Crutches for a Caregiver

Use those crutches - they help us keep moving!

Caregivers have to survive along with the patient.

Pudding.  Dora the Explorer.  Juice. Bambi.  Burritos.  Blankets.  Chemo backpacks. The Lion King. Ice Cream.

Crutches for a caregiver.

Crutches I thought I would never use!  But I used them for sure.  I used them often. Did that make me a bad mother?

I had always been a careful mother.  I oversaw every aspect of my children’s food, activities – everything.  As an educator I was careful with their screen-time, diet and bed-time.  I invited children to our yard to play, because I could keep my eye on my own kids better that way. I didn’t succumb to the temptation of using TV or screen-time as a baby-sitter.  Ice cream was rare.  Juice and pudding were treats.  Dora the Explorer?  I’d never seen it. We didn’t watch TV.

Having a four-year-old too weak to play, too lethargic to care, and too sick to eat spun my mothering ideals into a tail-spin.

Andrew’s medication tasted awful.  He was four so I ground it up and we got it down with pudding.  He was tired, but looked forward to Dora the Explorer during blood-draws.  Playing was out of the question, but a good dose of Bambi occupied him long enough for me to actually take a shower.

Burritos was the one food that trumped all other options and let’s be honest, I could hide one of his medications in that burrito.  I’d read that little ones drinking juice was a bad idea for their teeth, but water tasted pretty bad to my little guy and we worked to keep him hydrated.

Andrew had more blankets than anyone I’ve ever met in my life.  We used every single one.  He was extra cold, threw up often and we traveled to hospitals and clinics a lot – blankets made those trips bearable.  The chemo-backpack was started by my friend and added to often by other friends.  Toys abounded.  They had to be sanitized and switched out often in order to be of use.

Lion King was the funny movie Andrew wanted when he felt well.  And ice cream?  That was for those days when the medication was overwhelming and too much and the tears and the refusals had to be felt.  Ice cream was the reward for that nasty medicine going down all three times that day.  Ugh.

Where did my careful mothering go?  And did I do the right thing?

My mothering-style?  It went to survival mode.  Us mothers?  We have to survive.  Our most important job is to help our kids and our families survive.  Did I do the right thing to change the format of our lives?  Absolutely and I’d do it again in a second.

There is no “perfect” in caregiving.  There is no absolute “right” in mothering.  I hate all the stuff I see online – – the judgmental everyone-should-tolerate-each-other-as-long-as-they-do-it-my-way stuff that’s out there on social media.

Caregivers have to operate the best they can with what they are handed each day.  We have to use the tools at hand.  The patient needs to be comfortable, loved and taken care of the best way we know how.  But don’t forget this important part.

Caregivers have to survive this medical emergency too – it’s not just about the patient.

So do what you need to do to survive.  Use any and all crutches you can find,

And I’m just going to say this – my biggest, best and most stable crutch was not actually a crutch, but a foundation:

Jesus.  He’s the One that will get us through the difficulties.  I know I’m biased – but He is why I can sit here, on a Sunday, while my recovered Leukemia patient is outside shooting hoops!

Praise God for crutches.

A caregiver should use all the crutches available - and do NOT feel guilty! #caregiver #caregiving Click To Tweet

 


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Caregiver Loneliness Can Delay YOUR Recovery

Five Tips for Avoiding Isolation

loneliness

Take a Peek at Caregiver Loneliness

ICU minutes stretch like bubblegum—at some point, I know they’ll burst and slap more messiness into my life. I wait, lonely in the busiest place on the planet, for the nurses to allow me back into Pedro’s room. The tubes cascade out of his mouth, bringing life and hope that I won’t have to face the future alone.

***

Hospital minutes twang with anxiety—Pedro’s not in ICU any more, but nurses rush in on quiet feet each time I press the call button. Days have passed since he knew that I sit next to him, counting each breath and movement—hoping that this crisis will pass. The beeps of his vitals accompany my prayers. The loneliness presses in—squeezing hope into the corners.

 ***

I am on a highway, looking towards a bright future, yet time whizzes past me in a blur. I tend to Pedro’s needs during my lunch break, than hurry back to work. The four of us (Pedro, Laura, Sarah and I) relish his recovery, and long for time to regain its measured pace. Normalcy dances within reach, yet I feel lonelier than when minutes stretched like bubblegum.

The bills, the burdens, the new normal, all build an invisible wall between me and everyone else. No one understands the sheer panic a sneeze or a sniffle produces in my mind. No one understands the confusion of no longer living in panic mode.

I blindly hang on to the one constant from my journey. I know I have never been alone. Never been forsaken. But MY road to recovery is a lonely one. #caregiver Click To Tweet

Lessons Learned in Retrospect

Fifteen years have passed since Pedro’s stem-cell transplant saved his life. For him, recovery lasted about a year. For me? A lot longer. Cancer and other catastropic illnesses can act as blinders for the caregiver. We hyper-focus on the tasks at hand: taking care of our loved one, finding answers, and willing them to live. We forget that the world continues while we fight an isolated battle.

In retrospect, I would have done things a bit differently.

1). I would have found a support group for cancer caregivers.

I don’t know if they didn’t exist at the time of Pedro’s illness, or if I just didn’t see signs offering help. A few years after his recovery, I went to the same hospital and noticed posters all over the place for caregiver support groups. It would have been helpful to know that I wasn’t the only one having all the feelings that accompany caregiving.loneliness

2). I would have taken more interest in my friends.

Pedro’s illness took place before the advent Facebook and Instagram, so keeping in touch with friends meant phoning or writing letters. Nowadays, constant communication takes very little time and effort. You can take an interest in other people’s lives while you wait.

3) Make an effort to keep in touch with friends and family on a regular basis about non-caregiver related things.

This seems counterintuitive, because your world seems consumed by caregiving matters. But if you come out of the bubble, you’ll find connection with others that will help you when the crisis has ended and you return to normal life.

4) Don’t be afraid to ask for prayer for yourself.

I had no problems asking for prayer for Pedro and his specific needs. I had no idea that I could ask for prayer for myself. You can ask to join our Blessed (but Stressed) group of caregivers on Facebook. We pray for each other every Wednesday.

5) Acknowledge that YOU need time to recover, too.

Hopefully, if you take care of yourself during your journey (I didn’t), you’ll find that recovery takes less time. By staying connected with friends and family about non-caregiver related things, you won’t feel so isolated when your caregiving duties have ended. You’ll find it easier to resume activities that feel ‘normal’ to you, thus decreasing your sense of isolation and loneliness.

Know a Caregiver?

Do you know a caregiver?  Have you wondered if he or she might might suffer from caregiver loneliness?  What can YOU do to help? Don’t feel rejected if your caregiver friend seems distant and unresponsive. Keep reaching out! Caregivers suffer from loneliness but often don’t know how to express their feelings. They need YOU!


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Join the Club – Three Easy Tips for Caregivers

Carol

No matter how hard it feels to do – look for the perks of belonging to the caregiver club

It’s not an elite club.
It’s not a desirable club.
It comes with a very high membership fee.
No one ever requests to join.
But once you’ve been inducted into the club of Cancer Caregivers, you might as well participate fully. Even though it takes awhile for your head to stop spinning from the shock of the diagnosis, it’s important to jump into the caregiving role. No matter how busy you are at your full-time job of caregiving, plus your regular employment, plus your responsibilities as parent, spouse, outside of the caregiving role, our advice to you is Join the Club!

 

 

1. Make it a priority to participate.

Children’s hospital facilities often organize parent suppers or get-togethers to form a sort of parent-support group. Sometimes I felt that I did not have time to go, but when I went it was so nice to be with a group of people that were sharing my journey…who knew what questions NOT to ask, who knew what subjects were OK (it’s only in this group that it’s OK to talk about bodily fluids), and who might have more experience than you do at what you’re doing.

2. Take advantage of offers.

Sometimes, charitable groups offer benefits to cancer patients and their families. Candlelighters, a helper group for families of children with cancer, offered our family the chance to take a jet-boat river cruise for a day outing with other children-with-cancer families. They had offered other things over the years of fighting cancer, but often we could not participate because of travel distances or work commitments. This day on the river was a joy – and it was so touching to watch other cancer-kids in different phases of treatment, living their lives as “normal as possible” under the circumstances…choosing to live with joy for a day. It was good for my boy to recognize that other kids were in different stages, some bald, some healed, some still struggling—he felt like he was in a group where he belonged!

3. Be brave and share.

I remember standing outside the entryway to the children’s cancer ward, staring out the window, feeling very alone and overwhelmed. A lady stood down a ways and after awhile I noticed she had the same blank stare out at the beautiful scenery that I had. I felt a little shy, but she looked like she was hurting. I tried the line, “You come here often?” She smiled and told me of her son, back for his umpteenth hospital visit in a long fight with brain tumors. I told her of my son’s fourth hospital visit in a new fight against leukemia. We didn’t really offer any advice, we didn’t hug or make a lifetime friendship, but for just a moment, our burden was lightened because we were not walking alone.
What ‘club benefits’ have you found most helpful?


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We All Learn in Different Ways

(And We'd Like to Help You Out!)

differentDifferent Ways to Learn

The professor of educational psychology class at a university intoned, “We only learn by practicing—by actually doing something.” I shook my head in disbelief.

differentI raised my hand (I can’t keep my opinions to myself, sometimes). “So, you’re telling me that if I drove down the road, and see the vehicle in front of me bottom out in a pothole, I don’t have a different choice? I will have to go through the same pothole in order to learn that going through potholes could damage my car?”

“Hrrrum,” the professor replied. “What would you do in this situation?”

“Something different!” I exclaimed. “As a rational, thinking, relatively observant human being, I would swerve to avoid the pothole.”

“Um, yes,” he replied. “Good choice for your car. But we’re talking about the psychology of learning.”

“Agreed. But if I observe someone else making a mistake, and make a different choice with a better result, did learning take place?” Obviously, the professor (a young man in graduate school), had no siblings. Every second or third child understands the benefit of learning from the oldest sibling’s mistakes!

Our Gift to You

Carol Bovee and I have had some crazy experiences during our different cancer caregiving journeys. We’ve gone through some potholes along the way that damaged us because we didn’t take time to care for ourselves.

We’ve prepared a free book for you to help you negotiate your own caregiver journey (or tell a caregiver friend about the book!). Learn from our mistakes, without having to make them. We want you to experience a different journey—one where you come out the other end with fewer bumps and dings.

You can find the link to the free book up there in the right-hand corner. You’ll receive a free PDF of Cancer Caregiving 101: How to Survive and Thrive on Your Caregiver Journey. You’ll also receive a short series of emails that let you know about other aspects of our caregiving community.

Even if you don’t care for someone with cancer, you might find the stories inspirational and helpful in your own caregiving journey. Remember, if you know a caregiver, please pass this information along. We’d love to help others learn from our mistakes!

Get your FREE copy of Cancer Caregiving 101: How to Survive and Thrive During Your #Caregiving Journey. #selfhelp #cancer Click To Tweet

Get the FREE book!





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A Caregiver You Know Might Need This Book

Dr. Bengtson Releases a Hope Prevails Bible Study Guide

BengtsonNot Knowing That I Stood in Need

When my husband miraculously recovered from non-Hodgkin’s Lymphoma with Central Nervous System involvement I knew I should feel grateful and blessed. I did, mostly. But a heavy blanket of depression crept over me and sucked the color out of my days. I felt as if an angry monster lurked inside, ready to lash out at any moment. I had no idea that I needed something.

It took me awhile to acknowledge that perhaps I suffered from depression (after all, shouldn’t I feel blessed? Which just made me feel guiltier and more depressed). At the time, I found a good resource that helped me understand my feelings and start traveling out of the darkness.

I wish I would have had Hope Prevails Bible Study: Insights from a Doctor’s Personal Journey Through Depression by Dr. Michelle Bengston. Not only has Dr. Bengston traveled through depression, she has experienced seasons of caregiving as well. In fact, her husband received a cancer diagnosis on the day her first book, Hope Prevails: Insights from a Doctor’s Personal Journey Through Depression launched last year. Dr. Bengston knows first-hand how caregiving can wear a person down and how maintaining a positive attitude of hope plays an important role in a caregiver’s life.

Dr. Bengtson graciously answered a few questions about the unique challenges that caregivers face.

What lies do caregivers need to be aware of both during and after a loved one’s illness?

Dr. Bengtson: Caregivers need to be aware of the lie that somehow our loved-one’s well-being depends on us. It doesn’t. God has them in His hand and He cares for them so much better than we ever could. We just need to cooperate with Him.

We also need to be aware of the lie that will scream that their healing isn’t permanent. Only God knows. So, we rejoice in the promise that God says that by His stripes we are healed. We don’t know if that will be this side of heaven or not, but we thank Him that God’s ways are best.

Caregivers also must be careful to guard against the lie that says that more we do, the better off they will be, or that no one can care for them as good as we can. We need to take time to rest ourselves so that we can care for them. And sometimes resting means delegating or allowing others to step in and help.

As a cancer caregiver yourself, what extra advice would you give a caregiver who struggles with hopelessness?

Dr. Bengtson: As a caregiver, we have to be careful to guard against hopelessness. We have to be careful not to let anxiety have a place in our mind. One of the best ways to do that is to repeat God’s promises out loud, such as Psalm 39:7 “”But now, Lord, what do I look for? My hope is in you.” and Isaiah 40:31 “but those who hope in the LORD will renew their strength. They will soar on wings like eagles; they will run and not grow weary, they will walk and not be faint.”

Go to Him. Share your burdens. He wants to help you carry them. He wants to be your strength. You do not have to go through this alone. Even when friends and family do not understand, he does!

Who Needs Dr. Bengtson’s Book

If you act as a caregiver to someone, I strongly recommend that you read this book as preventative maintenance! Traveling through a caregiving journey calls for extra fortifications—something this book provides. If you know a caregiver, consider giving the book to them as a gift. Often times caregivers look fine on the outside, but inside they feel lost and abandoned. The easy-to-use and understand Bible study takes the reader on a journey of hope. I found the play lists of hope-filled songs especially helpful. Dr. Bengtson has curated a wide variety of Christian music artists to help lift the listener’s spirits throughout the day.

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Submersion or Submission: Which would you choose?

How a caregiver can prevent "drowning" or going under, when struggling to keep afloat

We have a choice as caregivers: accept help or drown!

In the fifth part of our series on how caregivers seem to experience the same reactions to circumstances that a drowning person experiences, we explore the options a drowning person has–submersion or submission.

“From beginning to end of the Instinctive Drowning Response people’s bodies remain upright in the water, with no evidence of a supporting kick. Unless rescued by a trained lifeguard, these drowning people can only struggle on the surface of the water from 20 to 60 seconds before submersion occurs.” On Scene, The Journal of U.S. Coast Guard Search and Rescue

Drowning:

Overwhelmed. Depressed. Struggling. Devastated. Overpowered. Shocked. Overcome. Distressed. Swamped. Drained. Exhausted. Scared. Confused. Done in. At the end of the rope.

All caregivers know these words.

No matter how brave we want to be – no matter how brave we ARE, there comes a point in a caregiver’s journey where we just feel like we can’t go on. We KNOW we must be going under.

For some, that point might come out of the nowhere and smack us when we think we’re doing great. For others, that point might creep up on us; we know it’s coming, but we don’t know what to do about it—except just tread water for all we’re worth until we cannot struggle any longer. For some, “the point” might last for a few moments of desperation. For others, that point might become a new way of life that terrifies us with it’s ceaseless reality.

The point of submersion hits us all.

The waters will close over our heads: Unless a “trained lifeguard” comes to our rescue.
A caregiver’s network of ‘trained lifeguards’ includes caring people who know how to spot signs of distress. Many of us cling to a Higher Power. Most of us receive offers of help, but we feel unsure of how to balance things. Some of us feel that we wouldn’t be doing a great job as caregiver if we relinquished responsibilities.

I am a trained lifeguard. In our training and practice for water rescues (especially deep water or water with currents), the most important training involves knowing what to do with those drowning victims who resist rescue efforts—the people that fight (out of sheer panic) our efforts to help.

Lifeguards learn to approach with words, so that the drowning person knows we want to help. We practice gripping the victim firmly and continuing to talk, if we can, so that the victim understands what we are trying to do. But often people panic anyway, sure that both rescuer and victim will drown in the overwhelming waters.

Lifeguards learn that sometimes we will have to keep our distance and let the victim lose energy so that we can rescue them.

Carol dries out after rescuing a girl from drowning in Trujillo, Peru in 2010.

I rescued a child once, in a pool I was not familiar with and therefore did not know the water’s depth. At first, the frightened girl struggled in my arms and tried to “help” me kick, but her futile efforts took us both under water several times. I ordered her, in a rather stern manner, to lay back and let me carry her—to let me do the work—and I promised to get her over to the edge. For me, the edge was only about 10 feet away and I knew I could get her there with no difficulty. For her, the distance seemed insurmountable, and she had no idea of my swimming ability.

In the end, she clung to my arm, which I held firmly around her, and she relaxed, until I boosted her onto the edge of the pool. Her mother thanked me with tears while I sat in the sun, drying my clothing so I could continue my day.

I felt blessed; I had been able to use my training to help someone survive.

While I was a struggling caregiver, desperately trying to hold my head above water, but feeling that with each submersion it took me longer and longer to reach the surface, a friend told me that I was depriving others of the blessing of helping me, by trying to be so strong and to do everything myself. I was a good “swimmer”, but even the best can only swim for so long before they need a helping hand.

Don’t keep “struggling on the surface until submersion occurs”:

Let others around you gain a blessing by helping. #caregiver #caregiving #blessedbutstressed Click To TweetSubmit to the lifeguards that hover nearby. Don’t submit to submersion!

If you’re a caregiver, have you ever had to submit?  How did it make you feel?

If you’re someone who loves a caregiver, do you have any tips on helping out a frantic ‘drowning’ caregiver?

 

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31 Ways to Nurture Yourself for Caregivers

nurture

The Importance of Self-Care Increases with Caregiving

If you spend time caring for someone else, you need to make sure that you spend thoughtful time caring for yourself. This month on my other blog, I’m writing a series on 31 Ways to Nurture Yourself. So often people tell caregivers, “Take time to take care of yourself,” but in the stress of caring for someone else, caregivers can’t figure out what exactly that means.

You can find ideas, as well as the psychology behind self-care and self-nurturing over at www.anitaojeda.com.

A fellow caregiver, Karen Sebastian, also has a great series (this one designed especially for caregivers), called the ABCs of Self-Nurture for Caregivers.

Julie Steele has a series about mothering one’s self. You’ll find great ideas for self-care.

Tammy McDonald has a series on grief that might interest you, too.

If you do nothing else today to care for yourself, take the time to visit one of these series and glean some great ideas on how to take care of yourself! Remember, if you don’t take care of yourself, you won’t have the energy and patience to take care of someone else!

If you don't take time to care for yourself, you won't have the energy and patience to care for someone else. #caregiver #selfcare Click To Tweet
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You Might be Drowning in Plain Sight

Drowning and Caregiving

Sometimes caregivers are drowning in plain sight!

Drowning victims and caregivers share more than one might think. In this five-part series we explore the phenomena of “Drowning in Plain Sight.”

As you read, whether you’re a caregiver or someone who loves a caregiver, think about the people in your ‘pool’–is anyone drowning?

“Except in rare circumstances, drowning people are physiologically unable to call out for help. The respiratory system was designed for breathing. Speech is the secondary or overlaid function. Breathing must be fulfilled before speech occurs.” Characteristics of the Instinctive Drowning Response–On Scene, The Journal of U.S. Coast Guard Search and Rescue

The doctor adjusted his stethoscope on my back and told me to take a deep breath. I breathed in, and sat, not paying much attention to what was happening. The stethoscope didn’t move. “Again,” he ordered softly.

I let out the air I’d been holding and took another breath while my mind skipped to what I needed to grab from the store before I headed home from this appointment.
The stethoscope still had not journeyed to a new spot.

“Carol,” he reprimanded, “take a de-e-e-p breath!”

I reached deep and breathed properly. This I could do. My life might be falling apart and things running out of control, but I could breathe deep. I’m a flute player. My flute teacher used to make me practice breathing and taught me how to breathe deeply from the abdomen. I drew a deep breath and found that my air seemed to have nowhere to go.

I pretended to myself that all was normal and waited for the stethoscope to go to the next spot.

The stethoscope dropped while the doctor felt along my back.

What was the deal? He’d only listened to my breaths at the top of my back, that wasn’t normal, was it? Oh really. Who cares? I wonder if I mixed Andrew’s nasty medicine with chocolate pudding, would that help him get it down? Swallowing posed the problems…pudding is soft, maybe he could get it down that way. Oh, and besides the pudding, I should get some shaving cream. Karina needed to study her spelling words and writing in shaving cream is a fun way. Yeah, and my grades are due next week, so while she’s practicing spelling, I should get those tests graded. Man, I wish this headache would go away.

“Have you ever had asthma?” the question came out of nowhere.

“Asthma?” Was he kidding? “No, I’ve never had asthma. My breathing is fine—I’ve never had any problem.”

Silence.

“Why, is there a problem?” I finally thought to ask.

“Well, Carol. If you don’t have asthma…then…you’re not breathing.”

I laughed out loud. “I assure you I’m breathing. I’m alive.”

He smiled kindly and explained to me that the muscles in my back felt like the slightly atrophied muscles of an asthmatic patient; showing signs of not breathing deeply enough. I sighed and the very act of doing so proved to me that this doctor was way off.
Not breathing – who ever heard of that. Of COURSE I was breathing.

One has to breathe to live.

The beautiful water belies the silent drama…

He explained more fully that while he was listening, I took a decent breath, but then half the time forgot to let it back out. I needed to practice breathing by taking in big breaths, holding it to the count of three and blowing it – hard – all the way out. Then push even more out if I could. I was holding too much in.

Brother! I’m holding too much in, all right, but it’s not air. It’s panic, it’s fear, it’s responsibilities, it’s life.

But breaths? I was doing fine!

I left the doctor’s office slightly miffed that I hadn’t gone in for breathing issues at all, yet he’d spent valuable time obsessing about my breathing.  Frankly, the doctor had scared me a little bit with his pronouncement about my back. This was the same doctor who kept telling me I needed to get some help; to stop carrying things on my own and to allow people to give me some relief. The same doctor who had, just the week before, reminded me that in order to keep caring for my leukemic boy I would need to eat a little better, drink more water and maybe begin exercising.

Again I snorted with disgust. Like I have time to exercise and eat better…I’d like to see him get up at 3 to get to chemo and return home after dark and still get Larissa to her club meeting and read with Karina and get papers graded. Drink more water? That’d be great, but who has time to count drinks and really, I’d just have to use the bathroom more often. But yeah…we all know those health rules and just as soon as I could, I would follow them like I used to do.

All the way along the one-hour highway route my mind berated that silly doctor who could never just treat what I was asking for, but continually reminded me of taking care of not just my sick boy, but me. My thoughts bounced around wildly like they had come into the habit of doing, and I drove steadily onward. Suddenly breath gusted out of my mouth as dizziness hit.

Whoa. That was weird. I think maybe I was holding my breath while I was thinking!

No, one doesn’t just hold a breath – no one thinks about breathing, they just do it and it works! It’s natural! I continued homeward, thoughts flying in a different direction. Out of nowhere another breath blew out. Oh my goodness, my shoulders are up and I had been holding my breath!

Catching myself holding my breath three more times on the way home convinced me that, indeed, my life had become so crazy that I was now holding my breath, along with my shoulders and my fears, in an effort to accomplish more than I could handle.
I had quit reaching out to friends, feeling that I didn’t have time.
All the things I most enjoyed doing I had given up in an effort to help my kids be “normal”.
I had quit walking in the morning, using that time to get a head start to my day.
I was no longer doing all the things to take care of myself, in order to care for my family.

And I was no longer breathing. 

Have you ever found yourself ‘not breathing’ and unable to communicate with others about your inability to breathe?

The series continues with Breathing Lessons.

Have you ever found yourself not breathing? #blessedbutstressed #caregiver Click To Tweet
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Take Care of Yourself: Six Ways to Avoid Caregiver Burnout

While still caring for your patient

In the middle of taking care of our loved one, we often don’t take care of ourselves.

Cancer Caregiving 101: Take Care of Yourself and Prevent Caregiver Burnout

When others offer to entertain your loved one, take time to go for a walk or relax by yourself–DON’T do housework!

“Now you must realize,” the doctor straightened the papers into the already thick folder as he finished summarizing the diagnosis, treatment protocol and prognosis, “with a best-case scenario, we’re in for a long haul. You two must take care of yourselves, too. This is not easy on parents, either, and you can’t let yourselves get run down.”

The nurse bustled into the room, loaded with scary looking objects which she unloaded in the room’s small bathroom. “So, you cannot touch this hat in the toilet, we can’t have his samples contaminated. Also, be sure you don’t let any urine touch you when you help your little guy go – because it will burn a hole in your skin.” There followed some more directions of what not to touch in the room and what not to do and what I needed to help Andrew with and what I needed to remember. As she breezed back out the door, having set these little traps all over the room, she paused in the doorway, “Mrs. Bovee, you need to remember to take care of yourself through this…this will be a long, tough road.”

After a two-week stint in the hospital with a feverish and neutropenic boy, I was home, frantically trying to

recuperate the family from separation, restore the house from chaos and prevent the laundry piles from taking over the world. As I sorted and started a load, a neighbor followed me from washing machine to dryer, not helping, but faithfully entreating me that I needed to “take care of yourself! Carol, you are just working too hard! You need to let go!”

I stumbled along beside the gurney as we returned from the spinal tap, wiping my tired eyes and unsuccessfully hiding a yawn behind my hand. The nurse, pushing a dopey Andrew, smiled sympathetically at me. “Carol, I hope you’re taking care of yourself. We see so many parents pushing so hard. You’ve got to take time out. Don’t forget you’ll need to recharge your batteries too.”

We received that advice throughout Andrew’s treatment. “You parents need to take care of yourselves too.” “Remember that you can help your boy best if you’re taking care of yourself too.” “Take some time for you!”

Great advice.
Perfect!
Ideal.
Laudable recommendations from caring souls.

“Don’t lift that boy – he’s too heavy for your back!” – OK, but he’s four, sick to his stomach, neutropenic, tired…I’m supposed to tell him he’s on his own?

“Don’t worry about the housework, take care of yourself.” – OK, but I cannot have a sick boy around dirt…is someone going to clean it for me?

“Make sure you eat regular and healthy meals!” – Ok. But the procedures are always during breakfast time, recuperation through lunch, driving through supper and falling into bed. When was I supposed to eat? And what in the world is a ‘regular time’?

The job needs to be kept, the house needs to be clean, the kids need to be loved, the meals need to be fixed, the sick one needs to be cared for – when, exactly, was I supposed to “take care of me”?

Truly, all I could concentrate on, throughout my son’s illness, was him! It wasn’t until it was too late, and I was in trouble, that I realized what I had done to myself. So the question I hear, from so many caregivers, is this:

HOW do I take care of myself, when my primary job is to take care of him/her? (tweet this)
I’m probably the last person to take advice from, as I did not necessarily do it right. On the other hand, maybe I’m a good person to listen to—I can honestly look back over my journey and say that there are things I would do no differently even if I could have known exactly what I know now. I would still give 150% to my child and my family.

However, there are some things that I wish I could go back and change, or do better:

1. Delegate the little things as much as you can: you cannot delegate the worry, no one else can carry your pain and your patient might not want you to delegate personal care. So delegate the windows being washed, the lawn getting mown, handing someone your money and your shopping list, etc. Delegate as much as you can. Sometimes that means swallowing your pride, but it might help you avoid swallowing medication later! ☺

2. Make lists. If someone offers to help – have a list ready of things they might be able to help with. If you have nothing you can think of right that moment (I remember someone offering to help while we were waiting for Andrew to come out of a procedure – nice, but not where my brain was right that moment), then write their offer down and get contact information and ask if you could call on them sometimes.

3. Ask. Don’t be afraid to call your pastor or a neighbor or a co-worker and let him/her know of a need. A lot of people think we caregivers have it all under control and don’t think to even ask if there’s a need. But many would help if they knew of a need. One person said to me, “It’s OK to allow someone else to have the blessing of helping you.” I had never thought about it that way before, and that was releasing to me.

4. Be willing to let go: sometimes, we caregivers think we need to be superman and wonder woman all rolled into one. We can’t. Or maybe, like in my case, I could for a while, but sustaining that after a while becomes impossible. Take the help that’s offered. And also let go of how that help is done. It might not measure up to your standards – but it will probably work!

5. Search out quiet moments. The days of caregiving are often busy and hectic, and when they are quiet, they can be scary. Grab moments of quiet to journal or to process some of what’s been going on. Take those moments to evaluate how you’re doing and how you’re feeling. Is it time to get some help? Do you need to find someone to talk to?

6. Expect less of yourself. This one has nothing to do with others’ helping, and everything to do with you deciding that it might be OK if you don’t get things done. Maybe you need to say no to some things you used to do. A caregiver has to re-examine priorities; and in that re-examination, one of those priorities has to be you. Your sanity, your health, your ability to keep on going.

It IS possible to take care of yourself, even while taking care of your loved one! #InspireMeMonday #caregiverburnout Click To Tweet

What ways have you found to take care of yourself?

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What You don’t Know About Breathing Can Really Hurt You

breathingLosing My Ability to Breathe

Somewhere, between diagnosis and deliverance, I forgot how to breathe. I find myself, at odd moments, holding my breath, not in anticipation or fright, but simply because I have forgotten the rhythm of breathing.

I didn’t even know about my loss until I started experiencing horrible, unexplainable pain in the middle of my chest that isn’t a heart problem (checked that), isn’t a nerve problem (checked that too), or even a lung problem (checked the bellows out and they’re fine).

“You’re as healthy as a person half your age,” the cardiologist told me. If that’s true, why does it hurt to breathe or have my heart beat strong and deep?  Why does my left side swell up?  It hurts to lie down, or stand up?  Why does it happen over and over again?

“Your breathing function is normal,” the internist told me. “In fact, your lung capacity is superior.”  Than why does it hurt to breathe?  Why can’t I take a deep breath without agony?  Walking up stairs is a cruel form of torture.

“Have you ever considered acupuncture?” my family practitioner asked me. Really?  Alternative therapy?  I couldn’t believe a physician was suggestion alternative therapy.

“Well, I do go to a chiropractor and a massage therapist,” I admitted.

“Does it help?” she asked.

“I’m not sure.”  I shrugged. “Sometimes it helps the pain go away if I go in early, sometimes it doesn’t. My massage therapist claims that I have incredibly tight muscles on my left side. It takes her an hour to work through the knots.”

A Different Kind of Specialist

“Do you know how to breathe?” my neighbor and friend asked me. She’s a life coach, and helps people with chronic pain—she’s also a person in chronic pain. “I can teach you how to breathe.”  I reluctantly agreed to go over to her house after work one evening (after my second job–I much rather would have been in bed).

“It’s called diaphragmatic breathing,” she told me. “Put your hand right below your rib cage and try to push your hand out when you breathe.”  I felt silly, but I tried it. “When you breathe shallowly, you decrease your body’s ability handle pain.”

“Really?”

“Yes.”  She launched into the technical reasons why shallow breathing keeps a person from processing pain and releasing endorphins that help the body take care of pain. I thanked her and wandered out of her house, hand on stomach, practicing my breathing while thinking of breathing in general.

Over the next few weeks, while I waited for my pain to go away, I caught myself not breathing. The computer didn’t load fast enough—I clenched my teeth and my breathing ceased its regular, steady rhythm. Three family members with perfectly good hands and arms and backs failed to put their own dishes in the dishwasher—how hard can it be to bend slightly and put a dish in the dishwasher?  I got cut off on the highway—have they stopped giving driving tests?!  Ooops!  My teeth were clenched and I had been holding my breath for who-knows-how-long.

Caregiver, Beware Your Breathing

Somewhere, between diagnosis and deliverance, I had started holding my breath—in fright, in anticipation of the next piece of bad news, in mental pain and agony, in emotional stress. No one ever warned me that a side effect of all that stress would be a loss of breathing. In fact, no one warned me about any of the side effects of a cancer diagnosis. Slowly, every so slowly, I’m putting a name on them and dealing with them. For now, I’ll start with breathing lessons.

 

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