The Ache of the Waiting Room

Hope for Caregivers

waiting room Today’s guest blogger is author Jennifer Dukes Lee. In the past year, whilst writing her book It’s All Under Control, she went through a season of caregiving for her parents. Here’s what she learned.

The Waiting Room

This is the waiting room. Welcome. You know this place, don’t you? When we are in the waiting room, we eventually have to make this choice: We can either distance ourselves from God or we can trust him in the wait. This truth became so evident to me over the last three years, a season when I’ve logged many hours in waiting rooms—literal ones. Waiting for a friend when she had a cancerous lump removed. Waiting for our daughter Anna when she underwent procedures for a digestive problem. Waiting for Dad when he had a pacemaker put in, and then more waiting when he had part of his right leg amputated. I’ve found that waiting rooms everywhere are a lot alike. An interior decorator has done what he or she could to make the place inviting. Chairs are upholstered in trendy colors. Fake greenery has been arranged in matchy-matchy ceramic pots. Meanwhile, the one you love is on an operating table. Your inner “fixer” is paralyzed. Unless you happen to have a degree in neurosurgery or anesthesiology, you are clearly not needed. You are, instead, stuck—feeling rather powerless—in the waiting room. If you’re lucky, a digital board identifies your loved one by a number and provides periodic status reports. My family of origin tends to be the obnoxiously loud ones in the waiting room. Humor has always been a coping mechanism for us. I suppose there could be worse things than laughing through hard times.

The Gift of Waiting

Caregivers know the ache of the waiting room. These words from Jennifer Dukes Lee will comfort and challenge you. #caregiver, #amreading, #itsallundercontrolOur stories in the waiting room kept us sane during one of Dad’s recent surgeries. Every so often, one of us would step out of our circle, somber faced, to check the digital board. A sister would whisper, “Still in surgery.” We’d pause, and then we’d all start in again. Here in the waiting room, it was about stories, connection, laughter. It was about family. There was no pushing, only pausing. Oddly, these moments, when I sat miles away from the answers I wanted, were an unexpected gift because they caused me to consider the practice of being still. I did not flit or fly. I was a bird on a wire, wings tucked in, waiting for hope to appear, inching up from the horizon. Waiting has compelled me to understand that I’m not in charge of the world and that my notions of control are all an illusion anyway. Waiting can feel like a weakness, especially in a culture that places a high value on self-sufficiency and “making things happen.” Waiting is the opposite of sufficiency, and it leaves me exposed and armorless.

The Armor of Waiting

I step into so much of my life wearing armor: The armor of ambition. The armor of good performances. The armor of masks. The armor of control. The armor of trying harder. There is no armoring up when you’re waiting. You simply wait, stripped down, vulnerable before your struggle. You can fix nothing. You are not in charge now—not that you ever were—but the armor you wear on a typical day gave you a false sense of security. You finally realize there shall be no pulling yourself up by your bootstraps. This can be a very beautiful thing. When you pause—instead of push—you do all the things that matter most: You pray. You read Scripture. You sit quietly—or laugh loudly, if that’s more your style—with friends and family. You practice allowing yourself to be still. In the quietness of a hospital waiting room, I would often turn inward and whisper to my Savior, “How would we get through this without you, Jesus?” Letting down your faux armor causes you to more carefully inspect your life and discover how incredible it is to belong to Jesus: Where, oh where, would we be without Jesus?

Where are You Waiting?

Where are you today, friend? Where, oh where, are you? Perhaps you are in a waiting room of some kind too. Perhaps you wish to act instead of wait. You want to take matters into your own hands but haven’t a clue how—or even if you should. What are you waiting for? The answer to your financial distress? A baby to come? A resolution to a relational conflict? The phone to ring? The wound to heal? The last twenty pounds to drop? That moment when it’s your chance to finally celebrate? You ask good questions for which there are no immediate answers: Why is this opportunity slipping through my fingers? How am I going to go on now that he’s gone? Maybe today you actually are reading these words in a hospital waiting room while someone you love is in the operating room, and your prayers seem to dissolve into antiseptic air as you cry out silently: Are you here, God? Though he may be silent, God has not abandoned you. He is working while you wait. Though he may be silent, God has not abandoned you. He is working while you wait. #itsallundercontrol #amreading #caregiver Click To Tweet The work that God does in the waiting room often proves more important than the end result. Here he will give you clarity for what he wants you to do when the wait is over. Here he will draw near to you. Here you will get in touch with your essential self, the one who wasn’t made to wear all that armor. This is the greatest gift of the waiting room. Lean in close, for when you least expect it, you will sense the presence of Jesus in ways you never could have before. 

Bio

waitingJennifer Dukes Lee is the wife of an Iowa farmer, mom to two girls, and an author. She loves queso and singing too loudly to songs with great harmony. Once upon a time, she didn’t believe in Jesus. Now, He’s her CEO. Jennifer’s newest book, It’s All Under Control, and a companion Bible study, are releasing today! This is a book for every woman who is hanging on tight and trying to get each day right―yet finding that life often feels out of control and chaotic.

Adapted from It’s All under Control: A Journey of Letting Go, Hanging On, and Finding a Peace You Almost Forgot Was Possible by Jennifer Dukes Lee, releasing this fall from Tyndale House Publishers. I’m so excited to be a part of a huge giveaway to celebrate the release of It’s All Under Control. Jennifer and her publisher, Tyndale, are giving away 50 copies of the book in celebration of its release! Enter below to win. Giveaway ends September 30. Winners will be notified by Tyndale House Publishers. Email subscribers can click here to enter.

It’s All Under Control 50 Book Giveaway

A Caregiver’s Letter of Gratitude

Never Enough Thanks

The treatment of my son’s leukemia was years ago but my heart continues overflowing with gratitude.

At the end of May, Andrew graduated from high school – a milestone that wavered in the hazy distance during those rough initial months of chemotherapy.  In the process of mailing out graduation announcements, Andrew asked if we were going to send one to Doernbecker Children’s Hospital where we spent an inordinate amount of time for a few years while beating Leukemia.  I was astonished.  Andrew downplays his cancer at every turn.  For him to initiate a thank you was a big moment for this caregiver-mom.  My heart feels full with love and gratitude.

Once suggested, the rest of Andrew’s plan was for me to write the letter and send it along with his announcement:

I don’t think I will ever be able to express my gratitude

Life milestone = triumph over cancer

Medical staff are amazing!

If you are medical personnel reading this and have not received a note of gratitude or a thank-you-hug recently, consider this as both.  The work you do: the support you provide families, the medical aid you give patients, the “stuff” you have to deal with on a day-to-day basis blows my mind.  I’m a teacher, not a medical person, and I view daily my input on the lives of my students and I pray I do well.  But you doctors?  You literally hold lives in your hands.  Nurses?  You completely put up with some yucky jobs in order to help patients.  Hospital janitors?  Your job is so incredibly important (having spent time in isolation, we know the value of cleanliness).  I stand in awe of you.  And I thank you.

Gratitude to hospital personnel cannot be expressed enough! #caregiver #beatcancer Click To Tweet

Thank you for saving my son.  Andrew is 14 years away from initial diagnosis.  Our gratitude is heartfelt.

Thank you.

 

Whitening Sensitive Teeth at Home for Your Best Smile

Enter to Win a Smile Brilliant Giveaway!

Enter now to win an at-home teeth whitening kit from Smile Brilliant!

smile
In Which I Discover a New Product: Smile Brilliant

So far in life, I’ve avoided the embarrassment of a student saying, “Teacher, your teeth are yellow.” But, I have wondered about teeth whitening systems—especially since I enjoy a cup of coffee (or two) on a daily basis, and drink herb teas. When Ashley, from Smile Brilliant, reached out to me to ask if I’d like to do a blog collaboration with her company, I thought, “Why not?”

In exchange for an at-home teeth whitening kit, I agreed to write a blog post about my experience and to post about it on social media. So, here’s my story. First of all, I’m a bad student—Ashley has graciously put up with all of my other deadlines and teacher-related things that prevented me from holding up my end of the bargain in a timely manner.

Second, Smile Brilliant has a cracker-jack customer service (including Ashley) program. The brochures and emails explained exactly how to go through the teeth-whitening process, from creating the molds to using the product.

The first step involves a quick survey to determine what kind of teeth you have—I classified mine as sensitive, so Ashley suggested that I use their product for sensitive teeth. A box comes in the mail with everything necessary for creating the molds and whitening one’s teeth. They even include an extra tray in case you mess up (which I did on the first mold).

One advantage to the at-home system involves drool. Yes, drool. For some reason, the casting process made me drool copious amounts—something that would have embarrassed me a lot in the dentist’s office just made me laugh at home.

The Whitening Process

Once I’d completed the molds, I popped them in the mail in the pre-paid mailer. I love it when companies give attention to detail like this—our small-town post office has limited hours. Smile Brilliant offers discounts to customers who might want to order two sets of trays—I didn’t see the point in this until after I’d started the whitening process. It’s a great offer, so you might want to consider it. They also have a discount on additional whitening product if purchased at the time of sending in the tray molds.

Two weeks later, I received the trays in the mail—they come in a nice plastic carrying case. I confess that it took me awhile to get started with the process, but once I did, it worked like a charm. Whitening involves a two-step process that’s repeated daily (more or less) over a period of several weeks.

I found that using a Q-tip to apply petroleum jelly to my gums kept me from tasting the product. Not that is has a bad taste, it’s just not chocolate! The instructions directed me to start for 30 minutes, and to work my way up to several hours.

After wearing the trays with the whitening gel, you’ll need to rinse and dry the trays before applying the desensitizing gel. This is where having two sets of trays would come in handy.

Enter TODAY to win a FREE at-home teeth whitening kit from Smile Brilliant! #smilefearlessly #smilebrilliant Click To Tweet

The Custom Fit

Because Smile Brilliant customizes the trays to fit your mouth, they fit like a glove (ok, a weird analogy for one’s teeth, but you get the picture). Sometimes, conversations sounded a little funky, but I could easily converse with others.

Smile Brilliant claims that you can carry on with your normal life whilst wearing the trays. Although I wouldn’t advocate wearing them when speaking in front of a large audience, I had no problems wearing them during my aerobics class, walking, hiking, running, and birding.

The trays keep the whitening gel and desensitizing gel where they belong, and comfortably on your teeth.

Does it Work?

YES! It does! Smile Brilliant suggests that during the whitening process, customers should forego things like coffee, tea, and berries. Did I mention that I’m a bad student? I read that piece of advice after I had finished whitening my teeth.

Despite my failure to read all the suggestions, my teeth looked noticeably whiter by the end of the process. I had just had my teeth cleaned three months prior to using Smile Brilliant’s whitening system, so I wondered if my teeth would actually get whiter. They did!

Here are the before and after photos:My whiter, brighter smile after using at at-home teeth whitening kit from Smile Brilliant.

So, if you’ve thought about whitening your teeth, and wondered whether to invest in whitening strips or a procedure at the dentist’s office, Smile Brilliant has a great alternative. You’ll get custom-fitting trays, a great product, superior customer service, and above all, a brighter smile!

ENTER TO WIN Your Own Teeth-Whitening Kit!
COUPON & GIVEAWAY DETAILS:
15% off coupon code: blessedbutstressed15
Giveaway link: www.smilebrilliant.com/g/blessedbutstressed

The giveaway is for a $149 Smile Brilliant credit. It is open for 1 week (closes on June 12) and open to USA, UK, Australia and Canadian residents.

Self-care for Caregivers is NOT an Oxymoron

Caregiver Connections: Self-Care Link up

self-careCaregiver Self-Care is NOT an Oxymoron

If you’re deep in the throes of caregiving, you probably hear the, ‘Take time to care for yourself,’ advice from multiple people. It sounds like an oxymoron. Who’s got time for that?

Join the 5-Day Self-Care Challenge for Caregivers. Learn how to take care of yourself so you can take care of your loved one. #caregiver #selfcareYou shake your head and let the suggestion roll off your already drooping shoulders. Who has time for ONE MORE THING when a loved one’s life hangs in the balance?

Maybe you care for someone whose disease moves in agonizing increments, one stolen memory at a time. Your caregiving tasks might seem so light that you don’t notice the build-up of burden. And so you don’t think you NEED to give yourself any special attention.

Trust me, you STILL need to practice healthy self-care. Caregivers risk endangering both their physical and mental health when they fail to take care of themselves. I know. It happened to me. During my husband’s cancer journey, I failed to take care of myself.

Sure, I cashed in on a massage gift certificate that some kind soul gave me. One visit to the massage therapist in a year-long caregiving stint does not equal self-care. I quit exercising and started drowning my sorrows in eBay therapy (if anyone ever comments on the number of Longaberger baskets in my house, I might shrug and say that I like baskets. Now you know the real reason). When eBay therapy wouldn’t suffice, I’d try Häagan Dazs® therapy.

I should have joined a support group. That would have provided a much-needed self-care element to my life. And I never should have given up on exercise (although stress seemed like the perfect excuse for giving up something I didn’t like very much to begin with).

The third Wednesday of each month we’ll share our stories and advice about caregiver self-care. Don’t let anyone convince you that the term ‘caregiver self-care’ is an oxymoron. It’s something that we need to systematically build into our caregiver journeys in order to avoid things like caregiver PTSD and compassion fatigue.

I Challenge YOU!

I challenge you to take care of yourself! It’s so important to really take care of ourselves, even when a loved one is in crisis. If you’re interested in finding out more, join the 5-day Self-Care Challenge for Caregivers. It’s free, it’s easy, and in just 25 minutes a day (NOT all at the same time), you can take proactive steps to caring for yourself.

Sign up to the take the 5-day Self-Care Challenge for #caregivers. YOU need to stay healthy in order to care for others! Click To Tweet

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Join the 5-Day Self-Care Challenge for Caregivers and start taking care of YOU!

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Guidelines

In order to make this link up user friendly AND pertinent to caregivers and their needs, please make sure that what you link up follows the guidelines for the week. This week is for SELF-CARE FOR CAREGIVERS. If you aren’t sure if your link is appropriate, feel free to email me at anita at blessedbutstressed dot com and ask!

We will delete links that aren’t on topic in order to keep the link up a true community resource. We WILL contact you first and let you know that we will remove your link. For non-caregiving related links, we invite you to participate in the Inspire Me Monday link up over at www.anitaojeda.com.

By linking up, you agree to receive weekly reminders about the link up.

Do look for the caregiver boards on Pinterest.

Do link up more than one post!

Join our Facebook community, too! It’s easy, just click that button over on the right! —->

Community Spotlight

This week’s spotlight shines on Dr. Michelle Bengtson, a neuropsychologist, writer, and caregiver. She interviewed a dementia caregiver, and in this post, the caregiver shares resources for dementia caregivers. Make sure you check out both the article and Dr. Bengtson’s blog!

Link up Schedule:

1st Wednesday of the month: Caregiver Stories

2nd Wednesday of the month: Resources

3rd Wednesday of the month: Caregiver Self-care

4th Wednesday of the month: Caregiver Encouragement

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Five Valuable Resources for Caregivers in Crisis

How to Harness the Power of Social Media

social
Other People Can Become Your Most Valuable Resource

When disaster strikes, how does a person decide what to share on social media 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 16 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 networks had recently made their debut). 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. Family members, friends, and even strangers can become a powerful resource for caregivers.

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:Click the link to find five valuable resources for caregivers. #socialmedia, #caregiver, #caregivers, #cancer

  • 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.

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What’s YOUR Caregiver Story?

Caregiver Connections: Caregiver Stories

loneliness
Feeling Lonely? You’re Not Alone!

Whether you’ve eased your way into caregiving for a parent as he or she aged or dropped into the tumultuous sea of caregiving by an unforeseen event (cancer, accident, etc.), you probably know about caregiver loneliness.

Life goes into hyper-focused slow motion in your immediate sphere and seems to keep flying by at warp speed everywhere else. You lose touch with friends. Maybe you question if you even HAVE friends. Days away from work seem more like years. Once easy decisions require more brain power than before. You can’t sleep or you sleep too much. You. feel. so. alone.

But you AREN’T alone! Hundreds of thousands of other caregivers struggle with the same feelings and thoughts. And guess what? YOU can help them! Share you story. Find community. You don’t have to attend a caregiver counseling group (although, if its available in your area, it might prove helpful). Just sharing your story in a safe place goes a long way towards lighting up the lonely edges of your existence.

Even if you no longer care for someone, you might still suffer from ‘Chemo Brain by Proxy‘ (aka, stress or PTSD). Sharing your story helps you process your experience.

Stories from the Caregiver Trenches

Are you a caregiver? Caregiver loneliness can eat away at your soul. Find community with other caregivers. #cancer, #dementia, #mentalillness, #stroke,Rather than spotlight just one story this month, I wanted to share a sampling of stories from bloggers and caregivers that I’ve met over the years.

Karen Sebastian, the ‘Hope Lady,’  has two great series on caregiving, one for the caregiver needing hope, and another for the caregiver who needs to start taking care of herself.

Martha Brady, a retired nurse who cares for her husband, writes about caregiving and grace over at GrittyGrace.com. She wrote an excellent series about self-care for caregivers.

Dr. Michelle Bengtson, a neuropsychiatrist and caregiver, has a plethora of encouraging and enlightening posts for caregivers. You can find them on her blog, Hope Prevails.

When you start feeling isolated and lonely in your caregiving journey, I encourage you to reach out and look for others in the same boat. We have a series of guest posts on the blog from other caregivers in the trenches. You can find their stories here.

Link up Details

Guidelines

In order to make this link up user friendly AND pertinent to caregivers and their needs, please make sure that what you link up follows the guidelines for the week. This week is for CAREGIVER Stories.  Share a link to your story of what it’s like to care for someone else (or have someone else care for you). If you aren’t sure if your link is appropriate, feel free to email me at anita at blessedbutstressed dot com and ask!

We will delete links that aren’t on topic in order to keep the link up a true community resource. We WILL contact you first and let you know that we will remove your link.

For non-caregiving related links, we invite you to participate in the Inspire Me Monday link up over at www.anitaojeda.com.

By linking up, you agree to receive weekly reminders about the link up.

Do look for the caregiver boards on Pinterest.

Do link up more than one post!

Join our Facebook community, too! It’s easy, just click that button over on the right! —->

The whole point of the link up is to make connections and form community with other caregivers, so don’t forget to visit the person who linked up before you as well as the person who linked up after you.

If you read something that moves you, share! Tweet, pin, share on Facebook, whatever it takes to draw others into to our caregiver stories. All too often, caregivers suffer in silence because they don’t think anyone cares to hear their voice. We care! If you’d like to join the Caregiver Connections Pinterest Board (so you can pin your caregiver-related posts), just drop me an email at anita at blessedbutstressed dot com.

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Sometimes It’s Okay to Hide

Caregiver Encouragement

Hiding from CancerWhen the sight of the red-blood-cell bag would become too much, or the pokes too many, or the smell of the chemotherapy would overwhelm my nose—I wanted to escape. To hide. With my whole being I wanted to run.

Run far and run fast.

But he was four. How could I run? So I stayed.

But sometimes, when he drifted off to sleep, his lashless, blue-veined eyelids closed, I would take a walk. Just around the corner from, but on the same floor as the children’s cancer ward, was a “Meditation Room.”

I can still see it.

Carefully constructed to not cater to any specific religion or belief, it was a small room with soft lighting glowing out from behind non-descript wooden cutouts.

I can still feel it.

The benches were hard, as if to remind one that staying long was not an option, but they were wide, in case someone needed to curl up and cry.

I can still smell it.

Some sort of citrusy scent that did not allow a hint of chemotherapy, blood or medications. Someone had made an effort to make the room smell fresh, but somehow a touch of “hospital” remained.

I can still hear it.

Thickened walls meant you couldn’t hear the hospital noises but the soft lighting was still fluorescent because the buzz never stopped. Hospital announcements would still intrude on the silence, because they were too important to screen out.

Meditation RoomIf someone was already in there unspoken rules were observed. No talking. Pay no attention to red-rimmed eyes. Do not use cell phones. Acknowledgement was fine, but do not talk about your ill child. Nod and move to your own isolated spot.

Hiding from reality. Hiding from fear and from the cancer ward – that place where joyful and optimistic children were dying.

Sometimes I felt guilty. Hiding like that. Was I running? Avoiding? Selfish?
Oh I don’t think so. I searched for my Creator, my Physician, my Savior and my Friend. I needed those moments on those hard benches with the soft lighting and the soft buzzing and the soft silence in order to face the hard days ahead.

Sometimes we need our soft and loving God to face whatever is ahead.

Sometimes we need our soft and loving God to face whatever is ahead. #cancer #caregiving #cancerencouragement Click To Tweet

Don’t forget that, my friends! Hide away, even if just for a moment, and renew yourself in Him!

Psalm 91:

He who dwells in the shelter of the Most High
will abide in the shadow of the Almighty.
2 I will say[a] to the LORD, “My refuge and my fortress,
my God, in whom I trust.”
3 For he will deliver you from the snare of the fowler
and from the deadly pestilence.
4 He will cover you with his pinions,
and under his wings you will find refuge;
his faithfulness is a shield and buckler.
5 You will not fear the terror of the night,
nor the arrow that flies by day,
6 nor the pestilence that stalks in darkness,
nor the destruction that wastes at noonday.
7 A thousand may fall at your side,
ten thousand at your right hand,
but it will not come near you.
8 You will only look with your eyes
and see the recompense of the wicked.
9 Because you have made the LORD your dwelling place—
the Most High, who is my refuge[b]—
10 no evil shall be allowed to befall you,
no plague come near your tent.
11 For he will command his angels concerning you
to guard you in all your ways.
12 On their hands they will bear you up,
lest you strike your foot against a stone.
13 You will tread on the lion and the adder;
the young lion and the serpent you will trample underfoot.
14 “Because he holds fast to me in love, I will deliver him;
I will protect him, because he knows my name.
15 When he calls to me, I will answer him;
I will be with him in trouble;
I will rescue him and honor him.
16 With long life I will satisfy him
and show him my salvation.”

Community Spotlight

Today’s spotlight shines on Barbara and her post about caring for the elderly.  Check in out over at Stray Thoughts: Click here!  

Guidelines

In order to make this link up user friendly AND pertinent to caregivers and their needs, please make sure that what you link up follows the guidelines for the week. This week is for ENCOURAGEMENT FOR CAREGIVERS.  Share a link that will encourage a caregiver. If you aren’t sure if your link is appropriate, feel free to email me at anita at blessedbutstressed dot com and ask!

We will delete links that aren’t on topic in order to keep the link up a true community resource. We WILL contact you first and let you know that we will remove your link.

For non-caregiving related links, we invite you to participate in the Inspire Me Monday link up over at www.anitaojeda.com.

By linking up, you agree to receive weekly reminders about the link up.

Do look for the caregiver boards on Pinterest.

Do link up more than one post!

Join our Facebook community, too! It’s easy, just click that button over on the right! —->

The whole point of the link up is to make connections and form community with other caregivers, so don’t forget to visit the person who linked up before you as well as the person who linked up after you.

If you read something that moves you, share! Tweet, pin, share on Facebook, whatever it takes to draw others into to our caregiver stories. All too often, caregivers suffer in silence because they don’t think anyone cares to hear their voice. We care! If you’d like to join the Caregiver Connections Pinterest Board (so you can pin your caregiver-related posts), just drop me an email at anita at blessedbutstressed dot com.

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Sleep for Caregivers

More than a far-off dream!

Sleep can be something caregivers dream about. Let’s make it a reality!

Sleep.

Lying in bed, afraid to let go.

Visions of blood consuming the house (diagnosis of Leukemia).

Listening for breaths, restlessness or stirring.

Worry of fevers and rush trips to the ER.

Sleep.

Heart pumping fiercely instead of relaxing.

Memories of fighting for life in those mid-night hours.

Rummaging through to-do lists and appointments for tomorrow.

Wonder if a person can really take one more day of this.

Sleep.

Craving…Demanding…Eluding caregivers.

It’s a caregivers nightmare – that constant loss of sleep.  Sometimes the lack of sleep is demanded by schedule and other times ordered by anxiety.  Caregivers live on high alert when things are catastrophic and worry when things have slowed to a waiting crawl.

Here’s the deal: in order to get sleep, caregivers have to let go.

In order to sleep, #caregivers have to let go! #cancercaregiving #caregiving Click To Tweet

A few moments of time or an entire night.  Our brains and our bodies require rest and we must let go.  Our own systems won’t be able to handle prolonged loss of sleep.  So how will we care for our patient?

Sleep was my biggest dilemna as a mom to a four-year-old with leukemia.  How do I choose sleep?  Ten years after chemotherapy, I still do not completely have the answer to that question – because I would never give up the time I spent helping my son.  So how do I let go during something catastrophic?  Yeah, I don’t have all the answers, but I do have a few suggestions:

  1.  Accept help with menial things so your time goes more where you want it.  Let someone mow your lawn or wash some dishes instead of staying up late to finish those jobs.  Most people are happy to help while you’re taking care of your loved one.
  2. Choose what to fight for and maintain, and what to let go.  It’s so hard to let things go when living in denial.  But really, who really cares whether or not you send out those Christmas cards anymore?  Let it go…
  3. Exercise.  No matter how tired.  Do SOMETHING to work off that excess adrenaline that stockpiles in our bodies when we love the person whose life is on-the-line.
  4. GO TO BED.  As ridiculous as that sounds, I found it astonishingly hard to do.  Just one more task, just a few more minutes, avoid the nightmares.  Keep going.  Refer here to numbers one through three.  GO TO BED

Seriously.  Grab moments and let your brain relax.

 

Community Spotlight:

This week’s spotlight shines on us from Jill at MemoryMinders  She shares with us:  Refill Your Leaky Bucket – some ways to take care of yourself and get refilled a bit! Click here to read some great suggestions.

Link up below to get your blog highlighted!

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Caregiver Resources – Write Things Down

For when your mind stops spinning.

New caregivers: Write down the advice you receive – it might come in handy later when you can deal with it!

Write things down.

That’s probably one of the biggest and best pieces of advice I can give any caregiver.

I distinctly remember sitting across from the Head Oncologist of my four-year-old son’s teams (three groups) of doctors.  He was an attending physician/professor and coordinated two hospitals’ treatment protocols in connection with a local university.  Impressive?  All I remembered about him (the preceding information came later) for the first year of treatment was that he was bald and shot words at me like lightningClick here to read more about that!

My mind reeled that first week of diagnosis, days of exams including some pretty horrific-sized needles, some life-saving moments and then launching the treatment protocol.  I remember nurses and doctors advising me to “take care of myself.”  They also offered many phrases into the air while they zipped in and out of our isolated room, scrubbing thoroughly and muttering about This Society or That Resource.  I heard them.

The words were just beyond my grasp.

We floated along in the surreal fuzz that envelops parents of critically ill patients like a shroud.

Children’s Miracle Network was mentioned.

Candlelighters came up.

Make-a-wish foundation, I heard, but given the children on the ward that were getting wishes granted, I assumed it was for the dying.  In the denial stage I was in, it never occurred to me to check into it.  My child couldn’t die…could he?

Ford Family Foundation brochures were in the parent waiting room.

We fought daily for the life of our child.  These phrases continued flying over our heads.

We missed them.

Four years later, my son, with normal hair, energy and health, was watching TV with this wearied mom when something about a kid with leukemia going to Disneyland through one of the above-mentioned charities.  Why?  Because the kid wished for it.

“Mom!” exclaimed Andrew, “Why don’t I get to go to Disneyland?  I had leukemia!”

To this day, I don’t have a justifiable answer to that.  It’s simply that I was so overwhelmed with saving my son’s life, I never thought of getting things along the way.  By the time I did, no one was talking about it any more.

Man, I wish I would have written stuff down as it was thrown at me over the top of a mask, across the exam table or waved at us as we exited the hospital.

The resources are there.

Write them down and the next time someone asks you how they can help you?  Hand them the list and have them check into it for you!

 

Caregiver Spotlight

We hope you click through on some of the links above – these are great resources!

 

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A Staph Infection filled with Fear

Fighting the infection of fear with the antibiotic of trust

Fight infection with God’s antibiotic of peace.
Exodus 14:14

My boy has a staph infection.  Undetermined source. Scary. Fever-inducing. Icky. Doctor monitored.  Antibiotic drowned.

But it’s OK.

Because my boy is 17 and cancer free.

As awful as a staph infection is now, it’s not what it used to be!

When Andrew was four, we drove home from my high school reunion, happy to have been around people for the first time since Andrew’s diagnosis of Acute Lymphocytic Leukemia just a few months prior.  Half-way through the trip, Andrew’s temperature went sky high and we immediately called the oncologist who called the nearest hospital.

We raced into the ER and were rushed through triage where a tiny spot was found on Andrew’s side;  From there it was only a matter of moments until Andrew was ensconced in an isolation room with an antechamber that required any and all who entered to fully gown and mask up.

Trauma.

The surreal feeling of a relatively new cancer diagnosis was compounded by the head-to-toe garb required just to read Andrew a story from a sanitized book.  Visitors were limited to just daddy and mommy, which was tough as we were hours from home and had our girls with us.

Fear invaded worse than the infection.

Where did he get that little dot in his side?  We’ll never know for sure, although we like to blame it on the slide.  All we know is that it ballooned up and his temperature raged for days and he remembers absolutely nothing about the entire time, because, he says,

“It’s selective memory.”

Now Andrew sits in the living room, his cheek swollen to twice it’s normal size.  He has a sore spot from four injection sites and a large bottle of infection killers mocks me from the counter.  Andrew shrugs, it’s no big deal.  Yeah, it hurts, but he’s been through worse.

For him, it’s no big deal.

But I’m the caregiver from those years when he was four, five, six and seven and a staph infection meant life or death with only moments of antibiotics making that difference.  I’m the one that gowned up to enter my boy’s room.  I sent the girls home with friends in order to care for my boy.  Medication time was routine and countless bottles sat on my counter.

My husband and son texted from Urgent Care on Sunday:  “It’s a Staph infection.  Good thing we came in.  Dr is concerned but will try shots and meds rather than hospital for tonight.”

No big deal.

So why did I sit down and cry?

Apparently words like “staph” infection and “hospitalization” are trigger words for me.  Actually, I have many trigger words – cancer, Leukemia, chemotherapy.  The list goes on.  I kick up my fight-or-flight response with very little provocation, it seems, and it all stems from those years of fighting for my son’s life.  Years of trying to be strong.  Months of wading through phases of treatment. Weeks of waiting for meds to kick in.  Days of waiting for blood results.  Hours of hospitals, doctors and nurses.  Those memories trigger my fears.

Those trigger words are like a nasty, sick infection. A staph infection that gets inside and eats away anything good and kills anything within it’s reach.  They can make my heart race.  Trigger words can rob my soul of peace.  Fear can invade worse than any infection.

Except, my caregiver friends, we have the antibiotic.

Jesus assures us of the End of the battle with sickness and despair.  I can take a rest from my caregiving stress and relax, knowing that God has got me, and even more importantly, to this mom, He’s got my boy.

Even in the midst of caregiving, take a moment and relax in God’s presence and in His peace.  Let the infection of fear seep out of your heart and soul.  God will never leave you nor forsake you.

When the #staphinfection of fear hits you, #caregiver, hang onto God's antibiotic! #caregiverconnections Click To Tweet

Today’s featured post from Caregiver Connections is here!  Click and read and then link in your own post for a chance at being featured!

 

Guidelines

In order to make this link up user friendly AND pertinent to caregivers and their needs, please make sure that what you link up follows the guidelines for the week. This week is for CAREGIVER Stories.  Share a link to your story of what it’s like to care for someone else (or have someone else care for you). If you aren’t sure if your link is appropriate, feel free to email me at anita at blessedbutstressed dot com and ask!

We will delete links that aren’t on topic in order to keep the link up a true community resource. We WILL contact you first and let you know that we will remove your link.

For non-caregiving related links, we invite you to participate in the Inspire Me Monday link up over at www.anitaojeda.com.

By linking up, you agree to receive weekly reminders about the link up.

Do look for the caregiver boards on Pinterest.

Do link up more than one post!

Join our Facebook community, too! It’s easy, just click that button over on the right! —->

The whole point of the link up is to make connections and form community with other caregivers, so don’t forget to visit the person who linked up before you as well as the person who linked up after you.

If you read something that moves you, share! Tweet, pin, share on Facebook, whatever it takes to draw others into to our caregiver stories. All too often, caregivers suffer in silence because they don’t think anyone cares to hear their voice. We care! If you’d like to join the Caregiver Connections Pinterest Board (so you can pin your caregiver-related posts), just drop me an email at anita at blessedbutstressed dot com.

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