He Lives within my Heart

After-effects of a battle with Alzheimer's

 “He lives within my heart!”

You ask me how I know He lives, He lives within my heart!

It’s amazing to stand in an auditorium filled with Christian pastors and teachers and have all 300 or so lifting their hearts to God together in song.  I loved every moment.  Until they introduced the hymn, “He Lives”.  The song leader motioned everyone to stand and I felt my heart sink even while it also rejoiced.

“He better not direct and have us hold out that note,” I whispered to my husband regarding the actions of the song leader.  I tried to sing, I really did.  But as soon as we hit the chorus, tears beat the words to my mouth.  Swiping my cheeks frantically, I leaned my head down so my hair could cover my face a bit.  The congregation sang mightily and the chorus sounded amazing echoing around that great hall.

They hit the last verse and I muttered to myself, “Don’t hold it…don’t hold it.”

I’m pretty sure that song leader attended the same university my dad did.  You know, that one where they teach you to hold your arms up and wave the audience into unison singing, where you learn to sing with emotion and emphasize certain notes.

This song leader entered the chorus with gusto and loudly sang the lines, “You ask me how I know He lives?”  He  took a deep breath, and just like my dad used to do, he directed all of us to a grand finale,

“He LI-i-i-i-i-i-i-VES, within my heart!”

“Amen!” shouted pastors and teachers.

“Oh dear!” I whispered.

He lives…

My dad’s been gone just over a year.  The pain and confusion is over for my dad. The caregiving days are over, for my mom.  I no longer wonder or worry about how dad is doing, but it’s worse not having him around.  When I hear those songs he loved so much, or read a verse he cherished, or see a new building being built or spy old blueprints: in those moments the loss of my hero smacks me so hard.  It blindsided me during that hymn and I hate that it did, yet I love that it does.  My dad sang that song out of pure unadulterated joy in his Savior.  He believed God had led in his life and he believed that Christ lived in his heart.  He believed it, he lived it and he sang it.

Watching my dad with Alzheimer’s was difficult, but getting the opportunity to see him cling to the love of his Jesus was beautiful.  I couldn’t sing “He Lives” with my fellow teachers very well.  The tears fell too freely.

But I have the song in my heart, where my dad taught me to place and hold the love of God.  “He Li-i-i-i-ives, within my heart!”

Alzheimer's cannot remove Jesus living in your heart! #HeLives #caregiving 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 favorite posts from last week!

2. Visit 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!

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What a Rubber Ducky Taught Me About Salvation

rubber duckyRubber Ducky Memories

I walked into the guest bathroom this morning and saw my grandson’s rubber ducky sitting on the edge of tub. Memories of a smaller tub and a similar rubber ducky floated into my head.

January 3, 2003—Pedro had eaten his breakfast one painstaking bite at a time. I had braved the San Francisco fog and walked to the local Starbucks for something better than hospital food. Neither one of us ate much, though, because anticipation ran through our veins faster than the IV pump could deliver Pedro’s morning meds.

Transplant day had arrived! For two torturous weeks in November and December, Pedro had given himself Neupogen shots in the stomach each night. In the morning, he would check in to the cancer ward on Eleven Long of the University of California San Francisco (UCSF) Parnassus campus. For four hours he would sit in a chair hooked up to an apheresis machine that would collect stem cells from his blood and pass the blood back into his body.

In the late afternoon, the lab would count the number of stem cells collected, and the doctor’s office would call to let us know how whether or not Pedro would need to return the following day. We couldn’t leave San Francisco until they had collected enough stem cells. The process dragged on, day after day. While he sat in the apheresis chair, I would scramble to find another cheap hotel or change our plane tickets one more time.

Most people spend 4-5 days in the apheresis chairs. But after all Pedro had gone through to get to remission, his body took longer to produce stem cells. After a month of rest, we had returned to the hospital right after Christmas for one last round of chemo.

First, We Kill You

The doctors had explained the transplant process in simple terms. “First, we give you enough chemo to kill you,” the intern explained. “Then, right before the drugs kill you off, we infuse you with stem cells. They act like smart bombs and repair everything that’s wrong with you.”

Despite the high doses of chemo, Pedro’s energy remained high. He played his theme song each time a doctor came in to visit, and we watched funny movies to pass the time the day before the transplant. We also had our first visit from a hospital chaplain (awkward, to say the least). But nothing could contain our underlying river of joy.

Finally, the nurse pushed through the doorway with a strange cart that held an open tank of water on top. “Transplant time!” she chirped. A rubber ducky floated serenely in the pool of water as it sloshed with the cart’s movement. “Your stem cells are frozen,” the nurse explained, “and we thaw them out and warm them up a bit in this bath before we pump them into you.”

We bobbled our heads, too excited to say much.

“And now you’ll have TWO birthdays,” the nurse exclaimed. “Don’t forget this one, Pedro,” she cautioned. “Imagine, you can have two cakes per year!”

Within twenty minutes the room smelled like slightly rotten grapefruit. “I see you prepared for the day,” the nurse said with approval when she saw me give Pedro his first stick of gum.

The chemical used to preserve the stem cells (DMSO) left a grapefruit-garlicky taste in his mouth. Because of his facial paralysis, gum chewing (any kind of chewing) didn’t come easily. But it didn’t matter. Soon, the nightmare of cancer would end and Pedro would experience rebirth.

Three Birthdays

Of course, after the transplant, healing took time. Lots of time. Pedro didn’t pass from circling the drain to riding his mountain bike again within weeks. Each sniffle and ache sent us running back to the doctor to make sure the stem-cell transplant had worked.

We held our breath at each checkup, and for an entire year he received chemo treatments straight to his brain. He had to get immunized all over again, on the same schedule that babies and toddlers experience.Can a rubber ducky teach you something about #salvation? #BGBG2 http://wp.me/p2UZoK-1Bp via @blestbutstrest

Pedro studied up on super foods and antioxidants in an attempt to resist relapse. Only to discover the scary way that too much chocolate can act as a vaso-restrictor and mimic his original symptoms.

We celebrated each milestone with caution. But deep down, we knew that those stem cells had done their job. Pedro had received healing the day that rubber ducky floated into his hospital room.

The whole process reminded me of another kind of rebirth. The one where we confess our sins and ask Jesus to take control of our lives. The transformation from circling the drain in sin to mature Christian takes time, too.

We make mistakes. We have to go through a relearning process similar to the immunization process. We doubt the efficacy of our salvation. We want to wrest control from our Savior and do things our own way. Others might look at us and question whether or not we are really saved. But deep down, we know we have experienced rebirth.

The rebirthing and regrowth processes take place at a different rate for every patient sinner. We find the key to happiness when we dare to internalize Psalm 51:10, “Create in me a purse heart, O God, and renew a steadfast spirit within me.”

The Message that’s Better than any Rubber Ducky

We don’t have to act as doctor, nor nurse, nor stem cell. All we do is ask, and God will do the recreating within us. I read The Message translation this morning, and it stuns me with its beauty:
Psalm 51:7-15

Soak me in your laundry and I’ll come out clean,
scrub me and I’ll have a snow-white life.
Tune me in to foot-tapping songs,
set these once-broken bones to dancing.
Don’t look too close for blemishes,
give me a clean bill of health.
God, make a fresh start in me,
shape a Genesis week from the chaos of my life.
Don’t throw me out with the trash,
or fail to breathe holiness in me.
Bring me back from gray exile,
put a fresh wind in my sails!
Give me a job teaching rebels your ways
so the lost can find their way home.
Commute my death sentence, God, my salvation God,
and I’ll sing anthems to your life-giving ways.
Unbutton my lips, dear God;
I’ll let loose with your praise.

Transformation happens when we sign up for the process. The process might prove painful and have many dark nights of the soul. But transformation will take place.

New Year or New Every Morning

God's grace offers a fresh start every day

God's grace means we get a new start every day

God’s grace means we get a new start every day

On New Year’s Day, it’s natural to focus on the “new” part.  It’s a new day, a new week and a new year all in one, this year.  Today is a traditional time to make New Year’s Resolutions and a time when the entire country focuses on getting organized and healthy and cleaning up our acts.

For me personally, it’s even bigger than just the start of a year.  In the last few months I’ve switched houses twice, live in a different city and state and of course, I changed jobs. “New” has been on my mind a lot lately. I’ve never been much for making Resolutions, mostly because I’m not good at keeping them, also, if I think about all the things I should be changing in my life it becomes overwhelming quickly.  Let’s face it – I have a lot I need to work on changing.  I should straighten out my diet and exercise more.  I should be more organized and more consistent.  I should spend more time in God’s word, I should…I should. The “should” list is pretty much endless.

Yeah.

I’ve never been much for the New Year’s Resolution thing.  In spite of that, I cannot help but think about how great the ability to start fresh feels to my soul.

Today I read this verse in Lamentations 3:22-24

Because of the Lord’s gracious love we are not consumed,
    since his compassions never end.
They are new every morning—
    great is your faithfulness!
 “The Lord is all I have,”[a] says my soul,
    “Therefore I will trust in him.”

God’s grace is new every morning!  Did you get that?  Every morning when you get up, you start new with Jesus.  New Year’s Resolutions?  Not necessary.  Every single day is a new start.  Through God’s grace we get to work on changing what we need to change every single day.

God's grace is new every single day. #godsgrace #newinchrist #blessedbutstressed Click To Tweet

 

My Christmas gang was so much fun. But now it's New Year's and new starts...

My Christmas gang was so much fun. But now it’s New Year’s and new starts…

I’m sitting in my quiet house, after a crazy busy Christmas break with all my kids home, plus other friends and family who visited.  It was wonderful – tiring but wonderful. I had a huge list of things to get done through the break and I completed a good portion, but still have lots to do. I should be…should do…should…

My plan is simple.

I’m going to cling to being new, every day, through the grace of Jesus Christ. God can change in me whatever He needs to change. He will give me the strength to do what I need to do. He provides whatever I need.  I will rest in Him and choose His grace each day.

New Year's Resolution or new start with God? #newinchrist #newyear2017 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 favorite posts from 2016!

2. Visit 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!

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The Music of God’s Love

My Christmas Agenda Might be Different from God's Plan

I had not idea the music to make me less homesick could be a blessing to a lonely old man.

I had not idea the music to make me less homesick could be a blessing to a lonely old man.

I leaned against the cold marble, pulled up my knees and brought my flute to my mouth,  and let the beloved music of home and Christmas fill the frozen air.  The French train station was crowded down nearer to the tracks, but not where I sat guarding my backpack.  My traveling companions suggested songs and I tried to comply, having no music, as I felt I had sacrificed valuable space already, backpacking around Europe with my flute.  I played “Silent Night” and the echoes drifted across the high ceilings and wrapped around the marble pillars.  I closed my eyes and tried not to feel homesick as my fingers automatically searched for the next note.  A strange smell wafted into my consciousness and I opened my eyes as my song faded.

There, about six feet to my left, tottered a smelly old man, practically toothless, dirty and hunched over with tiredness and cold.  He stopped when he saw me watching and stayed where he was.  My friend suggested another song and with my eye on the bum, I started to play again.  He shifted closer.

I scooted a tad to the right and continued playing.  He shuffled nearer still, an odd hum coming from his direction.  The backpack to my right prevented me from moving any farther and I lowered my flute to shove the bundle over.  My friend said quietly, “He’s not going to hurt you.  Your music is beautiful and he just wants to enjoy it.”

Scared and insecure, I began playing again and in spite of my self-consciousness and the smell drawing closer, I lost myself in the music and played to the end of “What Child is This?”  In the sudden silence following my song, I heard a burp.  I stared helplessly at my buddies who giggled a bit and shrugged.  “What are you going to do?  He likes your music.  It’s his blessing tonight.  Play more.”

Leaning to the right, trying to appear as though this were comfortable, I played on as the old man on my left leaned with me.  By half-way through “The First Noel” I could look up and see him almost bending over the top of where I sat on the floor.  His eyes were closed and a slight curve lifted the sides of his mouth.

At the sight of that smile, I relaxed for the first time since arriving at the train station hours before when we found out our train wasn’t going anywhere.  I’d had an agenda – through France and onward to Italy.  Let’s move it, Christmas is coming!

I rested my right elbow on my backpack and looked up at the peace on the face above me, smiling and nodding to the haunting notes from my flute.  I played on, the sounds amazing in that ancient marble building.

I had an agenda, but God has a plan! #blessedbutstressed #christmas Click To Tweet

I had an agenda, but now, with 30 years of hindsight, I wonder if God didn’t have another plan.  While I desired travel, to make memories and experience new sights and sounds, maybe I was actually there to be Christmas to a sad and lonely old man on that cold winter night.

I’m facing a crazy busy Christmas season, yet again.  I have a new-to-me house to move into, kids to pick up from airports, gifts to wrap and memories to make.  I have an agenda.  But I need to pause, because I can’t help but wonder what plan God has for me this season.  Who will God send me that needs to feel the beautiful music of His love?

Who needs the sweet music of God's love? #blessedbutstressed #christmas 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. Visit 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 :).

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How to Bring Joy to a Caregiver

joy Psst! Do you want to bring a little joy into a caregiver’s life?

“How do I know if I know a caregiver?” you might ask. Good question. A caregiver is someone who bears the responsibility of taking care of someone who can’t take care of him or herself. Family caregivers fall into one or more of the following categories.

Emotional Caregivers

joy caregiverSome caregivers take care of the emotional needs of a parent or spouse who resides in a care facility. In addition to the caregiver’s normal life, he or she may spend time calming down an anxious parent or spouse who suffers from dementia or Alzheimer’s. This involves a commitment to show up in person or by phone when a crisis arises.

Emotional caregivers often get overlooked because professional caregivers take care of the physical needs of the patient. But helping a loved one stay emotionally healthy can take a toll on someone.

How can you bring joy to someone who cares for another person’s emotional wellbeing? Let the caregiver know that you care. This kind of caregiving can often last long term, and caregivers start to feel isolated and discouraged. Send encouraging cards to them. Share words of affirmation. Pray with them and for them. Listen without giving advice.

Physical Caregivers

Other caregivers must care for the physical needs of a loved one. This may include anything from lifting, bathing, helping with personal grooming, dressing, and feeding. Physical caregivers don’t receive money from anyone for the work that they do. They do it out of love—often at great emotional and financial cost to themselves.

A physical caregiver may have to quit his or her job in order to care for their loved one. They may need to work from home and experience increased isolation. The need for specialized equipment or home modifications may strain a caregiver’s bank account.

You can bring joy to someone who carries the brunt of physical care for another human by offering to run errands. Spend time visiting—either the patient or the caregiver—and bring along some joy (find out ahead of time what that would be. Every person has different definition. Dark chocolate always fills me with joy). Show up. Listen. Withhold the advice unless asked.

Crisis Caregivers

A crisis caregiver takes on the burden of caring for a loved one who has a catastrophic accident or illness. Most people don’t prepare for a crisis that hasn’t taken place yet, so the crisis caregiver will feel as if their world has imploded. The crisis caregiver will most likely have emotional needs, financial needs and informational needs

The overwhelming amount of things that he or she must do in addition to keeping the rest of the family together might cause a crisis caregiver to feel paralyzed. When Pedro received his cancer diagnosis, I had so much to do that at times I didn’t know whose house our kids had spent the night at. Thankfully, kind friends made sure the girls made it to school each day—complete with clean clothes and a sack lunch.

You can bring joy to a crisis caregiver by enlisting help from church members, co-workers or neighbors. Groups of people can pitch in to bring meals, take care of children, mow the lawn, shovel snow, or buy groceries. Don’t forget to check in with the caregiver to make sure no one in the family has dietary restrictions. Once again, listen more than you talk and only give advice when asked. 

All Types of Caregivers Appreciate Affirmation

No matter what type of care a person gives, knowing that they don’t serve in a vacuum can bring joy. Use social media to pass on a Bible verse, a beautiful photo, an encouraging song, or words of affirmation. Just remember to respect the caregiver and loved one’s privacy. Don’t be the one to announce to the world that Susie’s husband has cancer by a careless Facebook post or tweet.

During this season of good tidings and great joy, what will YOU do to come alongside a caregiver?

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. Visit 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 :).

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A Neutropenic Christmas

God's Love in the Small Things

We can make the difference - even during a a neutropenic Christmas!

We can make the difference – even during a a neutropenic Christmas!

“All I want for Christmas is…” the song echoed down the hospital corridor as I made my way back to my neutropenic boy’s room.  My mind finished automatically, “…to be home.”   I wanted to be home, I wanted to be with my whole family, I wanted to not be watching temperatures and blood counts.

Truthfully, this was the day after Christmas.  We had been home for Christmas, and the blessings we felt as we gathered around our tree had me fighting back tears most of the day.  December 26, however, brought with it a fever with an unknown source and we were back in the children’s ward, listening to Christmas carols and still smelling the turkey.

I walked into Andrew’s room and saw his brightly flushed cheeks and over-bright eyes and I knew the fever hadn’t abated.  “Are the girls coming?” he asked.

“No.  It’s snowing, Andrew.  They can’t get over the pass very safely.  Daddy says they’ll try tomorrow.”

“Ok”  His eyes closed but his hands still twitched restlessly.  I settled onto my cot.  “Mommy,”  his eyes were on me,  “I loved Christmas!”

“Me too, buddy.”

Andrew during his surprise Santa visit.

Andrew during his surprise Santa visit.

As my four-year-old drifted off to the sleep he needed so badly I remembered the visit from a local Santa, who’d known Andrew couldn’t go out.  I thought about my friends who were all happy to remove shoes, to use Germ-X, to wear a face-mask while they visited.  I pictured the video made by my friend so my boy wouldn’t miss his Bible class.  I recalled the gas gift cards, the books and the music CDs we’d received.  I smiled as I heard again the students who’d come caroling at our door, knowing Andrew was missing the annual Christmas party at the school.

I had been scared, when approaching the Christmas season with a neutropenic boy.  I wondered how we’d make it special and keep our traditions with him being so sick.  I prayed daily we could actually celebrate Christmas at home, together.

I’d forgotten that God is found in the small things.

He’s found in the gifts and thoughtfulness of friends and family.  God gave us presents we’d never thought of, allowing us to see the caring of the world around us in ways we never would have otherwise.  God opened our eyes to the beauty of time together over anything and everything else.

Not every caregiving story provides that kind of Christmas.  As I write I think of the many caregivers I know and love who no longer have a person to take care of: they would give anything to be called a caregiver again.  They are facing a Christmas that feels empty.

My prayer, this Christmas season, is that we remember that God is in the small things… Click To Tweet

My prayer, this Christmas season, is that we remember that God is in the small things:  the things that you and I do to remind caregivers they are not alone.  Those moments we spend sending an encouraging note.  That extra copy of a picture we share with a caregiver to show them we remember, we care and we love.

Maybe sometimes God’s love comes through visits from Santa or maybe it’s in that bottle of Germ-X that caregivers know too much about – whatever form God’s love takes, let’s you and I be the ones to share it!

Whatever form God’s love takes, let’s you and I be the ones to share it! #neutropenicchristmas… 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 :).


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What DO Caregivers Crave?

The Answer Might Surprise You!

caregiver-craveWhat DO Caregivers Crave?

I locked the bathroom door behind me and hurried through my morning routine, keeping a wary eye on my watch. I had just five minutes until the room outside would fill with doctors and interns on their morning ‘rounds’ of the cancer ward. They didn’t actually go anywhere—they met in the repurposed patient room that doubled as a family hangout and place to grab a quick shower.

With three minutes left, I gazed longingly at the bathtub and the clean towel I had grabbed from the laundry cart. Not enough time. Pedro had had a rough night and I had cat napped much later than usual. A fresh layer of deodorant would have to do.

I grabbed my toiletries bag and swung the door open…20 pairs of dignified eyes swiveled in my direction. Mumbling mortified apologies, I scurried through the door into the hallway.

More than anything else, I craved a long soak in a hot bath without the guilt of knowing some other patient’s family member might need the bathroom, too. I craved a night of sleep without the beeps and blips, alarms and nurses checking on Pedro.

Of course, I wanted Pedro healthy and whole again. But nothing in my life up to that point had prepared me for the life of a caregiver. If you know a family caregiver, this list might help you understand what they may crave the most.

Five Things Caregivers Crave

1. Affirmation. Take time to speak words of appreciation for the job that they do—even if they don’t take care of YOUR family member. A simple, “Caregiving is difficult. Your ________ (fill in the blank) is so lucky to have you on their side during this difficult time.”

2. Acts of kindness. Caregivers may not have time in the moment to properly thank you for your deed, but believe me, each act of kindness helps fill the hole of loneliness and isolation. Buy a gift card. Send a note. Reach out on social media. Let the caregiver know that you care.

caregiver-crave3. An hour of worry-free time. At one point in Pedro’s illness, a family friend flew from Montana to California just to spend 18 hours with Pedro. He encouraged me to find a hotel room and to relax. It wasn’t easy for me to step away, but after a long soak in a hot tub and an uninterrupted night’s sleep, I felt ready to take on caregiving again.

4. Activity. The mind-numbing boredom and fear of sitting in a hospital room with a critically ill person can threaten to drown out reason. I entertained myself by bidding for things on eBay with money I didn’t have. Anything to stimulate the mind or the body. Gift a membership to Audible (the patient and caregiver could even listen to books together). Offer to go for a walk with the caregiver.

5. A hug. A virtual hug works, too, if the caregiver lives a long ways away. I went for weeks at a time without receiving a hug from anyone. Pedro’s life hung in the balance and we were a thousand miles from friends and family.

Other Ideas?

Q4U: What can you add to the list if you are or have been a caregiver? Do you know a caregiver that you can reach out to?

Five Tips for Using Social Media for Support in a Crisis

Beware Oversharing and Sharing What You Shouldn't!

How to use social media to raise support for a sick person

To Share, or Not to Share

In the last few years, we’ve seen millions of people, from celebrities to classmates, live their lives out loud on Facebook, Twitter and other social media sites. But when disaster strikes, how does a person decide what to share and with whom to share the information?

Ultimately, the decision should rest squarely in the hands of the person who is sick. In the case of an ill minor, the decisions rests in the hands of the parents. While our first impulse might be to log on to to Facebook and announce “#Cancer sucks, and Bobby has it”, it’s probably not a good idea. Especially if ‘Bobby’ is your husband and you haven’t discussed it with him yet. Or even worse, if ‘Bobby’ is your cousin’s child and your cousin has no idea that you’ve announced his child’s medical condition to the entire world.

When my husband, Pedro, received a diagnosis of non-Hodgkin’s Lymphoma almost 14 years ago, Mark Zuckerberg hadn’t even finished high school and Jack Dorsey had yet to create Twitter or tweet about anything. Social media consisted of emails and local gossip.

When we broke the bad news to family and close friends, we either did it in person or called them. We emailed others who we thought would like to know about the diagnosis.

At first, it was easy to keep people informed about Pedro’s fight. Gossip and the occasional phone call did the trick. Unfortunately, when his condition worsened and we had to travel over a thousand miles away from our local support network, information sharing got complicated.

From Mild to Wild

Phone calls to our local pastor and my parents (who had moved in with us to take care of our young children) kept people informed of our prayer needs and Pedro’s ongoing condition. Unfortunately, this word-of-mouth method of passing on information resulted in rumors of Pedro’s eminent demise (though no fault of either our pastor or my parents)—prompting one of my daughter’s classmates to say to my daughter, “Hey, when your dad dies your mom can marry my dad then we’ll each have two parents.”

About this time, I purchased a laptop computer that I carried with me and kept hooked up to the phone line in Pedro’s hospital room (wireless was relatively new). In this way, I could send out emails with up-to-date alerts as to how Pedro fared. Unbeknownst to me, many people forwarded my emails to their friends, and before I knew it I got emails from strangers in other states and even countries asking to be added to the email list or just dropping me a note to let me know they were praying for Pedro.

Also unbeknownst to me, someone back home started a fund to help our family out. The fund allowed our girls to visit two times during Pedro’s illness—once at very short notice when the doctors advised that the family gather to say their goodbyes.

Social media has undeniable power and clout and it can play an important part in helping you, the caregiver, maintain your sanity (it’s much easier to write an update than it is to answer numerous phone calls) and build a community of boosters who will support you during your season of caregiving.

Five Tips for Using Social Media in a Crisis

1. Decide who will keep people informed.

Have a discussion with the person who has cancer and ask them what they want. A close friend who had helped us during Pedro’s illness received a cancer diagnosis several years ago, and she chose to act as gatekeeper to information (her husband had no interest in social media, while she already had a presence online).

2. Choose a social media source for sharing information.

One of my former students enlisted her entire Facebook network to cheer her on in her fight against breast cancer. Other friends from a different generation have chosen to form private, invitation-only groups. The following resources should prove useful:social media

  • Caringbridge.org offers free, personal and protected sites where family members can visit and leave messages of support. The personal site creator can share blog posts and approve those who want to join the site. Caring Bridge also offers a support planner that caregivers can use to organize family and friends who want to volunteer.
  • Facebook.com offers a free social media account. Be judicious with this powerful tool, and pay close attention to privacy settings unless your loved one wants the entire world to know about his/her latest bout with vomiting. You can also use this tool to start a private group.
  • Lotsahelpinghands.com is another free service offered to caregivers. Its primary purpose is to match volunteers with those in need and to help caregivers build a community to help them in their season of caregiving.
  • The phone tree, an old-fashioned but effective method of communicating whereby you enlist the help of several key people who commit to calling people on a list when there is a need to ask for help, prayer or give information. Many faith communities have a phone tree system in place—if you are part of a faith community, check with the leaders to see how the phone tree works.
  •  Email updates still serve as an effective way to keep key people informed.
3. Set boundaries and guidelines.

In retrospect, I don’t think I would have done anything differently. Neither Pedro nor I minded that people from around the world knew about his condition. Whether they were Christian, Jewish, Buddhist or atheist—it felt wonderful to know that people cared. Depending on the wishes of the person you are caring for (or, in the case of a minor, the wishes of both parents), you can limit access to the information you share. Do this by controlling who sees your posts or by including a note at the beginning of each email asking that those who are privy to the information not pass specific information on to others.

4. Get the word out.

Bad news travels fast, so this should pose no problems. Set up an automatic response to all emails informing people that you will be unavailable for a time. Direct them to your caringbridge site for further informaiton (remember, YOU can control who joins sites or groups). You can also prepare a statement and link to text back to those who text you for updates. The same goes for voicemail greetings. I hate talking on the phone, so I’d much rather leave a voicemail message asking people to check out the Internet site.  This frees me up to focus my attention on my loved one.

5. Don’t be afraid to ask for specific things.

The power of social media in creating a support system lies in your ability to ask. Generous people will respond.  Ask for specific things. At one point, Pedro’s white blood cell counts weren’t going up at the same time he had a blood yeast infection. I shot off an email asking people to pray that his white blood cell count would go up. Ask for volunteers. If you need someone to take you to the airport or a doctor’s appointment, or babysit your children, don’t be afraid to ask.

Don’t let fear keep you from reaching out to others. If you have other ideas about creating a community of support, please share them with us by commenting below.

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. Visit 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 :).

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Dreading a Colonoscopy? Ten Tips to Help You

Hint: A Colonoscopy is a Piece of Cake

colonoscopy

The Dread ‘C’ Word

If you have already turned 50, and you visit your primary care physician on a regular basis, you’ve probably heard the dread ‘C’ word. No, not cancer—colonoscopy.

Having a colonoscopy didn’t make it on my fifty fun firsts lists—mainly because ‘fun’ and ‘colonoscopy’ don’t belong in the same sentence, much less the same room. Who do I kid? A colonoscopy is painless and you won’t remember a thing—piece of cake, right?

The forty-eight hours leading up to the colonoscopy might kill you, though. I have no star power (I head about some morning show host that televised his or her colonoscopy in order to promote the importance of having one done), but I have survived two of them so far.

I offer advice from the wealth of my experience. Your doctor won’t tell you everything—he or she will simply hand you a prescription and a set of instructions longer than a new car contract and send you on your way.

Doctors don't tell you everything about how to prepare for a #colonoscopy. 10 tips to help you. Click To Tweet

Buyer Beware

1. Plan your colonoscopy for a Monday. Take my word for it. You don’t want to experience the privation and misery of preparation during work hours.
2. Ask for the first appointment of the day—even if you have to awake at 4 am and drive 90 miles. You want to be out of your misery as soon as possible.
3. Phone a friend…a very close friend. Pedro has managed to absent himself (not on purpose) during both of my colonoscopies. You’ll need a responsible person to drive you to and from the procedure. Your friend shouldn’t be grossed out by talk about diarrhea and farting.
4. Plan on grocery shopping at least four days before the event. For my second colonoscopy, I had to very bland foods with no fiber for two days, starting on the Friday before my Monday procedure (refer to #1). Buy lots of Gatorade (just make sure it has no color).
5. Warn your family and friends. The diet did strange things to my blood-sugar levels and I got cranky. Don’t make any important decisions during this time period (or try towing a trailer behind your truck).

colonoscopyThe Night Before C (no, NOT Christmas)

6. Movi-prep has nothing to do with the theatre or entertainment. It’s an evil substance that turns your colon so clean the doctor could eat his breakfast off of it. Ick—that’s a horrible visual, but I feel doctors deserve this dig because they don’t warn you as to the awfulness of Movi-prep.
7. You’ll need a garbage bag and an old towel (or two). Spread the garbage bag on your bed and lay an old towel on top. By your sixth dose of Movi-prep, simply relaxing in sleep will cause diarrhea. Trust me.
8. Don’t try to drive yourself to your appointment. Let your friend or spouse drive you. You will have just spent a night trotting back and forth between your bed and your bathroom. Exhaustion and driving don’t pair well.
9. Keep your sense of humor. Crack jokes to relax your medical team (or creep them out). When the doctor told me to lie on my side, cross my arms and pull my legs up a little, I quipped, “I feel like an Egyptian preparing for mummification.” I think everyone laughed…
10. You will remember NOTHING of the procedure. This is a good thing.

There’s No Pain Involved in a Colonoscopy

See? A colonoscopy shouldn’t scare you. You won’t remember the actual event. I hope you feel inspired to go ahead and make that appointment if your primary care physician has recommended that you get on. If you’re still a young’un, file this away for the future.

Taking care of your health (especially if you act as a caregiver to someone else) makes good sense—even if it feels uncomfortable to let someone else take care of you for a few days.

You can do this!

I'm sick of politics and all the vitriol. Let's talk about how to prepare for a #colonoscopy… Click To Tweet

Do you tend to avoid medical tests and procedures?

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 :).

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Caregivers for Life

When the beauty never fades and the loves never gives up hope

Loving hands are caregivers for life

Loving hands are caregivers for life

Although the house smelled of medication, rancid dishrags, baby powder and urine, the remnants of a life well-lived were evident all around. Knick-knacks reflecting good taste and money waited for my dust-cloth. A black grand piano sat in ancient splendor in a darkened and neglected corner of the living room.  A pile of dishes and a dirty stovetop didn’t quite hide the name brands that spoke of good breeding.  The luxurious carpet hid my footsteps from the reason I entered the house.

My reason certainly wasn’t to get rid of the horrible smells, although that was the source of my income.  My reason was not to cut the dust and allow the lights to sparkle off the ornamental decorations in the living room although that was on my to-do list.  My reason was not to change the dirty sheets, nor to spray air-freshener, nor to wipe the mirrors, all of which needed it in the worst way.

My first reason sat at the table, silver blue hair matted in the back and smoothed in the front, rocking back and forth, murmuring “No, no, no, no, no, no…no.”

My second reason stood beside her, his own gray hair flopped to the side, nervous but conscientious hands fluttering to help out his adored wife of 60 years.  He held out a spoon filled with mush and coaxed her mouth open, “Just one more bite, darlin’….you have to eat.”

“No, no, no, no, no.”

“Come on now, darlin’.  Just one more bite and then we’ll go get your hair done.  You’ll like that won’t you?  You’ve always liked getting your hair done.  Come on.  One bite, darlin’.  You need to eat.”

Moving in a burst of speed, he stuffed the bite in between another set of “no’s.”

Some dribbled down her chin and the discolored dishrag was put into use again, wiping the goo.

The rocking continued, echoing the defiant, “No, no, no, no…No!”

With a series of practiced moves, he finished up the feeding session and turned her wheelchair to the door, which I held open.  As he eased his wife into the front seat of their car, he patted her hair as smooth as he could and then loaded the wheelchair into the back.  He rounded the car and made to enter.  I interrupted as gently as I could, respect in my every thought, “Elder Stevens?”

He looked up from sorting his keys.

“Your hair….”  I paused, awkward about how to address an esteemed man such as he, relegated from Professor, Pastor and author to that of caregiver. He just stared at me, not helping me out.  “…you might…want to…uh… smooth your hair a bit.”

He reached up with a self-conscious giggle and smoothed his hair.  He motioned to his wife, “She would hate that!”  He plunked himself into the car with a laugh and sped away at a speed strangely at odds with the slow pace of his household.

I took a deep breath and turned back to the house again.  I held that breath as I raced through the house, throwing curtains wide and slamming every window open.  As I drew back the patio door,  the fresh breeze swept through the house and I let out my breath in relief.  I turned to the living room to start dusting.  That job was the most pleasant and it gave the worst parts of the house time to air out.

As I dusted the lovely furniture and ran my cloth over that beautiful grand piano, I pictured Mrs. Stevens the way I’d grown up seeing her; elegantly stepping from their nice car and walking up the front sidewalk with a grace that made her medium form seem tall, her mink stole wrapped around her neck under perfectly styled and blue-tinted hair.  Her husband would walk beside her, a gentleman as always, escorting her to their house with a hand at her back and another ready to open her doors.  She would sweep inside and soon I would hear the smooth sounds of Mozart drift from their house.  Sometimes I would pause while riding my bike and just listen to the flow of lovely notes coming from within my neighbor’s house.  .

A stroke had zapped her in the middle of the night about a year and a half ago.  My parents had gone over to help, before the ambulance could get there.  They told me that it was bad, that Mrs. Stevens might not live.  Our family prayed for her regularly over the next few weeks and were delighted when Elder Stevens had informed us of the joyful return of his wife.

I watched as their car pulled up the driveway and he came around to escort his wife to the door.  I waited for her stylish appearance.  Instead, he pulled out a wheelchair and a small, stooped and misshapen form was lifted out and into the chair.  He wheeled her up the sidewalk while she said, “No, no, no, no, no.”

“See?”  He beamed, “she’s getting her speech back!”

I was stunned and heartbroken for the loss of such a beautiful lady.

I finished in the living room and moved to their bathroom.  That was the worst and I detested cleaning it.  I had described it to my teenaged friends and they asked why I worked there and why I didn’t find a better job.  I glared at the bathroom and donned my big rubber gloves.  Here goes.  Ugh.

Why do I do this?  I thought to myself.

But as I scrubbed I thought of another moment I had stood, extremely reluctantly, in that same bathroom.

Elder Stevens had called me, “Carol, can you please come over, we’re having some difficulty.”  Upon arrival I discovered she was stuck where she had fallen in the bathroom and he couldn’t lift her.  It was truly the most uncomfortable moment of my life and I wanted to crawl away in shame.  Mrs. Steven’s head shook and she cried, “No, no, no, no, no.”  I wanted to cry with her but instead reached out a helping hand.  Together we lifted her, as he crooned, “I know Darlin’.  I know.”  Together we carried her into the bedroom and laid her gently on the bed, where he smoothed her hair and spoke softly to her.  “I know, Darlin’.  I’m sorry.  It’s just Carol.  You remember our little neighbor girl, Carol.  She just wants to help.  It’s OK.”

He still was soothing her with gentle encouraging words as I slipped out the door to take a deep, fresh breath and collapse in my own backyard with tears running down my cheeks.

What kind of life was that?  The elegant mink was in the closet, the hair was rarely beautiful and the only thing she could say, after a year and a half of therapy continued to be, “No, no, no, no, no.”

I moved to the kitchen.  Yuck.  It always smelled because the only time it got thoroughly clean was Thursday, the day I came to clean.  Elder Stevens tried his best, but it was all becoming too much for him.  He just couldn’t keep up and Thursday was his day to start again.  Each week I noticed things were a little worse than the week before and each week I tried to take on more duties.  He was tired, careworn, and I assumed he was heartbroken.

I checked the clock and realized I only had about 20 minutes until they would be back from the hairdresser.  I liked to be done before they got back because that way they came back to a sparkling fresh house, and, that way I didn’t have to face her helplessness and his concern.

I vacuumed my way down their hall and as always, my eyes were drawn to the pictures on the wall:  Elder and Mrs at their wedding, faces filled with hope and joy.  The two in the mission field with their son.  Mrs. Stevens  with her sisters, and Elder Stevens with his parents.  Her playing the piano in a glorious concert hall. Their 25th wedding anniversary and a picture of their 50th.  Everyone smiling, happy and looking like they belonged together.

Wrapping the cord around the vacuum cleaner I spotted movement out the sliding glass door.  It was their car racing back to the house.  I zoomed the vacuum into the closet and sprinted through the house slamming windows closed and turning off extra lights.  The garage door slid closed as I slipped out the front door.  Through the breezeway between house and garage and over the sounds of repeated “no’s” I could hear his gentle voice, “I know Darlin’.  You’re tired.  It’ll be okay honey.  We’ll just get you in the house and you can rest.  You look so beautiful with your hair all fixed like you’ve always liked it.  But then, you’ve always been beautiful.”

“No, no, no, no, no.”

“Well honey, you say that, but I love you.  I’ve always loved you.  We’ll get through this, just like we’ve gotten through everything.  You’ll feel better as soon as you rest.”

I clicked the gate shut behind me as they came around the corner.  Tears filled my eyes.  This is why I keep cleaning their house.  He doesn’t want a stranger for his Darlin’, and I cannot imagine a more beautiful picture of love.  Every time I heard those sweet gentle words I knew I would clean any mess, for however long it was needed, for a couple so in love that the beauty never faded and the love never gave up hope.

Family caregiving: when the beauty never fades and love never gives up… Click To Tweet

 

Do you have a caregiving story for National Family Caregiver Month?  Click here!

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 :).

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