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As caregivers, we need to listen …

… which means we need to speak honestly—now

Heather Jose photo.

Heather Jose

EVERYBODY is talking about this. America is aging. Millions of us are either caregivers—or the recipients of care. But are we really sure all of that care is aimed in the right directions?

Anyone who picked up the New York Times on Sunday found two prominent stories asking this very question. Nicholas Kristof wrote A Loyal Soldier Doesn’t Deserve This about a disabled veteran struggling with inadequate long-term health care. Janet Steen wrote My Mother’s Keepers about the painful choices of caring for her mother in the final stages of Alzheimer’s. Janet calls this journey “impossibly hard.” Of course, she’s right.

I found myself talking about this with colleagues at a nursing home in the Alzheimer’s unit.

I was working there that day as an occupational therapist. First thing in the morning, three of us found ourselves helping residents of the home at the breakfast table. I was checking on a resident to see how well he was able to feed himself. Near me, an aide was helping another man eat breakfast and a nursing assistant was helping a lady do the same.

The aide worked for hospice and she had been caring for this gentleman for more than a year. The gentleman’s condition had declined to the point that he no longer spoke, his body was rather rigid and he communicated only with an occasional smile. The aide was great with him: kind, connected, everything you would want from a loved one.

The nursing assistant noticed her care and asked in a light tone: “Will you take of care of me when I am like that?”

The aide from hospice said, “Of course!”

But the conversation had just begun. From that beginning, the nursing assistant said that she didn’t really want to be around if she couldn’t enjoy life. When I asked her what that meant she didn’t hesitate to say that she wanted to be able to feel the sun on her face and interact with her family. Without that, she said, life wouldn’t matter any longer.

We both agreed with her. We all know the reality about such conditions. Neither of us wanted to end up like that.

I have been thinking about that conversation ever since. I keep asking myself: What if we all spoke honestly about what we want—while we can still speak clearly about it? Of course, as caregivers, we need to listen to people as they express their wishes. Even if their wishes aren’t the same as ours, we should respect them by not pushing endless care and treatments and procedures—sometimes far beyond what they really want.

Take a look at the video below, produced by the St. John Providence Health System. An advance care directive is one way to speak honestly—while we can.


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Love the sun? Help us make a spring list!

Apple tree blossoms in the spring sunlight

In the spring sunshine, trees finally are budding!

LIGHTbright light—poured in my window this morning!

I haven’t seen much of it in the last few months, but I remember it well. Sunshine! Thank God for sunshine!

With the sun and warmer temperatures comes a list of things that need to be done to help my house and yard transition over to my favorite time of the year: summer. I know that I am not the only one that has a list.

Last fall we asked for your help to provide some tips and topics for caregivers to get through the holidays and winter months. This week we are asking again: What is on your to do list this spring? How do you enlist help for tasks? What are the challenges that you are facing? What has been helpful for you in earlier spring and summer seasons?

We’ll share more spring and summer tips—with a particular focus on caregivers—in coming weeks. Please help …

Leave your comments below and we will compile them soon.

And, maybe by then the snow will have melted out of my yard!

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When caregiving roles are reversed …

Heather Jose photo.

Heather Jose

My husband and I have always considered ourselves a team.

Like any good team, we each have roles and at this point we know them well:

  • I am the grocery shopper (although my daughter is getting pretty good at that); he is the laundry guy.
  • I am the talker; he is the listener.
  • I am the patient; he is the caregiver.

This week the tables had to turn when he went through a procedure to have his ACL repaired. He tore it while coaching football last fall but waited until now to get it fixed. So I found myself in the waiting room for once. Just so you know, I have had around 10 surgeries since we have been married in 1995, not to mention all the other cancer stuff. He has now had two.

We have it down to a science when I am sidelined. He is an amazing caregiver. He is good at taking over the things that need to be done and anticipating my needs as well.

Just some of the new accessories in our home.

Just some of the new accessories in our home.

Me? Well … maybe not so much. I knew I needed to up my game as he got in to the van to go home. I was half way around the vehicle before I realized that someone needed to shut the door and it shouldn’t be him. Duh.

It got better when we got home. I attended to all of his needs, from pillows, to special request foods, to a painkiller schedule for meds. But this arrangement just isn’t natural for us. I find myself forgetting that he can’t get around well, or that due to the crutches he may need something carried to where he is sitting. I’m happy to do whatever he needs—I just need to remember to think about what that might be.

So I am praying we get through the next week or so unscathed. I hope he doesn’t hurt himself because he tried to do something more than he should because he didn’t want to ask. I hope that I can keep my focus on the fact that he needs a little more help right now. Fortunately, this is a relatively short term thing for us.

I don’t want to be the patient anytime soon, but I have to say, it really does work better that way.

What are your stories or ideas from such times of role reversal? Leave a Comment here or visit me on my Facebook page.

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‘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?’


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.”

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Forgiveness Is More than Skin Deep

Heather Jose photo.

Heather Jose

PLEASE WELCOME BACK columnist Paul Hile, a young caregiver who also does a lot of editing and other consulting at ReadTheSpirit magazine. His earlier columns include What We Wish You Knew and What We Talk about … When We Talk about Entitlement. As a writer—and as a reader of We Are Caregivers—I love the way that various “voices” come together here and connect with each other for our inspiration. Here, Paul connects with another popular columnist, Benjamin Pratt. Thanks Paul!

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

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.

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Simple Gifts: Seeing opportunities to humbly help

Heather Jose photo.

Heather Jose

WELCOME BACK the Rev. Dr. Benjamin Pratt, author of the Guide for Caregivers. Today, Ben brings us another thought-provoking column about the challenges we all face in helping others. Recently, ReadTheSpirit published an in-depth interview with the famous teacher on compassion and peacemaking, Johann Christoph Arnold. In that Q&A, Arnold said that the key to happiness as we age is finding daily opportunities to help others. Today, in a free-verse poem, Ben simply captures a trio of such moments in a typical day. He starts by recalling the 1848 Shaker hymn, Simple Gifts, by Joseph Brackett:

When true simplicity is gain’d
To bow and to bend we shan’t be asham’d
To turn, turn ‘twill be our delight,
Till by turning, turning we come round right.

Simple Gratitude for Simple Gifts


A Praying Mantis in the wildHe is old
uses a cane
bent over and slow
takes all he has to climb into the city bus
Takes the only seat left
Others fill the aisle—hanging from the loops
The bus jerks forward
He searches each pocket, jacket, pants, and shirt
His nose is running, now dripping—
but nothing to wipe it
Across the crowded aisle, I reach into my pocket
where I always carry napkins
I slide some toward him
across the aisle
between the legs of standers
He takes the napkins
wipes his nose—never looks my way
I know he’s grateful
if a bit ashamed
I know because I’ve been there.

How she managed two shopping carts
we do not know
She loads the rear of her SUV
with food and drinks
Stuffs her small child in his car seat
Ready to go?
Two carts to return with:
Child waiting. Car unlocked. Groceries piled.
My wife sees her predicament
“I’ll take your carts back.”
“Oh, thank you. Thank you!”
As she drives away,
she rolls down her window:
“Oh, thank you. Thank you!”

She is hanging upside down
inside the window screen
She looks puzzled, trapped, chagrined—
her ET-like eyes
overwhelming her small head
bobbing on her long, slender, mint-green body
I’m certain she is a she—
her regal head contentedly nodding,
despite her obvious predicament
I slip a cupped white paper under her
The queen slowly steps forward
entering her carriage
“Welcome Madame.”
She is deferential to her new footman
I escort her outside
where she slowly exits her carriage
onto an hydrangea leaf
She pauses as she turns
and with the slightest nod of her head
she acknowledges her new footman.


(FEEL FREE to share this column with friends. You can do so by using the blue-”f” Facebook icons or the small envelope-shaped email icons. You also are free to reproduce or repost this poem, as long as you credit Benjamin Pratt and


The Rev. Dr. Benjamin Pratt is a noted expert on compassionate care and is the author of Guide for Caregivers.

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Oh the weather outside is frightful …

Heather Jose photo.

Heather Jose

Was it really news to any of us when the International Business Times reported, over the weekend, that this is one of the worst winters in recorded history for the northern U.S. states? This bitter, snowy season ranks up there with some truly dreadful winters in the 1870s, 1920s, 1940s and is close to that awful winter of 1995-96, according to the Times.

Headlines like that are popping up nationwide. A state official in Minnesota who is charged with tracking weather trends issues something called “The Misery Index” and, based on that Index, Minnesota is experiencing the most miserable winter in 30 years.

Snowy Winter DoldrumsBut we knew that, didn’t we? That is, the millions of us living north of the ever-shifting freeze lines in the U.S. knew it.

Don’t get me wrong. I love humming lines like: “Oh the weather outside is frightful …” But, only around Christmas.

By March, the appeal is gone. Here in Michigan we are setting records for cold and snowfall. It’s a struggle. I went grocery shopping yesterday and had to pull rather than push my cart to the car as it wouldn’t roll through the snow. By the time I got everything loaded my fingers were frozen.

I could have headlined this column: UGGGGH!

I try to stay positive, but it is easy to feel a little down in the dumps. Are you feeling that way too? What do you do to make yourself feel a little better?

There are a few things that I do to feel a little happier.

SUNLIGHT (real or artificial): Most mornings, I get up, sit in my chair, read my devotional, and turn on my sun light. I soak it up for 20 minutes. Ahhhh….

DARK SKY APP on my phone: Why? Because it gives the sunrise and sunset time for each day. And I can see that the days are getting longer.

I GET THE MAIL (once a week): I’m no fan of the mail. Our mailbox has been unreachable for months now so I pick it up at the post office. I’m considering it a gift that I only have to deal with it once a week instead of daily.

BUY FRUIT: Fresh fruit makes us all happier. It’s worth the cost.

WARM SOCKS: I hate cold feet. I want warmth. Good socks help.

For me, happiness really does spring from the little things. What are your little things? Will you share something that helps you get through? Add a comment here, or jump over to my Facebook page and drop me a note. I’d really like to hear about your favorite way to beat the winter doldrums.

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