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

We Can Sleep When We’re Dead (But should we wait?)

By PAUL HILE

I think about death a lot.

Perhaps more than I should. Certainly more than anyone else my age.

It’s not that I’m masochistic. I’m just realistic. I understand that death is unavoidable, always possible, always lurking in the shadows, even for someone my age.

Again, it’s not that I’m twisted—not at all—I’m just a young man who has lived, loved, and lost. I’ve lost friends to suicide and war. I’ve lost loved ones to old age and disease. My own wife and mother, as I’ve mentioned in earlier columns, have been weathered by chronic, painful and deadly diagnoses. Even I have already had one too many close calls for comfort. Three to be exact.

But I’ll spare you the details, because they’re unimportant. What is important is the time we have on this earth and doing something important and necessary and ultimately life giving. I think all Millennials are after that, in some way, shape or form. And in order to do that, we must be willing to rest. I realize that statement is counter-intuitive. This might be the hardest lesson I’ve learned as a caregiver, because when you’re made aware that life is fragile, that it doesn’t come with a gift receipt, there is an urgency to life that makes it hard to just stop and breathe.

Last week at We Are Caregivers, Ben Pratt wrote about the need for everyone to listen to their body—not just their mind—and take rest. Good and useful advice for anyone, of course, but it falls on deaf ears with Millennials.

Why?

Because most folks my age have not had to come to terms with their own mortality. Most folks my age still have gas in their tank. They’re young, they’re fresh, and they’re not sleeping.

We have a Super-person complex. We naively believe that we live with the same prescribed amount of years that spans several decades, and as a result we push the limits, we cross the line, and we do everything but take care of ourselves. Eventually, however, we wear down and come to a crashing halt. Take it from me—I pushed the limit, didn’t listen to my body and ended up falling asleep at the wheel only to awake while my car flipped end over end in a field.

We need rest.You_can_sleep_when_you're_dead!

Unfortunately, among young professionals trying to establish themselves in their careers, build families, and maintain social lives—sleep and rest become distant priorities. Not even priorities. More like an inconvenient necessity. I’ve even seen people hang posters that read: “You can sleep when you’re dead.” And then, of course, there’s Bon Jovi’s famous song “I’ll Sleep When I’m Dead.”

Not me. I’m in bed by 8:30.

Take it from someone who has literally crashed and burned. It’s not worth it. You need to rest. We all need to rest.

And if you don’t want to listen to me, listen to what scientists say about the latest in sleep research.

Imagine how much more efficient we could be if we were all fully rested. Imagine how much more kind we would be toward our fellow brothers and sisters. Would we treat each other with more respect? Would we show each other a little more grace? It’s a grandeur idea to say that we’ll sleep when we’re dead, but it’s not realistic.

And caregivers have to be realistic. We don’t have a choice.

So take heart and take rest. Whether you’re a young caregiver, or just a young person trying to get your bearings in this world, remember, we are all only human. No matter our age, no matter our circumstances, we all need rest.

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

Comments: (4)
Categories: Uncategorized

Forgiveness Is More than Skin Deep

Pour a Cup of Coffee and Share Your Story

By PAUL HILE

Forgiveness is more than skin deep—but I started there.

I had the word “forgive” tattooed onto my forearm. I was working at a coffee shop, at the time, and the tattoo was visible to customers. Occasionally, they would linger after receiving their drink and ask about the tattoo.

Then, they would share their story. Today, I hope you’ll do that either in a Comment, below, or via Facebook (share this column using the blue-“f” facebook icon) or send me an email at WeAreCaregivers@gmail.com.

Paul Hile with tattoo and coffeecupI’ll go first. Here’s my story …

Forgiveness is elusive. If I’m not mindful, if I’m not looking for the opportunity, if I’m not reminded to work toward forgiveness, it is far too easy for me to carry my burdens far too long.

And that’s why Ben Pratt’s recent column on forgiveness was so remarkable, because when you hear a story about true forgiveness—when someone is fully and completely forgiven, or able to fully and completely forgive—it’s nothing short of inspiring.

As a caregiver, I’ve struggled with forgiveness. I have spent so much time wondering why my wife and I lost friends after her diagnosis. I couldn’t understand why many of her professors questioned the legitimacy of her illness, and treated her so poorly. Similarly, after my mother was diagnosed with brain cancer, I found it difficult to forgive people who might have been unkind.

But I was reminded after reading Ben Pratt’s column, that with grace and time, we can forgive those who have treated us poorly, abandoned us, or—as was the case with Ben’s father—caused us harm.

As the years have passed, I’ve worked towards forgiving those that could not stand with us during our most difficult hours. I’ve come to learn that forgiveness and reconciliation are two very different processes, and while I still might not have friendships with people I once cared deeply for, I have forgiven and moved forward, as has my wife, and that’s okay.

The forgiveness I really struggle with, however, is not as easy to define, because it’s not directed at any one person, but rather at the situation. When my wife was diagnosed with her autoimmune disorder, when she could not walk up stairs by herself, or get out of a car without help, I was hurt and sad and angry that my wife, my love—a person who was so active and full of aspirations and dreams and ambitions—was suddenly consumed with a battle she shouldn’t have had to face. And while I realize that we are not entitled to a life of good and abundant health—if I’m being honest, I’m still angry.

But here’s the problem: How do you forgive—a situation?

As a person, I am fallible. I make mistakes, and so I can realize that other people make mistakes, too. I know I haven’t stood by friends and family in their time of need, and so I can ultimately understand and forgive those who could not stand with us.

But how can I forgive something that I cannot, despite my best efforts, understand? I don’t have an easy answer to this question. All I know is that forgiveness is a process. It takes time. And it involves sharing our stories.

I remember, back in the coffee shop, a woman who told me about forgiving her ex-husband, a man she told me she could not stand, a man she said she should not have married, a man who was unfaithful to her. She forgave him—on his deathbed. Before he died they spent hours laughing and crying, talking about the problems in their marriage they could never bring themselves to discuss at the time, and before they said goodbye, they both sought forgiveness, and they both were forgiven.

This story, the one Ben shared recently, and others serve as guideposts for me as I seek to forgive and be forgiven. They allow me to navigate this process of forgiveness, and remind me that life is more full and rich when we are first able to accept an outcome and then move beyond it; when we are able to understand that we are all capable of mistakes, that resentment and anger are far too heavy of burdens to carry, and that forgiveness is the ultimate prize.

Forgiveness looks and feels and acts differently for each one of us. We cannot expect ourselves into forgiveness, or wish ourselves forgiven—we just have to arrive there. And we will arrive there, because each of us has the capacity to forgive.

You might not have the word on your arm, but forgiveness is more than skin deep. It’s written into our DNA. And so I encourage you to work toward it, whether there is someone you need to forgive, something you need to forgive, or you’re the one asking for forgiveness.

Along the way, pour a cup of coffee—or your own chosen beverage—and share a story.

My cup’s full. I’m listening.

Comments: (9)
Categories: Uncategorized

Stuck in traffic? Have you thought about it like this …?

Photo of a traffic jam by Mario Roberto Duran Ortiz. For public use via Wikimedia Commons.

Photo of a traffic jam by Mario Roberto Duran Ortiz. For public use via Wikimedia Commons.

By PAUL HILE

WHEN YOU become a caregiver you learn to let go. It’s not necessarily something you want to do—you have to do it. You realize, pretty quickly, that you don’t have any control. That’s a difficult pill to swallow because we all want control. But, when your mother falls and breaks her hip the day before Thanksgiving, or you get a phone call from your brother telling you he has cancer, or your husband suffers a stroke, it hits you:

You have no control. You’re just along for the ride. And sometimes you get stuck in traffic.

This has been a year of change for my wife and me: new jobs, new cities, new friends. It also has been a year of renewed health for my wife, who started a new treatment with success. But there was a period of time after our move where we hadn’t found a new doctor for her, and she had missed a treatment, and we needed to take action quickly. As it would happen, our best option was to drive to Chicago, a six-hour trip, for a two-hour appointment.

I am telling you all of this because nothing ever goes according to plan, and caregivers know this better than anyone. Forty-five minutes into our trip and we were stuck in traffic. This wasn’t stop-and-go traffic, only a minute’s inconvenience. This was three hours of nothing. No movement. No go, just stop.

Now, I’ll be the first to admit that when I am driving on the highway and I pass major traffic in the opposing lanes, I think: Thank God that isn’t me. That’d be terrible! We’ve all done this, at least privately: We see someone going through a difficult time, suffering the loss of a spouse or child, or grieving a diagnosis of cancer in the family, and we think: Thank God that isn’t me. That’d be terrible! Of course we don’t celebrate in their agony, but we’re relieved that, this time, we weren’t the ones being held up.

But the truth is: Life doesn’t come equipped with Cruise Control. Sometimes the traffic jams aren’t in someone else’s lane. And, sometimes we get stuck. Sometimes the person you love is diagnosed with something dire, and there’s nothing you can do. We wait. And we try to help. We look for any opportunity to turn around or take an alternative route. As a caregiver and husband, I keep looking for that perfect thing that will cure my wife: a new diet, a new treatment, a new thing that will solve all of her problems. I keep thinking: If only I had checked the directions before the trip, we could have avoided this!

Have you whispered something like that to yourself? It’s so frustrating: If only …

But here’s the real question: Can we grab hold of all that anxiety, frustration and anger—and refocus on …

Well, let me tell you more about our recent traffic jam. We were on our way to Chiago—with my wife’s health in question—sitting in our little Volkswagen Jetta that my wife has dubbed “Alejandro,” parked in miles and miles of traffic. Only 50 minutes from our home! Not moving!

So, I turned to my wife and grabbed her hand. “Sometimes you’re just stuck in traffic,” I said.

She nodded her head and I knew she understood what I meant.

“But I’ll tell you this,” I continued.

“What’s that?”

“I wouldn’t want to be stuck in traffic with anyone else but you.”

CARE FOR MORE?

First, if you like this column by Paul Hile, please share it with friends via Facebook or Email. You’ll find icons with this column to help you with your sharing. Or use the “Print” button to print and share this with someone who needs to read it. If you’d like to read an earlier column by Paul, he also wrote “What We Talk about When We Talk about Entitlement.”

Comments: (2)
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