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

breathingLosing My Ability to Breathe

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

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

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

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

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

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

“Does it help?” she asked.

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

A Different Kind of Specialist

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

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

“Really?”

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

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

Caregiver, Beware Your Breathing

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

 

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 You Need to Do to Avoid Caregiver Burnout

A Good Night’s Rest Provides the Elixir for Caregiver Burnout

Pedro ‘circled the drain’—his life hung in the balance and no one knew for sure how to stop the infections that waged war on his chemo-weakened body. The doctors had started using drugs they thought might work. They also spent long minutes sitting on his bed, staring at him. It’s never a good sign when a doctor takes the time to sit on a patient’s bed.

caregiver burnout

I felt weary. For six months we had battled cancer, and now this. I numbed myself with food. Praying took too much effort. My friends did the heavy prayer lifting for me.  I had no energy to form words and thoughts and sentences.

My uncomfortable chair-posing-as-a-bed in Pedro’s hospital room kept me tossing and turning. Just when I would fall asleep, a nurse would come in to check Pedro’s vitals, or Pedro would start awake, needing something.

The night before, a family friend had arrived to visit. He posed an interesting question that I answered without thinking. “If you could do anyting you wanted to do right now, what would it be?”

I responded with the first thing that popped into my head, “Soak in a hot tub.”

“Why don’t you do it?” he asked. “I’ll stay here with Pedro and you find a hotel with a hot tub.”

I found a place to stay on a bus route, and safely made my way to a small hotel. For the first time in months I luxuriated in a decent night’s sleep. The impersonal hotel room and soothing soak in a bath had worked like balm to my broken thoughts and frantic worry. I had arrived back at the hospital feeling as if I could handle the next second, the next minute, the next hour, the next decision.

Five Minutes on the Phone Undoes A Night of Good

My cell phone buzzed, and I hurried from the room to take the call. I wish I hadn’t. Unkind words poured out of the phone and into my ear from someone I trusted. Someone I thought was safe and on my side berated me with bitter words for what they perceived to be my horrible actions of the night before. They scolded me for spending the night in a hotel. They railed that I would let a ‘stranger’ spend the night in Pedro’s room.

Each hurtful word pierced my heart. Mesmerized, all I could do was listen and pray for wisdom and the ability to not utter hateful words back. After what seemed like hours, I muttered an apology and promised that I would call my tormenter the next time I felt the need for a break or feared I suffered from caregiver burnout.

Broken and wilted once again, I entered Pedro’s room. Our family friend looked up and smiled. “I’m so glad I could come and that you got a good night’s sleep,” he said. “You need to take care of yourself so that you can take care of Pedro.”

I nodded numbly.

“May I pray with you before I leave?” he asked.

I nodded again and bowed my head. As our dear friend lifted Pedro and I up in prayer, I felt the presence of the Holy Spirit draw close and pick the broken shards from my wounded heart. 

How to Handle Caregiver Burnout (if You’re the Caregiver)

In retrospect, I know I should have done many things differently to avoid caregiver burnout.8 Tips for Handling #Caregiver #Burnout http://wp.me/p2UZoK-1Cb

  1. Take time each day to relax. This might look different for each of you. A brisk walk in nature, writing in a journal, praying, listening to uplifting music, or recording beauty with a cell phone camera might provide an oasis of relaxation.
  2. Make healthy food choices. Overeating will only make you feel more discouraged and burnt out. Eating well is a form of self-care.
  3. Learn to hang up politely. I should have interrupted the phone call with a polite, “May we talk about this later?” If the caller had answered no, I should have said, “I’m sorry you feel this way. I’d be happy to talk to you about this later.” and then just hang up.
  4. Remember it’s not about you. That other person was experiencing thier own form of trauma because of Pedro’s illness. Althought the catalog of woes focued on me and all I had supposedly done wrong, in retrospect, I think the caller was really pouring out their worries and grief.

How to Handle Caregiver Burnout (if You Know a Caregiver)

  1.  Watch for signs of burnout: memory loss, inability to make decisions, irritibility, changed behavior, depression, and withdrawal from normal activities.
  2. Remember your sphere of influence. Take action based on your relationship to the caregiver. Sometimes, it’s easier to hear the hard questions from a friend and not a family member. My family members thought I was fine (mostly because I kept assuring them that I was). It took a family friend to understand the depth of my caregiver burnout.
  3. Ask. What can you do to ease the burden. Ask the caregiver what one thing they would really like to do and then help them make it so. When others ask, it relieves the fear that caregivers have that they exist in isolation.
  4. Remember it’s not about you. Don’t feel rejected if the caregiver doesn’t accept your offer of help. You might not be the person God has in mind to serve. Don’t burden caregivers with your opinions on the job they are doing. Think twice (or three or four times) before speaking critically.

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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Help Me Raise Money for the Leukemia & Lymphoma Society’s TNT!

Seeking Sponsors for not just a Walk-a-thon, but a Marathon

TNTThe Back Story

If you’re new to Blessed (but Stressed), you might not know much about our cancer journey. You probably see the occasional photos of Pedro looking healthy and don’t know at at one time he looked like an extra for Shindler’s List. If you don’t know about those years, here are some photos from our journey. You can find more stories about our journey here and hereTNT

Ever since Pedro’s stem-cell transplant at the University of California San Francisco’s Parnassus Campus hospital on January 3, 2003, Pedro has continued to heal and experience a whole new set of firsts that he never thought he would be blessed with.

TNT Collage

I’ve Joined the Team!

And ever since Pedro’s transplant, I’ve wanted to do something to honor his journey and help others who suffer from blood cancers. Now that our nest is empty, I have the time to dedicate to training for a long-distance race. I chose to join the the Leukemia & Lymphoma Society’s (LLS) Team in Training (TNT) program.

So I’ve done it! I’ve registered for the San Diego Rock-N-Roll Marathon (yes, you read that correctly! This old lady thinks she can run for 26.2 miles) on June 4, 2017. By participating as a member of TNT, I am raising funds to help find cures and ensure access to treatments for blood cancer patients.

Think of it as an old-fashioned school walk-a-thon fundraiser—only I plan on running, not walking. I’d like to raise $1200 (or more!). I survived a half-marathon on Sunday, and I know I’ll be able to keep working towards a full marathon.

Your donation will help fund treatments that save lives every day; like immunotherapies that use a person’s own immune system to kill cancer. You may not know it, but every single donation helps save a life with breakthrough therapies such as these.

Please make a tax-deductible donation in support of my efforts with Team In Training and help get us all closer to a world without blood cancers.

 

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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Self-Care for Caregivers Involves Learning How to Breathe

breatheSelf-Care for Caregivers Involves Learning How to Breathe

To breathe or not to breathe, this is the question. I know, we all breathe, all the time; otherwise, we would be dead. But did you know that HOW we breathe plays a huge role in our health?

During Pedro’s cancer year, I forgot how to breathe. It took me several years after his stem-cell transplant to actually learn how to breathe again. Unfortunately, my health (both mental and physical) suffered greatly during my years of forgetting how to breathe.

Fear and pain cause shallow breathing—our bodies naturally respond to threats by changes in breathing patterns. The problem occurs when we find ourselves in a constant state of stress—which disrupts our normal breathing.

According to Alan Fogel, Ph.d., in an online article for Psychology Today, “Chronic breath holding and effortful breathing are not healthy because the muscular effort, coupled with the effects of stress on the nervous, hormonal, and immune systems, can impair both physical and psychological function.”

Caregivers can live in a constant state of fright, flight, or freeze. When I thought Pedro might die any given day, I struggled to assure our children that everything would be ok (regardless of the outcome). I struggled to assure myself that things would get better. Seeing a doctor walk out of Pedro’s room (or into it) at an unscheduled time sent my heart racing.

If I would have known more about the importance of the way that I breathed, I could have avoided a lot of pain and agony later on—when all those months of bad breathing turned into a bad habit that chiseled away at my health.

So, if you care for someone, the number one thing you can do for yourself involves learning how to breathe.

Four Steps to Healthy Breathing

1. Remember the numbers. Four-seven-eight. 4-7-8. Breathe in for four seconds. Hold it for seven seconds. Breathe out for eight seconds.Rescue breathing for #caregivers. http://wp.me/p2UZoK-1C3
2. Breathe in through your nose. If you feel like you suffer from chemo-brain by proxy, it probably means you suffer from stress. To regain your ability to remember things, breathe in through your nose when you want to remember something. Scientists recently discovered that breathing in through the nose enhances memory.
3. Breathe to fall asleep. If you struggle with insomnia, try the 4-7-8 breathing technique as you lie in bed at night.
4. Exercise hard on a regular basis. According to the Mayo Clinic, regular aerobic exercise can ward off viral illnesses, reduce your health risks, and keep excess pounds at bay.

Keeping pounds off is vital for caregivers because caregiving takes a big enough toll on our mental health without having to deal with weight gain. Aerobic exercise doesn’t mean you have to join an aerobic dance class (thank goodness—I have two left feet).

Simply engage your large muscle groups, make sure your heart rate increases, and your feel your body start breathing more deeply. I finally purchased a fitness tracker to keep me honest about my effort. You can do this by walking briskly, climbing flights of stairs, running, bicycling, or dancing like a crazy person in your living room.

What other ways have you discovered to relieve caregiver stress?

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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Six Tips for Family Caregivers During a Catastrophe

Baby Steps at the Hospital

catastropheThe Family Caregiver’s Guide to Self-Care at the Hospital

“Excuse me,” I interrupted the nurse as she stood at the desk working on charts. “I don’t think Pedro received his pain meds.”

“Let me check,” she replied with a busy frown. “Yes, it says right here that he had his meds an hour ago.”

“If you check your supply, I’m sure you’ll see that he didn’t receive them,” I insisted. I couldn’t believe my bravery—normally, I avoid conflicts at all cost. “The last nurse came in and said she would bring the meds, and then something came up. After that, the shifts changed.”

With a dubious, harried look, the nurse took off down the hallway towards the pharmacy dispensing room. I trailed behind.

Two minutes later, the chagrinned nurse came out of the room with a paper cup full of meds in her hand. “You’re right,” she said, and headed to Pedro’s room.

THIS was why I spent every spare minute in the hospital—to prevent human error from harming my husband. I might not be able to cure his cancer, but I could make sure he didn’t suffer because overworked and underpaid nurses forgot to dispense his meds.

The Slippery Slope of Caregiving

When a family member gets launched into a health crisis, primary caregivers get launched into a tandem trajectory of life changes. Our bodies enter the fright, flight, or freeze state—usually choosing to fight for our loved one.

Within hours, we go through a mental list of everything we will give up or reschedule in order to remain by our loved one’s side until the crisis resolves. All too often, we slip into a state of mind where we believe our presence and participation are indispensible.

Within hours, days, or weeks (depending on the severity of the circumstances) a firm conviction grows in our minds that if we step outside the hospital room, something worse will happen. Our fear keeps us tethered to the bedside of our loved one. Friends or other family members might encourage us to step away and take a break, but we KNOW that if we do, something bad will happen.

I fell into that trap during Pedro’s cancer year. It didn’t help that partway through the year, his early remission turned into a catastrophic relapse. It also didn’t help that he needed specialized treatment a thousand miles away. To make things worse, other family members lived closer to Pedro’s new hospital—and they, too, felt that their presence provided the only barrier between Pedro’s recovery and certain death.

We came to an uneasy compromise (neither of us fully trusted the other to do the right thing) about caregivers in Pedro’s hospital room. For his entire hospital stay during the worst of his illness, a family member spent the night (and often all of the day) with him.

Of course, my single-minded, hyper-focused dedication ended up harming me. In order to achieve balance and not endanger my own health, I finally made some changes.

Six Tips for Family Caregivers at the Hospital

1. Learn the schedule. Know the daily routine—when the nurses dispense meds and when the doctor makes rounds. Use an app on your phone or a good old-fashioned notebook that gets passed from caregiver to caregiver.Six tips for finding balance as a #caregiver when catastrope strikes. http://wp.me/p2UZoK-1BZ

2. Keep track of meds and adverse drug interactions. Pedro figured out that Zofran (a drug to prevent nausea) actually made him vomit. More than once, family caregivers had to point out to medical staff that he had a reaction and shouldn’t be given the medicine.

3. Take breaks! Every morning I would walk down the street to the local Starbucks. I always went before the shift change and well before rounds or meds (see #1 and #2). The brisk walk and change of scenery did me a world of good.

4. Take the stairs. Walking up 11 flights of stairs several times a day might not seem like self-care. But believe me, the endorphins helped counteract the stress-induced cortisol. Sneak in as much vigorous exercise as possible.

5. Share the burden. I came to really appreciate the family members who spent time with Pedro so that I could keep my job. Their love and participation in the duties made my life easier.

6. Breathe deeply. I know, it sounds self-explanatory. But throughout Pedro’s crisis, I resorted to shallow breathing—which harmed my health. Take time-outs throughout the day to breath deeply and think of things that bring you peace.

I know these all seem like baby steps. When a loved one experiences a catastrophe, baby steps might be all a family caregiver can take. Remember, survival mode takes precedence—and that actually helps you through the initial crisis.

These small steps will help you maintain balance and a sense of control when the world seems horribly out of the control.

 

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.

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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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 eat 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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