Category: caregivers

Apr 25

Do you need a vacation from illness?

 

Ever feel like you need a vacation from cancer, dementia, ALS, heart disease or whatever health trial you’re facing?

You probably do—at least a mental one and maybe a physical one as well.

Believe it or not the chemo room at Dr. Marc Hirsh’s office, where I worked as a patient advocate for nearly 20 years, became a mini-vacation from cancer for patients when we threw elaborate parties for two days near Halloween. 

One year it was a Sesame Street theme and I obliged as Miss Piggy (For the record, I “porked up” with eight pairs of rolled up socks under my skirt and down my blouse!)

Another year we dressed  up as  the Wizard of Oz with the good and bad witches giving chemo. I covered my whole yellow-clad body with a long piece of yellow shelf paper outlined in brick shapes.  “Follow the yellow brick road!” I announced in my best Munchkin voice as I led patients back to the chemo room.

You’ve probably heard of the non-profit organization Make-a-Wish which grants wishes for children facing a life-threatening illness—often a trip to Disney World or a chance to meet a famous athlete or movie star.  But did you know there are groups which offer free wishes for adults with cancer and other life-threatening illnesses?

When I worked as an advocate I helped several people get free dream wishes. A young mom went to Disney with her husband and 4-year-old. Another family got a free week’s vacation at a beautiful Delaware beach home and a mother of four, who had just finished treatment got a much-needed holiday in Myrtle Beach.

If you Google “adult cancer patient wishes” a slew of them come up. The rules are different for each wish—some are only available to certain ages or specific kinds of cancer, while others include any life-threatening illness. Some are based on financial need—like if you can’t afford a vacation yourself.

There are dream wishes for everything from fly-fishing excursions to free house cleaning. Normally you can only have one wish granted, so choose wisely before applying. Ask a nurse/patient navigator or a hospital social worker to help you with the paperwork because usually you can’t nominate yourself. If you don’t have the energy to apply, but need a dream vacation, ask a trusted friend or family member to take the lead and make it happen. I’m sure someone would be thrilled to have a specific way to lighten your load.

My friend Barb Titanish and her wonderful organization H.O.P.E., which ministers to hundreds of cancer Hopelinepatients and their families is actually in the process of creating a retreat in southcentral Pennsylvania where folks can have a vacation from cancer. Plans call for the 49-acre donated site to have a fully staffed main house with four to six family suites, catered dining facilities, a fishing pond, greenhouse, hair salon, serenity garden, and playground including a handicapped accessible treehouse. Folks can come for the day or the week.

“Whether you are just diagnosed or starting a new treatment or at the end of life, you need to give yourself a break,” says Barb.  (You can follow the project’s progress at www.hopeforcancerfamilies.org)

You also can create a mini-vacation from your illness right in your own home or town. Declare every first Friday of the month to be “Cancer-Free Friday” where you only watch funny movies and no one is allowed to mention the “C” word. Or ask a friend to plan an outing for the day—a scenic ride and a picnic, a mani-pedi and a tea room, or an afternoon hitting golf balls and eating BBQ. Ask yourself what would help your mind/your body/your spirit to take a vacation from illness. Pray about it and ask God how you or someone you know can make it happen. People cannot read your mind so let those who have asked to help you know what you really need.

You deserve a break today…and I’m not thinking McDonald’s.

I am sick at heart.
How long, O Lord, until you restore me? Psalm 6:3

When they walk through the Valley of Weeping, it will become a place of refreshing springs. The autumn rains will clothe it with blessings. Psalm 84:6

Adapted from Peace in the Face of Cancer, copyright 2017 by Lynn Eib
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(If the music video below doesn’t automatically load, click on https://www.youtube.com/watch?v=p9zEgRsorZ4 )

Apr 18

Who’s taking care of YOU?

 

Do you know what to do if you’re on an airplane and there’s a sudden loss of cabin pressure? Scream? Pray? Scream prayers? All good suggestions, but if you had paid attention to the flight attendant before takeoff, you would know to “secure your own oxygen mask first before you help others.” Related image

If you are a caregiver—either as a volunteer or professionally—for someone facing a serious illness, my guess is that you probably could do a better job of taking care of yourself. Putting on your own oxygen mask first, if you will. And if you’re the patient and not the caregiver, my guess is that you probably could do a better job of understanding what caregivers do and feel.

Thankfully, I’ve never been on a plane which experienced a sudden loss in cabin pressure, but hearing a diagnosis of cancer or some other life-threatening illness certainly has a way of making you feel faint. And the weeks, months or even years of caregiving which follow can leave anyone weary.

So I chatted with my friend Cynthia about the crucial but exhausting role of caregiver because: 1.) She’s been doing it for a really long time and 2.) She’s written a really helpful book on the subject called Cancer Journey: A Caregiver’s View from the Passenger Seat.

Cynthia says her role as caregiver to husband Jim has endured much shifting throughout his 15-year journey with non-small cell lung cancer. Cynthia Zahm Siegfried's Profile Photo, Image may contain: Jim Siegfried and Cynthia Zahm Siegfried, people smiling, eyeglasses

“I had a hard time initially getting him to be honest and express his needs…,” she explains. “He would try to make light of his symptoms or…minimize them when we talked to the doctor.

“I finally convinced him that wasn’t helping him or me,” she adds.

Because Cynthia has been a caregiver for so long—through nine lung cancer recurrences, one go-round with prostate cancer, multiple surgeries and countless treatments—I asked her how she finds the physical and emotional energy she needs to care for Jim.

“Find a support group and it’s better to be in one just for caregivers if you can,” she says. “Then you can really express yourself instead of both trying to protect each other.

“That first year (after diagnosis) I didn’t really do a good job of taking care of myself.” Cynthia admits.

But in the intervening years, she says she has tried to play tennis or do Pilates/yoga a couple times a week. She also joined a community singing group which always lifts her spirits, and together she and Jim find stress relief by watching comedies and reading humorous books.

I’ve been a caregiver for family members—either unwell physically or mentally—for most of the past three decades. I’ve had a relative with dementia living in our home for years and I’ve made bi-weekly seven-hour car trips for months to be with a relative undergoing chemo. I’ve been so physically fatigued I had to literally crawl up the second-floor stairs and I’ve been so emotionally exhausted I’ve spent hundreds of dollars so I could pour out my woes to a counselor.

Being a caregiver is incredibly hard. I get it.

Image result for love your neighbor as yourself

But I also know we make the job even more difficult when we fail to take good care of ourselves. Do you know what Jesus said the two most important commandments are? First, “Love God with all your heart, soul, mind, and strength” and second “Love your neighbor as yourself.”

Don’t miss those last two words: “as yourself.” It doesn’t just say to “love your neighbor.” It says we need to love ourselves. In fact, we can’t really love other people if we don’t love ourselves.

It is not selfish of you to do something refreshing, rejuvenating or relaxing for yourself. You cannot “fill up” your loved one when you both are running on fumes. Somebody is going to stall and get rear-ended.

The most loving thing you may do for your loved one today is to be good to yourself. If you can’t leave your family member alone, this is the time to call in one of those offers of help that others have made.  Watch a funny movie, enjoy a massage, go fishing, get a pedicure, take a walk, hit a bucket of balls, or catch a nap. Do something to lift your spirits so afterward you can once again lift someone else’s.

Adapted from Peace in the Face of Cancer, copyright 2017 by Lynn Eib
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(If the music video doesn’t automatically load below, click on https://www.youtube.com/watch?v=UUEy8nZvpdM

Mar 07

Helping Kids Cope with Cancer and Celebrating One Boy’s CURE

 

One of our church’s pastors, Matt, and his wife Carrie have been living in the shadow of cancer since December 2009, when their oldest child, Ian, was diagnosed with acute lymphocytic leukemia at the age of 3 ½ .

Matt vividly recalls the moment the doctor gave them the diagnosis. 

“Acute leukemia were not the words we expected to hear,” Matt says. “In my mind, I equated that (diagnosis) with death and I thought I was going to lose my son.”

Later that night after the frightened couple put Ian and younger brother Nathan, then 1 ½ , to bed they joined hands and “told God we fully gave Ian to Him,” Carrie recalls.

“We prayed for our marriage to be able to withstand the stress that was about to come upon us,” she adds.

Ian underwent six phases of aggressive chemotherapy over more than three years and was in and out of the hospital for treatment and its debilitating side effects.

I recently asked Carrie and Matt how they helped their young family, which now includes a daughter, Quinn, see God at work in the midst of this trial.

“We openly discussed our fears and when we felt alone and even distant from God,” Carrie explains. “We also served in our ‘cancer community’ by showing God’s love in practical ways to others who were suffering, too.”

A couple of years ago, Ian and his family loaded up their van to go out to eat and celebrate his third cancer-free anniversary. Carrie recalls:  “I noticed Ian sitting there with his eyes closed and hands folded. I wasn’t sure if he was praying, so I asked him if he was OK.”

“Yes,” was the young survivor’s reply. “I was just thanking God that I’m still cancer-free.”

On February 27, 2018–five years after Ian finished treatment– doctors officially pronounced the 11-year-old CURED! He and his extended family joyfully celebrated with a Disney cruise vacation.

 

Every year nearly 16,000 children in the U.S. are diagnosed with cancer and worldwide about a quarter of a million kids get that bad news. That’s a new child diagnosed with cancer every three minutes.

Statistics are not compiled for how many parents of minor children get cancer, but about 3.2 million of the U.S. adults diagnosed annually are ages 21-55 and therefore likely to still have kids at home. And that’s not even counting all of those cancer patients with young grandchildren.

However you add it up, there are a millions of families facing cancer with children.

So how can you best help the children in your life?  Fred Rogers has been quoted as saying: “Anyone who does anything to help a child in his life is a hero to me.”  So here are my recommendations written in an A- B-C style in honor of my hero, Mister Rogers:

  • Allow your feelings to be seen—even the sad ones. Obviously, it’s our job to help our children with their feelings, not vice versa, but if you want them to see how God is walking with you, you’ll need to share your struggles at times. It’s OK for children to know that sometimes we are afraid or angry or worried because then we can show them how a Christ-follower seeks God’s help with those feelings.
  • Be age-appropriately honest. Don’t tell all the statistics, but do use the word “cancer.” If you don’t, it may seem as if the word is too scary to even utter. It isn’t. Take away some of its supposed power by naming it as simply another illness. Sometimes when we don’t tell children the difficult truth, they imagine something even worse.
  • Create ways kids can give of themselves. Let them make cards or little gifts for the one facing cancer. Encourage them to pray specifically for that person every day. If the child is the one with cancer, follow Ian’s family’s lead and minister to others going through hard times. It’s so much easier to get our minds off our own troubles when we reach out to others.
  • Don’t make promises you can’t keep. We never told our girls “Mommy will be fine” because there was no such guarantee. We did promise them that the doctors would do everything they could to make me well, I would do everything to get well and that we expected I would become well.
  • Empower them by praying for them and with them—as in out loud and not just at mealtimes. Show them how to trust God even when we don’t like our situation. Don’t promise them that the one with cancer will be healed, but promise them that the One who created that person loves him/her with an everlasting love and will never leave them.

Facing cancer with children can be a wonderful first-hand lesson of the supernatural power of God in our lives. Help guide them to the path of peace as the Lord guides you there, too. The positive impact of this journey can be seen for generations to come.

Our children will serve Him;
future generations will hear the story of how the Lord rescued us.
They will tell the generations to come
of the righteousness of the Lord,
of what He has done. Psalm 22:30-31 The Voice Bible

Adapted from a chapter in Peace in the Face of Cancer, copyright 2017 by Lynn Eib.

(For parents with cancer, I recommend When a Parent Has Cancer: A Guide to Caring for Your Children by Dr. Wendy Harpham. For parents of children facing cancer, I recommend Chase Away Cancer: A Powerful Story of Finding Light in a Dark Diagnosis by Ellie Poole Ewoldt.)

If the music video doesn’t appear, use this link https://www.youtube.com/watch?v=Uy2EtG3UkL8

 

 

Oct 25

“Mother, PLEASE, I’d rather do it myself!”

  Anybody else old like me and remember the 1965 Anacin pain reliever commercial shown  here?  

I was a pre-teen when that commercial appeared on the screen of our little black-and-white TV (with the aluminum foil on the rabbit ears) and my mom and I thought it was hilarious. We would joke around and quote it to each other whenever one of us offered to do something for the other. But headache or not, I think most of us are I’d-rather-do-it-myself kind of people. That’s one of the reasons why it’s especially frustrating when serious or chronic illness hits us or those we care about. It’s not really in our nature to admit there’s something weighing us down and we can’t really fix it. How heavy is the load you are carrying these days? Are your arms weary from trying to hold up yourself or your loved one? Is your back breaking from the weight of medical bills piling up? Is your mind exhausted from trying to keep track of all the appointments and medications? Is your spirit feeling let down by the unfairness of life? Jesus has an exchange He’d like to make: your heavy burdens for His light one. Then Jesus said,”Come to me, all of you who are weary and carry heavy burdens, and I will give  you rest, Take my yoke upon you. Let me teach you, because I am humble and gentle at heart, and you will find rest for your souls. For my yoke is easy to bear, and the burden I give you is light.” Matthew 11:28-30 NLT

Notice He doesn’t promise to just take everything away so that we have no burdens? It’s as if right now we’re plowing through life as a single ox Image result for photo double yoked oxenwith a heavy yoke on our necks. When we give that big burden to Jesus, He comes alongside us, attaches His double yoke, and plows right with us.

No wonder our burdens are so much lighter and we are so much less weary! You don’t have to carry this heavy load by yourself. Lay down your I-can-do-it-by-myself yoke and allow Jesus to lighten the load as you walk side by side through whatever lies ahead.   Please enjoy this “oldie but goodie” song from 1975 by Chuck Girard, whom I had the distinct pleasure of interviewing back in the ’90s when he sang at Houghton College (and yes, I still own and listen to this album!). https://www.youtube.com/watch?v=LbLpncI4OvY    

Sep 06

Come sit in the E.R. with me

 

 

 

 

 

 

These halls are quiet on a Sunday morning with only the sound of monitors to echo in the silence of large emergency room.

Not this again. I am tired of this place.

It’s been a while since I’ve stood here, and yet it comes right back as if it were but a minute past. The too quiet of suppressed discomfort and fear, the too still of exhaustion, all mixed into the smell of sterility and latex.

“Are they going to do anything that hurts me, Mom?”

“No, son.” I hope not, son.

Chase is seven now. He’s five whole years past the first minute we heard the awful words “There’s a large mass”. He’s five whole years into his aggressive, malignant brain and spine tumors and his eye problems and his heart and hearing issues, and every other issue that seems to walk hand-in-hand with that cancer word.

Every time he is wheeled into the MRI, the news comes that his status remains “No Evidence of Disease”, but the magnetic resonance can’t quite pick up on the evidence of pain, suffering, brokenness, and exhaustion.

This Sunday morning, the rest of the family is at church and Chase and I, we sit in the darkened ER room not because he’s had a seizure, or a relapse, or even a headache. Oh no, we sit in this space because his face is swelling and it needs to be stopped. The doctor explains in matter-of-fact tones that the airways are crucial and swelling is sometimes bad for breathing.

And my balding boy’s face swells and grows some more against cheeks tinged pink with fevers because when you’ve had ten different chemotherapies and radiation and everything but the kitchen sink thrown at your body when you could barely walk, well, sometimes your immune system decides to go A.W.O.L. over a cavity. One little cavity that goes rogue and becomes an abscess and then suddenly we are sitting in the ER on a Sunday morning instead of going to church. Again.

I want to fight it. I don’t want this to be how the day goes.

And yet, isn’t this the way of it all too often when it comes to life and cancer? The big things are sometimes the easiest to accept because they just straight-up rob you of breath and heart beats and feel so inevitable in their “bigness”. It’s the little things like the port that occludes, the eyelashes that fall out, the random side effect or the ninety-seventh time to the ER that just wastes away at my patience and my faith. The little foxes in the vineyard of the faith marriage between my Savior and me [Song of Solomon 2:15] are beeping monitors, sticky IV needles, and the nurses who say “Okay, we just have one more set of questions for you here.” Make it stop, please Lord.

So many times I have prayed to be delivered from the awful repeat of the hospital day. So many times the answer is no. And quite a handful of times the answer is no and there’s more.

So many wild cards…

And yet, here’s the thing and don’t miss it…

Jesus is in charge of the wild cards. In truth, the wild is not wild to him. “To [God] the night shines bright as day. Darkness and light are the same to you.” It only looks upside-down and inside-out to us.

So where do you go when it’s the ninety-seventh hit in a row on your patience and faith is feeling really thin and worn?

I’m so glad you asked. Come sit in the ER with me – in these uncomfortable chairs – and we will review what we know to be true. Because I need to hear it again…and maybe you do too?

God is good even when He doesn’t do what we ask: “Three different times I begged the Lord to take it away. Each time he said ‘My grace is all you need. My power works best in weakness’.” [2 Corinthians 12:8-9a]

God sees things we cannot see: “Now we see things imperfectly like puzzling reflections in a mirror, but then we will see everything with perfect clarity. All that I know now is partial and incomplete, but then I will know everything completely just as God now knows me completely.” [1 Corinthians 13:12]

God is for us: “The Lord himself will fight for you. Just stay calm.” [Exodus 14:14]

And here’s why I lay these verses down again and again even though they hold no help for radiation-rotten teeth, and no cure for a 7-year-old desperately broken by a tragic disease. Here’s why: because I may never get the answers I want on this side of heaven. I may never see the healing I desire, the miracles I crave, and the next time I pray not to go to the ER, there’s a very real chance that I could end up with Chase admitted instead – because this is the way of the cancer world: two steps back for every one slow shuffle forward.

But this: God’s words are sharper than the sharpest scalpel and cleave through everything that holds us back from his love. And God’s promises are more tried and true than the best treatments the cutting edge of research has to offer. And sometime, someday, though the hair might fall, and the skin color fade, this word of the Lord is forever and ever, AMEN.

In Christ alone, our hope is found.

So wherever you are this week, whatever you’ve asked to be released from, whatever you just can’t possibly do one more time, actually, YOU CAN.

“For when I am weak, then I am strong”…IN CHRIST. [2 Corinthians 12:10]

Thank you so much for stepping into the ER room with me. Until we step into the throne room of our precious Jesus, and I get to meet you, we will take this life as it comes in grace… moment by moment.

 

TODAY’S GUEST BLOGGER is Ellie Poole Ewoldt, a wife, mother, daughter, sister, and friend. Her days are spent in the craziness of caring for four little kids, one of whom is a cancer survivor.  www.chaseawaycancer.com