All Those Comments

Which voice will be yours?

We’ve all heard them – those cringe-worthy comments that are delivered with care, but little experience or understanding.  Those phrases that slap a caregiver upside the head and leave one reeling with hurt, confusion and a struggle with faith.  Those sentences that are well-meant but not well delivered.

“God must have needed you to slow down.”

“God is just looking for a chance to provide a miracle.”

“If you just have enough faith he’ll be healed.”

“If you spend an hour every morning in prayer…”

“If you would change her diet…

“I have the perfect home remedy for you, you know those medicines are evil…”

“Have you searched your heart for that un-confessed sinf?”  And I hear the unspoken:  “because obviously your four-year-old doesn’t deserve this so you must have done something.”

These kinds of comments fling themselves at caregivers more often than you’d think. They, along with other pat answers and common consolation phrases jump out of a mouth and crawl around in our heads and there are moments that we want to beg for someone to just BE there.  To listen.  To cry.  To laugh.  To go out shopping.  To provide a book.  To sit with the patient.  To smile.  To understand.

That’s community.

My sister lost her son in an accident years ago, but every time she meets another mother struggling to walk through life without a child, there is an instant connection, usually involving a hug and some tears.

A friend has a daughter with traumatic brain injury.  She has new friends undergoing the same struggles with a child or sibling or spouse.

My mom is coming up on the year anniversary of my dad’s death, and she goes out to eat with some widow friends and sometimes they talk about their spouses, but other times they say nothing at all about it.

I have a new friend, because her son was diagnosed with leukemia in the first week of school (just like mine) and the similarities were haunting.  We bonded instantly, but I find myself without words now, because her boy lost his battle with cancer.

A friend had a miscarriage a couple of years ago and wrote her story.  The response is huge, all voicing the need to know they’re not alone in their pain.

Anita’s husband is the miracle. Pedro is the one who made it, against all odds, but it has taken Anita time to get over the effects that caregiving creates.  She and I developed a bond over the phrases, “Don’t you wish someone would have told us?” and “Can you believe someone actually said that?”

I also have the miracle.  My healthy 16-year-old son, while still struggling with some remnant effects of such strong drugs for so many years, is doing great.  Oddly, and much against my will, I still find myself wanting to talk about it, or hearing the word leukemia and shuddering, or nodding in sympathy when hearing of anxiety attacks or the inability to sleep because of caregiving.

When I meet another parent of a leukemia patient, we have no shortage of words, understanding nods and hugs.

This is community.

This blog is created for community.  We each need a place to know we’re not alone and to hear that we did NOT create whatever catastrophe has struck our loved one.  We need to know that we’re not crazy when we can’t sleep and weight gain (or loss) is typical and somehow, some way and some time, we will be okay again.

November is National Caregiver’s month.  We are looking for guests to share their journey.  Let someone know your story – it might be similar to theirs and you might become that understanding nod, that smile or that hug that someone needs.  Sign up to share YOUR STORY here.  You might be that voice telling a caregiver that they’re not crazy and definitely not alone!

Be the voice to create community with positive comments #caregiverconnections #caregivermonth Click To Tweet

 

Inspire Me Monday Instructions

What’s your inspirational story? Link up below, and don’t forget the 1-2-3s of building community:

1. Link up your most inspirational post from the previous week.

2. Vist TWO other contributors (especially the person who linked up right before you) and leave an encouraging comment.

3. Spread the cheer THREE ways! Tweet something from a post you read, share a post on your Facebook page, stumble upon it, pin it or whatever social media outlet you prefer–just do it!

Please link back to this week’s post or add the button to your post so that we can spread the inspirational cheer :).

 Loading InLinkz ...

Hope for Caregivers Found in Hope Prevails

Hope Prevails (but it Took Me Awhile to See That)hope prevails

If you’ve ever read the ‘About’ section of this blog, or seen my bio on my twitter account, you’ll know that I call myself a ‘recovering cancer caregiver.’ If you have ever gone through a season of life where a family member has contracted a life-threatening disease or experienced a life-threatening accident, you know what I mean.

When the season of caregiving has ended, many caregivers find themselves wading back into the ‘real’ world wondering how to cope with mundane tasks and decisions. The adrenaline that has pumped through your body for days, weeks, or months in response to the stress of your loved one’s condition doesn’t know how to turn itself off.

The ensuing emotions, thoughts and feelings can produce post-traumatic stress-like symptoms in the caregiver, along with feelings of guilt (even if the one you cared for survived), and yes, even depression. I’ve been there. Maybe you have, too.

After my first caregiving journey, I feel into depression. If you would have asked me at the time, I would have denied the depression (after all, I should have been bubbling over with joy because of Pedro’s miraculous recover).

(more…)

Caregiver Self Care Tip #1–READ!

Reading Self-care tip #1

If you’re a caregiver, you might find yourself with a lot of empty time waiting for things to happen.  From an early age, I learned to fill my empty moments with books, and during my caregiving seasons, I always escaped for a little self-care with a good book.  For the first time, I actually kept track of the books that I read during an entire year. I can’t promise that I remembered to log every single title—but think I did!

For the first time ever, I listened to audiobooks. I did a significant amount of driving over the summer, and I discovered that audiobooks keep me awake on long solo drives (they also almost caused me to run out of gas a time or two when I found myself so immersed in the story that I forgot to look for gas stations). I ended up listening to 11 audio books over the course of the year.

If you’re a caregiver, you might find that listening to audiobooks provides a great escape; you might even discover that listening to an audiobook with the person you care for provides a double benefit of entertaining both you and the one you care for.

#Caregivers might enjoy listening to audiobooks along with the person they care for. Click To Tweet

When I first purchased a Kindle reader six years ago, I didn’t think I would use it that often. Now, I don’t use it all—but I do use the Kindle app on my phone and iPad and I read 45 of the 64 books on my list via an electronic device. I love electronic readers because I only spent $20.00 on those 45 books. Many of them cost nothing or under a dollar (I subscribe to BookBub.com which sends a daily email with free or inexpensive books for electronic readers in categories that I choose).

Believe it or not, I only held eight actual books in my hands—a far cry from the girl who baked and sold whole wheat bread so she could purchase her very first book (Justine Morgan Had a Horse by Marguerite Henry back in 1976). After moving so many times (and often into small living spaces), I understand the value of having an electronic library. Now that I’ve upgraded to trifocals, I find I can read on my phone screen just fine—and that means I’m never without a book.

I discovered that I have a difficult time picking favorites, because so many of the books I read had great merit. I present to you the list of favorites from all that I read in 2015:

Biography
Unbroken by Laura Hildabrandt—This book caused hours of angst and wondering if poor Louis Zamperini would ever get out of prison camp. I have a whole new appreciation for all those who serve in the armed forces—especially those who have spent time as prisoners of war.

Emperor of all Maladies: A biography of Cancer by Siddhartha Mukherjee—I listened to this one on audiobook. I now have a greater understanding of the history of cancer and how fortunate we are that Pedro is alive—I couldn’t believe how recently many of the cancer therapies have been developed. If he had received his diagnosis even five years earlier than he did (2002), he probably wouldn’t be alive today. Yet, we have so much more to learn and discover in treatment, prevention and curing the disease.

Jacksonland: President Andrew Jackson, Cherokee Chief John Ross, and a Great American Land Grab by Steve Inskeep—this book might carry the title of Jacksonland, but the hero of the book is John Ross, Principal Chief of the Cherokee Indians during the years surrounding President Andrew Jackson’s acquisition of millions of acres of land belonging to Native Americans through shady treaties and the subsequent signing of the Indian Removal Act.

Thunderstruck by Erik Larson—I love books by Erik Larson, and this biography of the original wireless inventor (Marconi) combined with how the development of the invention helped catch a murderer makes for intense reading.

The Black Count by Tom Reiss—The Count of Monte Cristo holds a place on my (virtual) shelf of all-time favorites. Tom Reiss chronicles the amazing life of Alexander Dumas’ father—whose life story reads almost like one of his son’s adventure books. Alexander Dumas (the father) is one of the few black men revered in French history for his part in the Napoleonic wars.

Dead Wake by Erik Larson—another great book—this one about World War I, British wartime intelligence and the sinking of the Lusitania. I learned a lot about early submarines and Woodrow Wilson along the way.

Missoula: Rape and Justice in a Small Town by Jon Krakaur—every parent should read this book. You can read the review I wrote about it here.

Autobiography
An Unquiet Mind by Dr. Kay Jamison—this book provided just what I needed in a time of great need—information about bipolar disorder. Everyone should read it. We need to stop the stigma surrounding mental illness—and the only way to do this is through education.

The Glass Castle by Jeannette Walls—I’ve read this book three times—two times out loud to my senior English class. I edit the language as I read to them, because the author remains true to the truth and doesn’t edit her father’s words or actions. The kids all have a copy of the book, so they can read those choice words for themselves, but I’m not comfortable reading them out loud. Despite the language, it’s a beautiful story of overcoming the odds, loving the odd-balls in one’s life, and turning out ok despite one’s upbringing in poverty and neglect.

Brain on Fire by Susannah Cahalan—my daughter lent this book to me, and I couldn’t put it down. It’s an autobiography and medical mystery all rolled into one. Once again, knowledge is power, and we should always educate ourselves!

Religious/Self Help

The Hidden Half of the Gospel by Paul Coneff and Lindsey Gendke—this book is for anyone who has ever felt inadequate, misunderstood, slighted, suffered from abuse or trauma. It’s also for anyone who knows anyone who has suffered—so I guess it’s a book everyone should read.

Fiction
I read a wide variety of fiction books. What appeals to me depends on my mood, so I love the free ebooks because I’ve discovered so many new authors to fit all of my reading moods.

Suspense
Freefall and The Edge of Recall by Kristen Heitzman—if you love edge-of-your-seat suspense with characters who have questions about faith, you’ll love Kristen’s books. She also has a great historical series.
The Blood of Innocents by Amanda Holland (Beta)—this one isn’t out yet, but I predict that it will be within a few years.  It won the ACFW First Impressions contest for 2015 for the suspense/thriller category.  It’s a great detective story—you can find more about Amanda on her Facebook page.

Literary
Sycamore Row by John Grisham—I love a good John Grisham story, and this is one of his best.
Go Set a Watchman by Harper Lee—you can read the full review here.

Contemporary
Juliette and the Monday ManDates and Renata and the Fall From Grace by Becky Doughty—I got the first one free through Book Bub, and ended up buying the second one. Funny, thought provoking and honest with real characters that struggle with real problems of faith and living out their convictions.

Historical/Inspirational
The Princess Spy, The Huntress of Thornbeck Forest and The Golden Braid by Melanie Dickerson—I love Melanie’s books. They are listed as YA (young adult) inspirational fantasy—code words for fairy tales retold from a Christian perspective for an audience of historical fiction lovers from nine to 99. These are great gifts for the young ladies on your gift list.
After a Fashion by Jen Turano—the author does a great job of blending historical fact, hilarious scenes, well-developed characters and a touch of romance. I’ve loved all of the books of hers that I’ve read.
Fair Play by DeeAnn Gist—I’ve loved DeeAnn’s books since I first started reading them when I moonlighted in a Christian bookstore. They always make me think about my relationships with God and with other people but are never heavy-handed. The historical details and well-rounded characters show her talent for research and understanding of the human condition.

Oldies but Goodies—These books don’t cost a penny (wait, I may have paid a couple of dollars for Crimson Roses because I’ve read it before and wanted to read it again), and I just love them. I’m a sucker for old-fashioned anything, and I love Grace Livingston Hill’s books (her print books always make my moving cut).
Crimson Roses and The Obsession of Victoria Holt by Grace Livingston Hill—I read this book every couple of years because it inspires me to treat my male students as if they are rational human beings who just need a sympathetic champion to encourage them to do what they already know is right.

I’ve read and enjoyed Louis L’Amour books for the last 27 years (Pedro introduced me to them), but I had never read a western by Zane Grey. Once again, I can blame Pedro. He read a few last year and he told me that I’d enjoy them. He was right. They were all free and I ended up downloading five or six of them.  My favorites include, Riders of the Purple Sage, The Rainbow Trail (these two are a series) and Betty Zane (a biography of his grandmother or great grandmother) by Zane Grey.

As a teacher, I’m always on the lookout for awesome books for my students. The two books that really stood out this year were Blink & Caution by Tim Wynne Jones and Touching Spirit Bear by Ben Mikaelsen. Both books are on the gritty side—don’t give them to your teenager to read until you read them first. Blink & Caution took a few chapters to get used to, because one of the characters speaks in second person (eg “You walk into a hotel and you make it to the elevation without anyone seeing you”). Tim Wynne Jones writes from Canada, where he has earned numerous awards. This book will make you rethink homeless kids. They all have a story. All too often we look down on them or pity them but don’t really do anything to understand them.

Touching Spirit Bear deals with anger and what happens when the justice system takes a different approach to dealing with angry kids. Once again, you’ll rethink how we deal with justice and wish we could change things in our system.

I’m always on the lookout for new books to feed my reading addiction! What do you recommend?

How to Deal Proactively with Caregiver Pitfalls

One of the pitfalls of caregiving is unjust accusations

One of the most recent heart-wrenching situations I faced was with my mother—there were so many conflicts within conflicts, twists, turns, ups, and downs. At that same time, peace, hope, strength, and joy showed up at the most unexpected times. Proverbs 18:10 states, “The name of the Lord is a strong tower, the righteous runs into it and is safe.” I kept repeating it many times during that time. Now, I suggest you sit back, buckle up, and hold on tight while I describe this long journey.

My mother, the youngest of three girls, graduated with a Bachelor’s Degree and Master’s Degree in Music, and was an exceptional master elementary reading teacher for 38 years. She and my dad were married for 43 years until his death in 2008. She was chronically ill for several years, battling diabetes, arthritis, kidney disease and other maladies. She became seriously ill in March 2012. I decided to move back home to take care of her (I’m an only child) and I insisted that she get a caregiver.

Her caregiver, a wonderful man, taught me a lot—from fitting diapers properly, to using the Hoyer lift, to reading the hospital machines. We are still close friends to this day. When he came to the house on one occasion (I don’t remember if this was his first time or not), he couldn’t lift her by himself, so he called the local police department and they sent a policeman to assist in lifting her to take care of her personal hygiene. This didn’t happen on a daily basis. She was hospitalized for 3.5 weeks, followed by a four-month stay at a long-term acute-care facility (LTAC), and then she spent two months in rehab. What happened next I would never wish on my worst enemy, but I thank the Lord Jesus Christ for carrying me literally through it, holding me, protecting me, loving me through every facet of the process. I really learned what it meant to trust in Him completely, just to give it all to Him.

On April 19, 2012, Mom called the ambulance to take her to Methodist Hospital, and the dispatcher told her they would take her to that hospital. She wanted to go where her doctors are located, but in our county, the ambulance will only take you to two hospitals (neither of which was the hospital that she wanted to go to). That was never clarified to my mom over the phone, which I never thought was fair.

When the paramedics arrived, they were rude and unprofessional. Two of them didn’t know how to lift my mother from her power lift chair to their stretcher. Her caregiver had to instruct them on the best way to place her on the stretcher. When lifting her onto the stretcher, they made horrible comments about her having bedsores and soiling herself and her clothes. Before they came, we tried to clean her up, but she insisted on being left alone. One of them asked if I had seen the bedsores. I had never seen any bedsores before, and I didn’t know anything about it. He implied that we lied about them, and thought she was being abused. When they placed her on the stretcher, her legs were red (cellulitis), and part of the lady EMT’s watch scratched up against her left leg, leaving a long scrape. Of course, they omitted that part in their report. They transported her to the hospital.

After I arrived in the ER room, my mother told me one of the ladies said that my mother had been abused, but my mom emphatically told the lady she wasn’t abused. Later, four women dressed in red and black uniforms kept asking me intrusive questions about myself and my mother, but they wouldn’t tell me who they were, or who they represented in the hospital, and what was wrong with my mother. Later, I discovered they were with the wound care center, and they were treating my mother’s bedsores as burns. Her primary care physician finally arrived to check on her, and she told him about me. After he examined her, I heard one of the women behind the curtain say, “Did you see the daughter, she’s fidgety and nervous?” After three hours, they formally admitted and stabilized her, and I left the hospital. When I arrived home, a caseworker from Adult Protective Services (APS) had left a message for me to call about my mother.

I immediately fell on my bed and cried out to the Lord. My friend and I began to pray fervently about this situation, and her husband (an OB/GYN and attorney) advised me to go to the APS office in person, make a statement, and fully cooperate with them. I called the caseworker and gave her my prepared statement, but the conversation didn’t bode well.

I thank Jesus for delivering me and providing divine intervention. Isaiah 41:9-10 says, “I took you from the ends of the earth, from its farthest corners I called you. I said, “You are my servant”; I have chosen you and have not rejected you. So do not fear, for I am with you; do not be dismayed, for I am your God. I will strengthen you and help you; I will uphold you with my righteous right hand.” I would repeat that and read it aloud sometimes several times a day. You cannot look at the circumstances, and listen to what people are saying or doing, especially if it goes against the Holy Spirit. He knows the truth, and He will vindicate you in His time; Jesus never leaves us, whether we find ourselves standing on the mountaintop or perched below in the deep confines of the valley.

The APS caseworker called my mom’s caregiver, and it turned out that they both graduated from the same high school, and knew each other very well. He explained everything that transpired on that day, the dosages and side effects of all 10 medications my mom took, and explained that the policeman who assisted him in moving her from her power lift chair did not observe any bruises or wounds on her. In addition, my mom had a urinary tract infection, was delusional when she was talking to us, insisted we not clean her up, and told him her sister was there helping her at home. She told him my aunt was in the house helping her get ready for her doctor’s appointment, and was outside raking the leaves in the yard. I told her caregiver that was virtually impossible because my aunt was in an Alzheimer’s special care unit facility.

The caregiver has an excellent reputation in the community, and the caseworker completely believed Mom was in the best of hands. My mom adored her caregiver. In addition, he also explained how the EMTs handled placing her on the gurney, and that one of the EMTs had scratched my mom’s leg with her watch. Then, the caseworker told us the hospital thought my mom had been whipped, animals were scratching her, and she was being burned. They were going to press charges against us both. I knew none of these things were even remotely possible; she wasn’t a dog person and didn’t like animals in the house. The caseworker came out to the house, looked around, and saw there were no whips or animals.

She talked to my mom at the hospital, and she emphatically told the caseworker she wasn’t abused, and they didn’t have any business contacting APS. The caseworker has to follow protocol. The next day the caseworker contacted her supervisor and informed him there was absolutely no evidence to substantiate the hospital’s claim of abuse. Her supervisor signed off on the paperwork, and the hospital immediately dropped their claim. GLORY TO GOD! THANK YOU JESUS!!!!

At times, this caregiving journey is an extremely difficult and frustrating one, you are never alone, and God is with you every step of the way. He loved me through all the pain, turbulence, and gave me beauty for ashes; he’ll do the same for you. Isaiah 61:3 says, “To all who mourn in Israel, he will give a crown of beauty for ashes, a joyous blessing instead of mourning, festive praise instead of despair. In their righteousness, they will be like great oaks that the LORD has planted for his own glory.” Jesus is indeed at the center of it all!
Here are some practical, proactive tips for avoiding caregiver pitfalls when you care for a familing member in your home:

1. Stay close to Jesus. Find Bible verses and cling to those portraying Him as your Anchor. Pray every day.
2. Document things in writing. Write down names of those who visit, those who provide care (and what service they provide). Keep an easy-to-fill chart on a clipboard that has a column for the date, time, name, service, and contact information of everyone who comes into the room.
3. If someone accuses you of abuse, make sure you know exactly what the allegations are, what entity is making them, who is making them and their job title, what specific action or attitude do they consider a “red flag.” Request all medical records from every facility.
4. Take care of yourself. Practice self-care, which includes eating three healthy meals, sleeping regularly, taking care of personal hygiene daily, and talking to someone who can be an advocate and a soft place to fall.
5. Seek legal counsel to discuss your options.
Laura Jackson, an educator and school counselor in public education and case manager in the non-profit sector, writes from Prairie View, TX. She loves finding humor and positive ways to approach issues in the counseling world. If it isn’t relevant, inspiring, or funny, then people will change the channel. She has a special interest in encouraging and helping others to succeed. She understands the pitfalls and problems with caregiving through her experiences taking care of her mother and aunt. Currently, she is a second year doctoral student in Christian Counseling and Psychology at Louisiana Baptist University and working toward LPC licensure. Contact her at laura5713@sbcglobal.net.

Inspire Me Monday Instructions

What’s your inspirational story? Link up below, and don’t forget the 1-2-3s of building community:

1. Link up your most inspirational post from the previous week (just ONE, please).

2. Vist TWO other contributors (especially the person who linked up right before you) and leave an encouraging comment.

3. Spread the cheer THREE ways! Tweet something from a post you read, share a post on your Facebook page, stumble upon it, pin it or whatever social media outlet you prefer—just do it!

Please link back to this week’s post or add the button to your post so that we can spread the inspirational cheer :).

I found inspiration for my Monday at #inspirememondays. Join us! (tweet this)

So, go ahead! Take the plunge and share your most inspiring post with us!

 Loading InLinkz ...

Children Are a Gift From God

My daughter became my caregiverUntitledWe named her Mikaela, meaning a gift from God. And that she is.

Not only because we finally had a little girl after three boys, but also the joy that she has been to us every single day of her life. She has always been mamma’s little helper, but she amped it up big time when I fell ill four years ago.

Mikaela was about to turn 15 when I was suddenly struck with chronic pain. It happened one Sunday afternoon, as I lay down to rest. A severe pain shot through my back. I couldn’t finish lying down, nor could I raise myself back up. The slightest move would cause contracting pains across my lower back. I spent a month flat on my back.
From the start, Mikaela began to help out. She made and brought me protein shakes for my meals that first month since I was unable to rise up off of the bed. But even as I began to improve with medical help, she continued to serve the entire family. She took on preparing all the meals, doing the grocery shopping, doing the laundry, and virtually running the household.

This was, as you can imagine, a great help to not only me, but to my husband as well. Being a pastor, Michael had to continue serving the church along with caring for me… visiting the sick, dealing with church business, and preparing sermons and planning for three services a week. I had served as church secretary up to this point, so he took on a lot of my work as well. Without Mikaela’s assistance, he would not have been able to accomplish this for as long as he did.

My hat is off to all caregivers that are trying to care for a loved one and be the bread winner as well. I’m not really sure how anyone does it. We could not have done it without the love and support of friends and the understanding of the church board when I was first sick.

The most amazing thing about Mikaela is that she gave up her entire high school years to care for her momma (and really, her daddy too). While we did manage to get her to the DMV for her learner’s permit, it was 3 ½ years before we got her back there to actually take the road test. She had plenty of practice though. She became my chauffeur as I improved and needed someone to drive me to therapy at the YMCA and run errands. She became an excellent help in assisting me in and out of vehicles, up and down steps, or just extra support when walking distances. And she did all this without prompting or without complaining. She is always thinking of my care in every decision she made. Even for just a trip down stairs for a snack, she would pop her head into my room to see if I needed anything.

But the most amazing thing about this beautiful young lady is that she basically gave up her high school experience to serve her family. We were homeschoolers. In some ways, this was to our advantage because she didn’t have to leave home and go to school, but then she was at home and missing socializing that we would have had at the homeschool co-op. Mikaela was totally self-directed. She stayed right on top of her studies and finished remarkably well. And she did it all while cooking, cleaning, and planning for the family. This meant she spent most, if not all, of her time at home—caring for the family. There was precious little time out with friends, or going to games or movies, if not for her brothers who would take her out on the town.

Michael and Mikaela-the author's two gifts from God.

Michael and Mikaela-the author’s two gifts from God.

All this and more is why I want to share this with you. There are not many teenage girls today that would do all this without grumbling or whining. Mikaela has been so gracious and uncomplaining. I really don’t know how we could have made it this far without her.

She is truly a “Gift from God.”

[UNSET]GGMandy is a farmer’s kid turned pastor’s wife. Growing up she swore to never marry a farmer nor a pastor; however, in God’s irony, she married Pastor Farmer! Along with her husband she has served in the Church of the Nazarene for the past 26 years. She served many years in children’s ministry and recently in women’s ministry, especially mentoring young adult women. Her husband has just recently taken an early retirement. The GG is her name stands for many things. As a farmer’s daughter, she is Gene’s Girl, as a pastor’s wife, she is a Gracious Guide, as a grandmother, she prays she is a Godly Grandmother.
GGMandy has been struggling with chronic pain for the past four years. She is an encourager who now gives her time to encouraging others on two blogs, Leaving a Legacy and Raised in a Barn. Her daughter, Mikaela is a recent high school graduate and a blossoming musician. She taught herself the guitar and led her youth group in worship for four years and is now trying her hand at music and Vlogging. You can get a taste of her style at KaeZanne, leave her a word of encouragement while you are there.​​​

 

 Loading InLinkz ...

Bringing Hope to Others With Cancer While We Wait

LarissaWaiting with Expectation Means Bringing Hope to Other

When I took my wedding vows I never really thought the “in sickness and health” part through all the way. I guess I just assumed that would come later in life – like when we were in our 60s or 70s. However, sickness arrived when my husband was 44 years old—while deployed in Iraq.

When I first heard the words “they found a mass” I was totally wrapped up in myself—and our future move from Okinawa to Oahu. As a Marine spouse I felt like all I had experienced had made me tough. That was until I first heard my husband being diagnosed with a leiomyosarcoma—this was going to require a whole new level of toughness. Before the official diagnoses the hubs named his mass T.I.M. for The Inconvenient Mass. I couldn’t stand the word mass so the hubs got creative and T.I.M. was named. The naming of the mass was just the beginning of the humor that has gotten us both through the past four years.

I never really saw myself as a caregiver—I am a wife to a very independent Marine who had been benched for a short while before T.I.M. was removed in 2011. I lived in cancer-free bliss, on the island of Oahu, and enjoyed our last tour to the fullest. I am grateful for the time God gave us thinking “we” were cancer-free. I knew the statistics and that T.I.M. could come back—science said there was a 40% chance. However, we would catch it in its infant stage and fight it early. Or, so we thought.

I wasn’t prepared for what the second diagnosis brought. The cancer was discovered in the unlikeliest of places. And, it wasn’t following sarcoma protocol—it had the nerve to come back in several places this time. Though I was caught off guard, our Mighty God was not.

We got a second opinion this time and so we take the five-hour trek to Houston every two months to get new scans and discuss the sarcoma’s growth. Right now B.O.B (Blobs on Bill) is growing at an unimpressive rate—so we wait. We wait for two months to pass. And then we wait for the results. And then we wait to hear what the specialist has to say. Then we drive back home and we wait again.

And in those waiting periods life goes on. Life goes on after a cancer diagnosis. People move on after they think you are ok. And yet, I don’t get to move on. I am in a two-month holding pattern.

I have noticed that God is using these two-month stretches of time to grow me. To show me that I can lean on Him and that He is still in control. He has not moved on though family and friends have. He cares about me. The weird part about waiting is living and moving forward while waiting. Life has to go on. Bills still have to be paid. The dogs still want to eat. Monday, Tuesday, Wednesday still come around just as Thursday, Friday, Saturday and Sunday do as well. Holidays come and go. In the midst of this waiting I lost my mother to cancer. In the midst of waiting I have taken a girls weekend. I wrote 31 days in a row on “Doing Community Well”, while waiting. In the midst of waiting I take care of my husband. We nap every day. Exhaustion is his only “symptom” right now. I am resting while I am waiting. I am praising God while I am waiting. I am enjoying time with my girlfriends while I am waiting. I co-lead a women’s Bible study while I am waiting. We open our home every Wednesday night to our Life Group while we are waiting.

One weird reality right now is that I am a caregiver to a mostly healthy person. Both the hubs local oncologist and the specialist at MDA say that he is the healthiest cancer patient they have. And, so, we wait!

Someone asked me recently what my ministry was and it dawned on me that my ministry is my husband. And my/our ministry, as a couple, is to shine brightly in the dark world of cancer. We bring hope in with us wherever we go.

Our ministry is bringing hope to others with cancer (and their #caregivers) while we wait to see what happens next. Click To Tweet

Romans 15:13 (NIV) “May the God of hope fill you with all joy and peace as you trust in him, so that you may overflow with hope by the power of the Holy Spirit.”

My ministry as a caregiver is to walk into MD Anderson with my cancer patient and I smile and hug others when I get a chance. I talk to other patients and caregivers since I am the extrovert in our family. I share about how we are trusting God during this “terminal” waiting period.

1 Chronicles 16:8 (NLT) “Give thanks to the Lord and proclaim his greatness. Let the whole world know what he has done.”

People without cancer give us weird looks. Or ask a ton of questions. Or any variation of looks and emotions and questions. Cancer families just know. They understand the waiting. We actually wait and laugh and make jokes about cancer together. It’s our coping mechanism. It gives us a break from the reality of what we are facing. And it makes all the sitting in waiting rooms so much easier.

I see this current season in my life as a privilege to serve my husband and others and I pray daily that He would be glorified through me! I am waiting and I am praying. And I am waiting with expectation for my God who is faithful.

Psalm 5:3 (NIV) “In the morning, Lord, you hear my voice; in the morning I lay my requests before you and wait expectantly.”


LarissaLarissa Traquair is a blogger, volunteer and C.I.O. (Chief Inspiring officer) of the Gr8tful Tribe on Facebook and on Periscope. She is known as the Gr8tful Chick on all her social media outlets. She is a mom to a pair of adopted bulldogs and has been married to her Marine for 22 + years. They are retired in Texas now and trusting God through the transition from active duty to retiree all while dealing with a cancer diagnosis. She loves all things paper –scrap booking (Project Life); stamping; and paper planning. She also loves dark chocolate and doing lunch with girlfriends. She shares gratitude, her love for food, and what God is doing in her life over at www.thehouseoftraquair.blogspot.com. She currently serves on the social media team of a military ministry called Planting Roots where she can be found coordinating their Periscope Broadcasting schedule among their 21 member volunteer team.

Inspire Me Monday Instructions

What’s your inspirational story? Link up below, and don’t forget the 1-2-3s of building community:

1. Link up your most inspirational post from the previous week (just ONE, please).

2. Vist TWO other contributors (especially the person who linked up right before you) and leave an encouraging comment.

3. Spread the cheer THREE ways! Tweet something from a post you read, share a post on your Facebook page, stumble upon it, pin it or whatever social media outlet you prefer–just do it!

Please link back to this week’s post or add the button to your post so that we can spread the inspirational cheer :).

I found inspiration for my Monday at #inspirememondays. Join us! (tweet this)

So, go ahead! Take the plunge and share your most inspiring post with us!

Take a moment to visit Angie, the other hostess, too!

 Loading InLinkz ...

Only You Can Determine if Caregiving is a Burden or a Blessing

You get to choose your attitude

Only you can choose whether caregiving is a burden or a blessing!

My Story is Your Story

My life has been marked by many events. which if I am honest, made me who I am today. Life lessons abound and are interspersed with several periods of putting my plans on hold in order to care for others. During the 31 day writing challenge, I read many posts about caregiving and the journey these people traversed to get to where they are now. I am intrigued by their stories and my heart feels deeply for them. Until recently, I did not understand that the words I read are ones that mirror parts of my own story.

2 Cor 9-7

As I struggled to balance a two week period recently, where my dad was in the hospital and his apartment needed to be cleaned out before the end of the month, I had a conversation with one of my brothers. I voiced concerns, frustrations and finally named my struggles with these words, “I am a caregiver.” He didn’t patronize me or downplay all the feels I was feeling at that moment. He came alongside and acknowledged this truth. I had never spoken these words out loud to anyone before this.

I am blessed by a wonderful family who cares deeply for each other and willingly supports a member when needed. But, they all live out of town and when you are craving a physical presence to sit next to you in silence or in shared words, reality reminds you that you are alone. Caregiving, when alone, takes on a new level of staying strong and leaning on the one who you can always count on – God!

[Tweet “Caregiving, when alone, takes on a new level of staying strong and leaning on God.”]

Throughout my life, I have played the role of caregiver. My first experience was caring for my former husband, who endured one physical problem after another. I learned quickly that caring for young sons, as well as a husband, was a full time job. However, I already had a full time job as a teacher. I carried an “I am fine” persona with me at all times and from the outside looking in, I had it all together. I still wear a strong outer shell as a result of my years of living life through the challenges as well as the joys. This last experience with my dad is creating a softening of my heart and a deep desire to not just care for someone, but bless them with my time.

My brother spoke truth into my heart during that phone conversation and his wise words have stuck with me. He changed my perspective of caregiving by saying he looks at it as a way to serve a loved one. My attitude of trying to get it all done while remaining strong, is slowly falling apart, one piece at at time. I can choose to bless someone with the gift of time or carry the burden of feeling like my time is not my own. There is nothing easy about either choice, but God loves generosity and presence.

6 Remember this: Whoever sows sparingly will also reap sparingly, and whoever sows generously will also reap generously. 7 Each of you should give what you have decided in your heart to give, not reluctantly or under compulsion, for God loves a cheerful giver. 2 Corinthians 9:6-7

You might also be in a position of caring for someone that feels burdensome at times. God is cheering for you as you give the gift of being present. Perhaps, like me, you did not even recognize that the role you were playing was caregiving. It took me many years and one conversation with my brother to understand I was a caregiver. We need to embrace the positions God calls us to in our lives. This little blip along the road will be used for God’s glory, when we see the blessing of time that is inherent in caregiving.

I am slowly learning to bless others with a cheerful heart, knowing that my time is not really my own. We belong to God and giving of our time, serving others, or blessing all with a smile is building God’s Kingdom. A blessing that in turn blesses you more in return.

View More: http://kimdeloachphoto.pass.us/allume-mary

Mary Geisen is the mom of two amazing, grown sons. She is blessed to be a retired 3rd grade teacher and a woman seeking God in the ordinary routines of life. Lover of the beach, coffee and long walks outside are coupled with a love of reading. God’s story for her life blossomed into written words that begged to be shared with others and then her writing journey began. The power of God’s words has inspired her journey of healing and drawing closer to God through the power of grace.

Join Mary on her grace journey by connecting with her on Facebook, Twitter, Instagram and Pinterest.

Forgiveness and Caregiving Create Amazing Changes

Caregiving and ForgivenessMy mom died before she grew old, I was thirty-nine. She was gone before my daughters, Jessica and Caitlin, graduated high school and walked down the aisle. I never thought I’d spend the last half of my life without her.

It was Thanksgiving 1998, her diagnosis came as a shock to all of us. Mom’s primary care doctor said she had hepatitis and told her to go home and rest. However, she didn’t get better. Testing confirmed she had pancreatic cancer and just two weeks later she had surgery to remove half of her pancreas. She then started a long process of chemotherapy.

My mother was miserable. Food no longer tasted good, she couldn’t keep it down. She was so tired. I took her to her doctor’s appointments dreading the answer to the question we didn’t want to ask, “How much time does mom have?” We hadn’t spent our time well together and now it was fading fast and I didn’t want it to end.

Soon after mom received the diagnosis, she let the wall down, the wall that keeps us from being real. She shared her deepest regret, which was looking the other way when my step-father was heartless and cruel in his choice of words. She cried and I cried and she told me how much she loved me. As she lay dying, she tried to make up for lost time and past mistakes.

I helped mom sell her house and she moved into a little bungalow around the block from us. For the first time in their lives, my daughters experienced what it was like to live near grandma. They rushed to her home after school to help her wash dishes or rake leaves in the yard. Mom taught Jessica how to bake. They watched television together and she laughed at their stories about school and first boyfriends.

About a year after surgery, mom could no longer live alone. We moved her into our house, into the spare bedroom at first. When she needed more assistance we moved her into the living room and set up a hospital bed near the large windows in the living room.

I watched my daughters care for her. Caitlin brought her water, tissues, and books to read. Jessica sat on the edge of her bed and they talked. My daughters were learning to nurture others through caregiving for their grandmother.

Mom treasured her oldest friendships, her grade school and high school friends and the women from the neighborhood where I grew up. They were like family and they visited her regularly.

Mom’s co-workers, young and old, kept scheduled visits on a calendar so one or two were there each day. They played cards, brought her special treats, and shared office gossip. We set up a jigsaw puzzle near the front windows and watched the snow fall.

Spring came early that year and I was thankful for it. We welcomed the warm rays of sun coming in through the front windows. Mom could watch from her hospital bed the rhododendrons and azaleas begin to bloom. Gray squirrels scurried around on the brick planter to gnaw on corn cobs. Our gray and white cat, spent most days curled up at the end of her bed.

Mom’s health declined steadily and one day her friend Grace held my hand and said to me, “Nancy, it’s time to tell your mom it is okay for her to go. Tell her you’ll be all right.” My aunt and brothers came to my house that Sunday, it was Mother’s day. They each had some time alone with mom. It was bittersweet knowing it would be the last time we would celebrate this day. Never again would there be a reason to buy hanging planters filled with her favorite Fuchsias. Sunday brunch at Budd Bay Café wouldn’t be the same without mom.

I sat with my mom longer that night, well after my daughters had gone to bed. I knew mom could hear me, I didn’t know how much she understood. By then she was using a pain pump, pressing a button to self-administer pain medication as needed. Her breathing was labored and her face looked thin. Through tears I said goodbye. I told her how much I loved her and said “I always felt loved by you. We’ll be okay mom, it’s your time to go.”

The following night, not more than a couple hours after I had gone to sleep, I sat straight up in bed and knew something had changed. I walked into the hall and before I entered the living room I heard it – the quiet of the night. I had gotten used to the sound of mom’s labored breathing, but now the house was silent.

Walking slowly to her bed, her body was still and the light had left her eyes. I sat down, unable to move. After several minutes, I called my brother and my mom’s friend and asked them to come. It was midnight when staff from the funeral home got to my house, I was surprised at how quickly it was over.

I don’t remember much about the following weeks. The memorial service was at our church. I wanted to speak but the words didn’t come. I went home to a quiet house and looked around and realized I had lost my way. I kept busy working and being an involved parent but life was passing me by. I didn’t want to reach the end of my life carrying the burden of regrets.

It was then I opened my Bible and began searching for answers I knew I would find there. An older woman at church became my spiritual mentor and I learned what it was like to work through past hurts and use those experiences to grow into the person God planned for me. I had to experience the emotional pain of losing my mom in order to reach a point of needing my Heavenly Father.

Taking my mom in to live with us during the last months of her life was the right thing to do. If it had it to do all over again, I would do it just the same. My daughters saw by example, this is what you do for those you love. I still remember mama.

Nancy GNancy Gladwin is a writer and artist. She writes for her two beautiful daughters and you! She blogs at Timeless Truths. She is grateful for her husband, Greg, and God’s unconditional and unfailing love. When she isn’t writing or studying God’s word, she is making memories with her twin grandchildren. She loves to explore the woods and water of the Pacific Northwest. “May the words I write resonate in your heart and point to God our creator who gives us hope.”
 

Battling Resentment in Caregiving

battling resentment during caregivingIn celebration of National Family Caregivers Month, we’re sharing the stories of other bloggers and caregivers. Today guest blogger Barbara Haper writes about the resentment she sometimes feels as a caregiver and offers some practical tips for battling resentment.

Seven years ago we moved my mother-in-law 2,000 miles away from her home to live near us in an assisted living facility. Her declining condition eventually took her to a nursing home, where she dwindled down to 90 lbs. We brought her to our home so she could pass away peacefully among family. However, she responded well to one-on-one care, gained weight, and has been here for over two years.

I’ve experienced a gamut of emotions since being involved with her care. Happiness that she was cared for and that our family could spend more time with her. Gratification to be able to give back to someone who had poured her life out for loved ones. Sadness from her decline, the loss of the person we knew, the knowledge that she’s going to get worse, planning funeral arrangements. Frustrations over staff members not adequately taking care of her, family members not keeping in touch, not being as available for my son’s family during his son’s NICU stay as we would have liked, the effects of dementia though knowing she couldn’t help those things. Dislike of the physical aspects of care-giving (some are natural caregivers: I am not). Weariness over the everyday aspects and wondering how much longer we can do it. Pressure from the needs of family, work, finances, and other obligations. We’ve felt like the ham and cheese of the sandwich generation. We've felt like the ham and cheese of the sandwich generation. #caregiver #dementia Click To Tweet

But the one I’ve wrestled with the most is resentment and its accompanying guilt. What is there to be resentful over? Though I love and miss our kids, I had looked forward to empty nest opportunities. I’ve felt “tied down” as we can’t go out without paying ($17 an hour here) for an aide to stay with her (her needs are too specific for just a friend to stay). While I appreciate hospice services, so many people coming through my home invades my introverted sanctuary. Sometimes they don’t call before they come or don’t arrive when planned, disrupting schedules. When my mother-in-law was in facilities, a 40-minute round trip there might find her either repeating conversations or too groggy to talk. We’ve had to set aside social functions, personal projects, and even ministries in order to take care of her.

Over the years I’ve found a number of helps from the practical to the spiritual that help me in battling resentment during my caregiver journey:

Taking care of one’s own health and sleep needs. Everything looks worse when you’re tired or run-down.

Talking with someone. Not bashing or complaining, but just being able to discuss the situation helps.

Getting away even for short periods provides a little respite.

Taking a day at a time. God gives grace and strength for the moment.

Remember what brought us to this place. As we trace our history with my mother-in-law’s care, we come to the same conclusion, that this is the best situation for her at this stage.

Remember that caring for a loved one at home used to be the norm before assisted living facilities and nursing homes became widespread, and it still is in some countries.

Remember her care of her family for so many years, and look at this as an opportunity to repay her love and care.

Think how we would want to be regarded and treated if we were in the same situation.

Pray. Sometimes, before going into my mother-in-law’s room, I pray I might be “Strengthened with all might, according to his glorious power, unto all patience and longsuffering with joyfulness” (Colossians 1:9-13). I need His strength, longsuffering, and patience, He has the power to help me to go beyond acting out of duty to enable me to serve with joy. I frequently pray that He will help me have a more loving, unselfish heart. Hebrews 4:16 promises we can find grace to help in time of need at God’s throne.

God has the power to help a #caregiver go beyond acting out of duty and enabling us to serve with joy. Click To Tweet

Remember truth: It is God’s will that we take care of our parents in their old age (Exodus 20:12; Mark 7:8-13; 1 Timothy 5:4, 16), whether in our home or a facility. If our spouse needs care, we vowed, “in sickness and in health, for better or for worse.” Our child’s care is our responsibility.

My time, life, schedule, home, hopes, plans, and dreams, are not mine. They’re God’s. They were surrendered to Him years ago and need to be surrendered to Him daily. This is His will for me now. Though care-giving is not my natural gift, that’s what God has called me to. I can trust Him for grace.

Remember the Christian life is one of service, not self-focus. This is seen throughout the Bible, especially in the life of Jesus:

We exhort you, brethren…comfort the feebleminded, support the weak, be patient toward all. (I Thessalonians 5:14).

 

Whosoever shall give to drink unto one of these little ones a cup of cold water only in the name of a disciple, verily I say unto you, he shall in no wise lose his reward (Matthew. 10:42).

 

To do good and to communicate forget not: for with such sacrifices God is well pleased (Hebrews. 13:16).

 

After [Jesus] had washed their feet…he said unto them, Know ye what I have done to you? Ye call me Master and Lord: and ye say well; for so I am. If I then, your Lord and Master, have washed your feet; ye also ought to wash one another’s feet. For I have given you an example, that ye should do as I have done to you (John 13:12-15).

 

With good will doing service, as to the Lord, and not to men (Ephesians 6:7).

 

And let us not be weary in well doing: for in due season we shall reap, if we faint not. (Galatians 6:9)

 

For I was an hungred, and ye gave me meat: I was thirsty, and ye gave me drink: I was a stranger, and ye took me in; naked, and ye clothed me: I was sick, and ye visited me: I was in prison, and ye came unto me. Inasmuch as ye have done it unto one of the least of these my brethren, ye have done it unto me (Matthew 25:35-36, 40).

Accept this as my primary ministry. Though some pursuits and ministries have been put on the back burner for now, this is not a hindrance to our ministry: it is our ministry.

I hope these have been helpful. I would love to hear how you deal with caregiver emotions, especially resentment.

God is not unrighteous to forget your work and labour of love, which ye have shewed toward his name, in that ye have ministered to the saints, and do minister
(Hebrews. 6:10)

Barbara HarperBarbara Harper will celebrate 36 years of marriage in December. She and her husband have three sons, one sweet daughter-in-law, and an adorable 18-month-old grandson. She enjoys reading, stitching, card-making, and writing for a ladies’ newsletter at church. One of her passions is getting women into the Word of God for themselves. She loves to write about her family, funny or interesting things she see, and things God has taught her at Stray Thoughts. She did a larger series there on Adventures in Elder Care last year.

A Tribute to A Sister Who Bears the Burden of Caregiving

A moving tribute to a sister who bears the burden of caregiving

In celebration of National Family Caregivers Month, we’re sharing the stories of other bloggers and caregivers. Today guest blogger Debby Hudson writes a tribute to her younger sister, who carries the burden of caregiving for their mother.

You don’t realize how much of life you can’t know.

When you’re a kid, you go with the flow, watch the family ties and expect things will play out by what you’ve seen. You discover which aunts are the entertainers, with stories or shenanigans. You see who’s the wanna-be singer and who is the serious type. You don’t see trouble coming. You don’t anticipate your world of family Thanksgivings or vacations will break apart.

It was the divorce that first blind-sided you. Then remarriages with both parents and new siblings who would be much younger than you. You couldn’t know you’d have a sister you’d never share a home with or that you’d end up on opposite sides of the country from your parents.

Life happens in unexpected ways but you grow up and live with the distance and look forward to visits. You even start to dream of the time Mama will retire and maybe then, she can spend longer than a week with you and her grandkids. Until the other thing you didn’t see coming happens: dementia.

We believe it’s Alzheimer’s dementia, though I don’t think there has been a medical test confirming this. Just a knowing from the doctors and growing acceptance from the family.

It started with little things, like the repetitive questions that turned into forgetting birthdays and progressed into not calling. Living thousands of miles apart, phone calls had been our connection. When this stopped, and when she abruptly ended my calls to her as if I were a telemarketer, the amber caution light started flashing red.

It’s one thing to bridge the distance of miles, it turns out to be impossible to bridge the gap of a fading memory.

There wasn’t much discussion in emails between my sister and I. Nothing more than the shared information that mama’s care was becoming more of a concern. Mama lived next door to my sister Lisa making it easier for my sister to notice the signs something was off. To notice Mama was wearing one shirt pulled over another or that she wasn’t bathing. Most disturbing was when she’d ask the granddaughters, the ones who were growing up right next door to her, who that man was. That man, their dad, her son-in-law who’d never lived farther than a stone’s throw from her backyard yet she didn’t know him.

It’s near 10 years since these lapses grabbed our attention. It’s been ten years since mama’s youngest, my sister, 16 years younger and still raising her own kids, was drafted into the position of ‘primary caregiver’. A job no one volunteers for. But love pushes forward through the heartache of dementia.

They’re up there in the northwest corner of our country where the fruit valley produces those golden apples, and we’re down here in the southeast corner where we produce tourists to fill our beaches in winter. There is never enough time or money to get back and forth for either of us. For me to pitch in, or Lisa to take a break.

A few years ago we moved mama into a care facility as she needed 24-hour care. Lisa, once again, had to bear the burden of standing up to the aunts, mama’s sisters, who were still in denial of the disease. It’s always been her, making the drives back and forth for visits, laundry, doctor’s appointments, haircuts, birthdays and holidays. We’ve shared our tears, Lisa and I. Not for the time spent in seeing to mama’s needs but the sadness of losing our mother.

I stumbled on thUnknownis verse one day.

God says, “Though she may forget, I will not forget you!” Isaiah 49:15

I don’t know how to support Lisa any more than with my words and assurances that she’s doing the right thing. It seems meager and not enough. Her reward is having Mama smile at her, hoping her smile means the smallest of recognition.

We know God’s mercies are new each morning. He has not forgotten Mama or us. Great is his faithfulness.

Unknown-2Debby Hudson is a beach-loving South Florida girl who grew up in the church but learned about grace from an ever-changing group of men in recovery. Music, good words and lots of laughter with friends and family are her favorite parts of life. You can find more from her at Living in Graceland.

 

 

Inspire Me Monday Instructions

What’s your inspirational story? Link up below, and don’t forget the 1-2-3s of building community:

1. Link up your most inspirational post from the previous week (just ONE, please).

2. Vist TWO other contributors (especially the person who linked up right before you) and leave an encouraging comment.

3. Spread the cheer THREE ways! Tweet something from a post you read, share a post on your Facebook page, stumble upon it, pin it or whatever social media outlet you prefer–just do it!

Please link back to this week’s post or add the button to your post so that we can spread the inspirational cheer :).

I found inspiration for my Monday at #inspirememondays. Join us! (tweet this)

Take a moment to visit  Angie, the other hostess.
So, go ahead! Take the plunge and share your most inspiring post with us!

 Loading InLinkz ...