July 20, 2014

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 [email protected]

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 readthespirit.com, an on line magazine covering religion, spirituality, values and interfaith and cross-cultural issues.)

June 8, 2014

The cry of the disabled caregiver: “I’m not a good patient!”

“I lay ill through several weeks, and the usual tenor of my life became like an old remembrance. But this was not the effect of time so much as of the change in all my habits made by the helplessness and inaction of a sick-room. My housekeeping duties, though at first it caused me great anxiety to think that they were unperformed, were soon as far off as the oldest of the old duties. … I had never known before how short life really was and into how small a space the mind can put it.”
Esther in Bleak House, by Charles Dickens

“Step 1 of learning to walk in the dark is to give up running the show. Next you sign a waiver that allows you to bump into some things that may frighten you at first.”
Barbara Brown Taylor in Learning to Walk in the Dark

By BENJAMIN PRATT,
author of Guide for Caregivers

Hair Pulling StressHave you lived through this reversal of roles? As a caregiver, you suddenly find yourself in the role of care-receiver!

You’ve probably raised the cry of the disabled caregiver: “I’m not a good patient!”

Read my story—and you’re likely to nod your head. It was a serious problem involving one of my feet that flipped the roles in our household: My wife Judith, who has occasional periods of disability, suddenly was caring for me! I freely admit that I’m a bad patient, primarily because of my im-patience. And, if I’m honest, my pride.

One day, when Judith slipped out of the house to buy a few groceries, I was nestled in my chair, reading. I was under strict orders from my doctor and my caregiver-wife to stay off my feet. So, as she departed, I was fixed in the chair, foot elevated to reduce the persistent swelling from my recent surgery and a four-month-long infection.

When she returned, she went about tucking goodies into the pantry and refrigerator. She slipped in a wry comment, “I see you had a visitor while I was gone. It was so nice of whomever to wash the few dishes in the sink.”

I sucked air, shuffled and hurumphed, saying, “I stood on one leg while I washed those dishes.”

“So, you hopped over here on one leg?” she retorted.

“I can’t stand, pun intended, not doing my share of housekeeping duties.”

Again she retorted with a wry grin, “Guess what? This is one more day you are not going to receive a smiley face sticker!”

This was one of the lighter, more playful exchanges over recent days. I have not transitioned well from being a caregiver to being a care receiver. I have been obstinate, willful, sometimes making her my enemy and not my friend. This switch of roles has forced me to examine my motivations and my behavior.

I reluctantly confess how proudly I identified as a caregiver. The role fit my persona and reinforced my sense of purpose and identity. I invested so much of myself in that role that I became too proud to receive care. I am facing the reality that I resisted letting another love and care for me. I have been boldly confronted with my stubbornness and resistance to love and grace. I have selfishly held on to being only a giver; resisted being a receiver. I definitely need to accept, even encourage, another’s gift of care.

I have been a patient a few times in my life but never for the duration nor gravity of this occasion. When I was in my early thirties, I broke both my arms at the same time and was totally helpless for a month. This four month stint of infection, out of control blood pressure, and finally a surgery (and possibly another ahead), undergirded with the reality of my age, has thrust the life questions of health, mobility, place of residence and purpose of life all center and forefront. Oh, and did I mention, aging comes at a most inconvenient time!

Over the years, I have used my imagination to foster empathy and compassion as a caregiver. It is clear to me now that my imagination has lacked what only living the experience of patient can teach. Imagination pictures that living with a wounded foot makes one or two vertical steps seem like a hill. Actually living with a wounded foot can make one step feel like stepping across the Grand Canyon.

Then, a week ago, journalist David Briggs—who reports on new research for the Association of Religion Data Archives—posted a column on a new study making this very point: “In a culture that prizes rugged individualism, and can interpret personal needs as a sign of weakness, many Americans find it is more acceptable to give than to receive. Yet the blessings appear to multiply when you are able to do both, according to new research. Americans who both meet the needs of others and are cared for in a nurturing community are much more likely to love and trust their neighbors.”

The research makes sense, doesn’t it?

Sitting where the other sits is surely the best way to foster our empathy and compassion. If only every preacher would sit in the pew; every jailer behind the bars; every wealthy person roam the streets at night; every white be a person of color; every man, a woman; every caregiver, a patient—we might become a more hospitable world.

I’m still a bad patient—but I am starting to feel more grateful for my experience. How about you? What’s your experience?

March 23, 2014

‘As he shared his story … something was missing’

Heather Jose photo.

Heather Jose

We need to talk. Those four words can ease many of our stresses and strains as caregivers—and as human beings. That’s why I welcome conversations at my Facebook page—and I love to see our writers engage in honest dialogue. This prompts us all to sit down, pour a cup of something—and talk. Right now, Paul Hile and Benjamin Pratt are talking about the dangers of unresolved anger and the potential of forgiveness. This conversation started with Ben’s column, Clearing Boulders, and continued with Paul’s Forgiveness Is More Than Skin Deep. Today, Ben gives us …

‘Did I Say Anything about Anger?’

By BENJAMIN PRATT

Paul Hile wrote a very personal account of his life as a caregiver and his efforts to forgive—in response to my tale of forgiveness by my father-in-law. In his story, Paul confesses his wide range of deep feelings, from joy and gratitude to guilt and anger. This admission is so necessary for healing the broken pieces of our souls as we move toward forgiving others and ourselves. It’s not easy to reach the point of honesty Paul shared with us.

Let me tell you about a different conversation I had recently.

BEN PRATT says: "I'm such a big believer in sitting down to talk over a cup of coffee that a logo of two coffee cups pops up on special pages in my book 'A Guide for Caregivers.' I invite readers to plan a future conversation with a friend." (Click this photo to learn more.)

BEN PRATT says: “I’m such a big believer in sitting down to talk over a cup of coffee that a logo of two coffee cups pops up on special pages in my book ‘A Guide for Caregivers.’ I invite readers to plan a future conversation with a friend.” (Click this photo to learn more.)

Michael phoned me at the suggestion of his parent’s pastor who had told him I was a caregiver writing a book for caregivers. We met at a local coffee shop, sat at a corner table, and, as the coffee cooled, we introduced ourselves. There was a quiet moment and then, he began to tell me of his long-toiling, faithful commitment as a caregiver of his parents. I was moved by his honest, compassionate, straight forward, sincere rending of his life tale. Midway through his story, I sensed there was something missing—something I had experienced in myself and in other caregivers.

He began, “I was about two years from retirement at a job I liked, when my mother called to say that Dad wasn’t doing well. She asked me to visit. What became clear soon was that neither one of them was doing well. I talked to my two sisters about the situation, and they said they couldn’t really help. I made a rather impulsive decision: I had enough money and resolve to quit my job and move back home to help care for my mom and dad.

“It may be that I moved home because I had guilt about not visiting them enough. I know I felt some shame about my testy relationship with my father. He pushed me and I pushed back—that was our history.

“I moved home and life got pretty intense and difficult very quickly. I was feeding, bathing, and cleaning my father when he soiled himself—stuff I never even imagined I would be doing. It was difficult full time work, and I was doing most of it because my mother was becoming more confused and less helpful. She would leave the stove on, ruin food and fail to function in the kitchen or at other simple chores. I was losing sleep, not eating well and gaining weight. My sisters seemed to drop off the map—they called but didn’t come.

“After about 10 months, my father had a stroke and died a week later. I did something I have rarely done, I cried and felt very sad, but mostly, I felt guilty. I blamed myself for not doing enough for him. Over the next few months, Mom became more confused and unable to care for herself. It was one thing to bathe my father but I didn’t want to do all those personal things for my mother. I got her into a care facility and, before too long, she often didn’t know me. I visit every day. I never know whether she will recognize me or not. I keep thinking I let them both down—I should have done more.”

We sat quietly, as men often do, with our hands clasped, leaning in, elbows on spread knees, eyes staring at nothing on the floor. I had time to feel and then to think.

I finally said, “I’m touched by your care of your parents. You have told me about your love, your compassion, your long-suffering faithful commitment. I am honored to sit in the presence of such a loving, sacrificial man. You gave and continue to give a remarkable gift to your parents. But I get the sense that I am more grateful for your generosity than you are. You don’t seem to value your gift. I’m also puzzled.  Can you tell me more about your anger?”

He slowly raised his head, “Did I say anything about anger? I don’t think I mentioned it.”

“I know you didn’t. You told of your shame and your guilt. You did what many caregivers do: You gave your whole self, body and soul. Then instead of appreciating what you have done, you pronounced yourself guilty! You blame yourself for not being all powerful. You feel guilty for not being powerful enough to make their last days tranquil.

“One of the things I have learned is that guilt and anger are often two sides of one coin. Guilt has its root in the daunting shoulds of our lives. We should be able to do it all! Anger is also rooted in our helplessness. Anger gives the illusion that we are powerful and not helpless. Each of us has plenty of reasons to feel legitimate guilt, but I can’t detect one thing in your story that deserves that indictment.

“Your guilt may serve only to keep you from acknowledging and realizing your anger. Both guilt and anger are empty answers in your journey of respectful caregiving.”

February 23, 2014

Love & Loss bring a legacy of fond memories and grief

Heather Jose photo.

Heather Jose

This week marks what would have been Dad’s 73rd birthday. He died last January after a long debilitating illness.

My family was all together in Disney World for his birthday last year, on a trip that was planned years in advance. We had no idea of the timing, but it was bittersweet as we all gathered there.

Disney World birthday treat for DadWe marked the day with a spirited round of Happy Birthday after a waiter had brought out a dessert with a candle for the occasion. I felt bad for Dad as he tried to identify who this special dish belonged to, but it was really nice of my brother to have ordered it to acknowledge the day.

We set it in the center and enjoyed it together.

A year later I am doing fine, but I have to say that grief is a strange thing. It sneaks up on me at random times, with seemingly no trigger. More often than not I simply long to have another conversation with him. Or just to ask his opinion about something. He always had an opinion.

There are many levels of grief and loss. This journey is different for everyone. I had a lot of time to prepare for Dad’s death and, at the end, he wasn’t the Dad I had known. I think that made it easier to let him go. In some ways, the end was a relief.

However, I never feel like I can say that without a bit of guilt.

It was a different story when a couple, who are friends with my mom, lost their adult son this year after caring for him since birth. He was in a wheelchair and while not expected to live through his teens—he lived to be 50. His parents cared for him every single day. It was a process that took hours. It was very physical work. They did it with love.

They had built their lives around him. The hole left in their lives is much bigger to fill as they try to find a new “normal” without him.

They say that sometimes the hardest thing is to face people. Since their son passed more than one person has told them: “It must be such a relief to not be providing all that care anymore.” But the truth is they would much rather be able to care for him each day.

The truth is I don’t have a lot of experience with death. I can see that we all grieve differently, and that time may relieve the pain but it doesn’t take away the loss. We try, in our own inadequate ways to comfort, but sometimes that makes it worse.

Gide for GriefI want to close by recommending the very helpful book on grief by my colleague the Rev. Dr. Rodger Murchison. His Guide for Grief includes both scientific research on grief as well as Rodger’s lifetime of pastoral wisdom in working with families. One of the central themes of his book is that we all should be compassionate toward friends and loved ones who grieve over what may seem like long periods of time.

Rodger writes that noted experts on grief warn: “We should be suspicious of any full resolution of grief that takes under a year.” For many people, the pain of grief lasts more than two years—in other words, even beyond a couple of cycles of annual “anniversaries” without our loved one. And, in some cases, the pain of grief can last much longer.

“No one welcomes grief,” Rodger writes, but “grief itself is not the enemy. The definition of grief is our response to loss. People grieve for all kinds of reasons: loss of a loved one to death, loss of health, loss of job, loss of relationships, infertility, separation, infidelity, divorce, spiritual crisis, retirement—on and on. Grief is like breathing air and drinking water. If you are going to live—then you are going to grieve.”

What is your experience with grief? Do you have suggestions or a story to share? Leave a Comment here or visit me on Facebook.

And, please, do a good deed this week and share this column with a friend. You can do that easily by using the blue-“f” Facebook icons or the tiny envelope-shaped email icons.

February 3, 2014

Heather Jose: ‘The greatest gift cancer gave to me …’

Heather Jose

Heather Jose

A note from your host: “This week, a lot of readers have been talking about a photo I shared on my Facebook account of my adopted son as we celebrated his 13th birthday. Along with the photo, I wrote: “The greatest gift cancer gave to me was the opportunity to adopt.” The moment I posted that line, friends began asking for more of the story. So, today, here is the story of how we got Ty.”

“Would you consider adopting a baby boy from India?”

This question led me to my son. I had sent an inquiry to several adoption agencies asking them if they would work with me given my status as a breast-cancer survivor. I got many responses, but this one sparked my interest.

Once I had finally talked my husband into adopting, I started exploring countries. India hadn’t really been on my list, but after a few conversations I was hooked.

In 2001, India had a low incidence of drug and alcohol use. The orphanages were generally very well staffed and children were paired with ayahs so that they could bond. And, because of concerns about caste and religion, many Indian families would not consider adopting even a perfect child.

We began our search in January 2001 with all of the paperwork and home studies. By spring we were moving right along and ready to be matched. Then the government in India shut down all of the adoptions in the Southern part of the country due to corruption. Fast forward to September 2001—does that ring a bell? The world became a whole lot smaller and the feud between India and Pakistan intensified.

Ty age 18 months within the first week that he was homeFortunately, in January of 2002 my agency established relations with a small orphanage in Pune and we were matched with a little boy. He was the first boy they had had in a long time. His birthday was January 22, 2001, right about the time we starting praying for him.

The adoption process was delayed until summer by red tape—then more red tape. My mom and I arrived in Mumbai during a monsoon. My husband stayed home, partly because we didn’t know when we would travel and partly because we didn’t want to bring our daughter Sydney. Ty and I met the next day at the orphanage. We were brought there by a social worker. Upon our arrival we were introduced to the person in charge and ushered in to an outdoor space to have a warm Coke. I remember thinking, “how fast can I drink this so I can meet him?”

With the coke gone, I was able to meet my son.

He was beautiful. He was terrified.

They put him in my arms and he kept looking away. His ayah kept pointing to me and saying something akin to momma. I just shushed and rocked him. Next, there was a little ceremony involving flowers, sweets, and bindis. And then we were off!

They had given us a banana in case he was hungry and we left in a hired car. He loved the car. Since we didn’t have a car seat Ty stood on my lap and held on to the handle above the door. The social worker stopped and helped us get a few groceries that Ty might like and we returned to the hotel.

We spent the next couple of days doing nothing at the hotel. It was great. Ty was wary at first but within 24 hours he called me “Mama.” We played with the toys I had brought and spent a lot of time looking out of the window that overlooked a busy street. At any given moment you could see oxen, cars, rickshaws, children in school uniforms, or women in beautiful saris. My mom would reach her arms out to Ty and say, “Up?”

Soon he was calling her “Up”!

After Pune we traveled by plane to Delhi where we visited the embassy. We were the first people to come through for an adoption since 9/11 with our specific guide. We tried to do a little sightseeing, but I quickly decided against it given the 108-degree heat with an 18-month-old who was still getting to know me. I enjoyed our time in the hotel room bowling with water bottles and answering the phone endlessly.

The trip home took forever. I may have not gone through labor to have Ty in my arms, but 18 hours on a plane was no picnic. We arrived in Detroit out of diapers  and completely exhausted.Facebook photo of Ty by Heather Jose

My husband was at the airport to meet us along with our daughter and in-laws. Ty was even more terrified of my husband. He hadn’t met many men in India. He wouldn’t let Larry near him.

Fortunately, Ty adjusted amazingly well. He hit the ground running. After getting over his fear of Larry he became Larry’s shadow. I have no doubt that Ty was meant to be with us.

Now, about that line I typed into Facebook recently: I would never say that cancer is a “gift,” but cancer did change the path of my life and because of it I have had experiences that never would have been. I can honestly say that I had never thought about adoption prior to cancer.

Now, I can’t imagine my life without Ty.

January 20, 2014

“Wait! Before you say that …”

Heather Jose photo.

Heather Jose

As 2014 begins across ReadTheSpirit magazine, writers are helping us rethink our relationships. They are reminding us that compassion and hospitality—core strengths of caregivers—are universal goals. Last week, poet Judith Valente published a very helpful column called “10 Steps Toward Peace” that is right in line with my column today, especially in her advice about stopping to think before we speak. I hope you will help us to continue this discussion. It’s important.

When someone finds out that I had cancer and the next thing they say is, “Let me tell you about …” Many times the story about their relative or friend is fine—but often the story ends with the person dying. How many times has this kind of thing happened to you?

Have you been in my shoes, hearing such a grim story? Or, have you been in the role of the storyteller? You need to know: Such stories are not helpful. More often than not, I walk away from such a story thinking: Why did she tell me that!?!

As I write this column, I’m thinking about a woman who I met at a speaking event who just found out that her cancer has returned. I don’t know her well, but we do interact often on Facebook. My heart hurts for her right now. Not necessarily because of the cancer itself—from what I know, she will get past that—but for the draining emotional struggle of managing her emotions while being bombarded by others.

If you know that you’ve been guilty of rushing to tell such unhelpful stories—I realize that the impulse doesn’t come from ill intent. The stories spill out of us because we don’t stop to think before speaking. And I admit, there is no Emily Post guide to caregiving conversations. So, in the spirit of Judith Valente’s steps toward more peaceful and compassionate living, I’m going to offer my own set of tips. Let’s call this …

“Wait! Before you say that …”

Photo by Pomona, shared for public use via Wikimedia Commons.

Photo by Pomona, shared for public use via Wikimedia Commons.

When you’re visiting someone going through a challenge as tough as a new cancer diagnosis, consider these six tips:

1. Whatever the diagnosis might be, never tell a story about someone who has died of that disorder.

2. Don’t pretend nothing is different. Life has changed dramatically for this person. Think carefully before you speak.

3. You don’t suddenly have the right to ask personal questions that you wouldn’t normally ask—just because of a diagnosis.

4. Unsolicited advice is still unsolicited advice.

5. This is not about you. There is a time and place for nearly everything and this may not be the time for your agenda.

6. Back off. Wait. Listen. Think before you speak or act. The person may need some time to process this major life change. It is overwhelming to keep everyone “in the loop,” so don’t pepper the person with questions and stories. If you must find out what is going on, then track down a friend or family member. Down the road, there may be many important ways you can help.

Do some of these tips sound harsh? I’m sorry, but sometimes I need to point out the obvious because—unless you’ve been the recipient of a well-meaning flood of responses—you may not realize the impact some of the stories and questions can have.

Help us share this conversation

Please, add a comment below about your own experiences or tips. Use the blue-“f” Facebook icon or the envelope-shaped email icon to share this with friends. Or, use the green “print” icon to make a copy of this column and discuss it in your small group. I don’t regard my six tips today as the final word in this discussion. Please, tell us what you think.

December 22, 2013

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.”

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