entitled to good health. I feel entitled to a life without struggle, without pain, without hardship because—well, it’s me. I shouldn’t have to deal with this. My wife shouldn’t have to deal with this. My mother and my family shouldn’t have to deal with this.

Next time you find yourself shouting—This wasn’t supposed to happen!—dare to ask: Says who?

And the answer is: No one. This is dangerous territory. For me, once I moved beyond—Why me?—I was left with just pain, with having to watch the women I love most struggle and suffer and carry a burden I cannot remove, no matter how hard I try. And believe me, I try.

That question—Why me?—let me put off the gravity of each situation. By focusing on the seeming injustice of the news, I was ignoring the reality. I was living somewhere between what once was—and what was to come. That felt more comfortable than asking: What’s next? I was delaying grief, which, in turn, delayed my ability to help my wife and mother.

Here’s the other danger: If I let myself remain there—sitting, wondering over our woes—then the next steps fall to someone else. I can so easily let someone else deal with it all. My wife and I should not have to deal with this, not now, not ever—so someone else should. Of course, I don’t believe that in my heart—but that’s the temptation of remaining lost in: Why me?

When I take my blinders off, when I open my eyes—I realize that we are not alone.

Think about this when you’re sitting in a hospital waiting room paralyzed by the news you’ve just received. There are hundreds—often thousands—of people dealing with the effects of cancer in that hospital alone. Look out the window: Millions of men and women are struggling out there.

The honest question is: Why shouldn’t we be part of the struggle with illness? My wife and mother aren’t entitled to good health. No one is.

I’ve been working on accepting that lately. I’ve been working on acknowledging the fact that my life is my life: My mother is a cancer thriver and deals with life-changing effects from a devastating treatment. My wife has a disorder in which some days really, truly suck. That is my life, and I have to learn to be okay with that.

In the end, here’s what matters: How we live and what we do with our time here on earth. In a world without sickness, my wife and I would still have sought a life of love and happiness, filled with friends and family, good coffee and service to others. The same is still true now. We just have to clear a few more hurdles to get there. We just have to take a few more breaks to let my wife’s body heal.

But we’ll get there, and when we do, we look forward to meeting you and hearing about your life—sickness and all.

When we stop asking—Why me?—we can start to asking: What can I do? How can we live in a way that is purposeful, fulfilling—and splendid?

.

One way you can respond is by adding a Comment, below. We also invite you to share this column with friends on Facebook by using the blue-“f” icon or via email by using the envelope-shaped icon.

Comments: (10)
Categories: Uncategorized

Young Caregivers: What We Wish You Knew …

Start by simply accepting, understanding

By PAUL HILE

Grace and Paul Hile

Grace and Paul Hile

I have these moments, occasionally, while cooking, or cleaning, or even while at work, when I feel young—very young. I think about my wife and I moving throughout our cramped apartment in Atlanta and I wonder where the adults have happened to. Inevitably, I realize we are the adults; we’re paying the rent. We’re fixing the leaks and cleaning up the spills.

Like I said, though, that only happens occasionally. The rest of the time my wife and I feel much older than we actually are (we are both 23). We certainly aren’t your standard issue 20-somethings. My wife Grace was diagnosed with a rare autoimmune disease when she was 19, only a few months after we had begun to date, and it changed everything.

We didn’t have the “typical” college experience. While our peers participated in events, groups, teams and activities, my wife and I were bouncing between doctor’s appointments, struggling to make and maintain friendships, and going to bed early, because when you live with muscle pain, anytime you’re not moving is a blessed gift.

In college, while many of my close friends played intramural sports, video games, or socialized at parties and bars, I spent the majority of my spare time with Grace, helping her get to and from class, consoling her during particularly difficult days, and, in some cases, fulfilling responsibilities you’d expect caretakers to do with elder loved ones, not with your 20-year-old girlfriend.

Young Caregivers: Start by Accepting What We Face

How can you help the millions of young caregivers—and their young loved ones coping with health challenges that often are difficult to understand? Start by accepting that our lives are a bit different.

This may shock you, but Grace had to cope with professors who didn’t believe she was sick. Once in a biology course that held lab hours outdoors, a professor took the entire class up a notoriously steep sand dune in West Michigan. He actually said to her: “It’ll get easier when you get to the top.” Then, adding injury to his insult, he began to give his lecture while Grace was only halfway up the hill. Of course, he didn’t know that afternoon inevitably caused her to relapse. But he never believed she was sick in the first place, and he’s not the only one.

Now, as we’ve come to make a new city our home, we find ourselves face-to-face with realities similar to the medications Grace has to take: pills, hard to swallow, causing unnecessary and painful reactions. This is only our first stop in life. Our first city.

Young Caregivers: Understand That We Need to Adapt

We don’t need pity, or to be told what to do. We enjoy life, professional challenges, good friends. There is more to come in our lives as we pursue higher education and careers. We will make the world a better place—but we need to adapt along the way. What can you do? Simply understand and adapt with young friends in our situation.

Here are the questions we wrestle with: How do you explain to new friends that your life revolves around a disease that they’ve never heard of—nor that they can see? How do you cancel plans last minute because your spouse is feeling especially tired, without upsetting your new friends or using the illness as an excuse or crutch? How do you explain to your employer that you might need to take more days off than other employees, not because you’re lazy, or irresponsible, but because you have doctor’s appointments, and treatments, and days when you’re simply too tired or weak to get up and get going?

These are questions that we often have to navigate with no rulebook or guidelines. We certainly don’t have the answers, nor do we claim to get it right the first, second, or third time around. Often, we have to pray that people will understand, accept and adapt with us.

Young Caregivers: Why should you care?

We’re not alone.

We are millions. Estimates of the numbers of caregivers vary widely, but major studies all agree there are more than 50 million of us nationwide. Within that huge number, 1 in 5 of us are aged 18 to 34, according to a study from the National Alliance for Caregiving. So, there are millions of 20-something caregivers; and, while Grace’s disorder is rare, there are millions of men and women like her facing tough, chronic challenges in their 20s.

These are challenges that define these us—that mature us far beyond our years, for better or for worse.

Our priorities are different than others our age, and even those in their 30’s, 40’s, and 50’s. Ask Grace what the most important thing is to her and without hesitation, she’ll say it’s her health. Ask me what I worry about day-in and day-out, and it’ll always be health care. Will we be able to afford the healthcare she needs to receive her next round of infusions, which, last we heard, cost upwards of $18,000 (that’s about $20,000 less than the original estimate)?  We could care less about new cars, or nice things so long as we are healthy and well. We’ve learned very quickly that without our health, nothing—and I mean nothing—matters.

I was asked to write this article about what Grace and I wish people knew about caregiving among young adults. The truth is, it’s not that different than caregiving for an elderly family member or friend. It’s hard, and taxing, and tests us in ways we never expected. What can you do? It’s pretty basic, yet often ignored: We need people to listen to us and support us without judgment or exception. We need people to know that our priorities are different and always will be. We will have to cancel plans. We will have early bed times. We will have dietary restrictions that make community meals difficult.

Some folks will be able to understand that and others wont. We’ll do our best to accept that, if you do the same.

Paul and Grace live in Atlanta, Ga. Paul is a writer and coffee professional and Grace is a biochemist. They will be moving in the fall as Grace pursues a medical degree. Despite still undergoing treatment, they are pleased to share that Grace’s health is currently the best it has been since her original diagnosis.

Please, leave a comment below.
Share this column with a friend. Click on the blue-“f” Facebook icon and share this story.

Comments: (25)
Categories: Uncategorized