The Cost of Caregiving: Losing Your Place

placeCaregivers Lose Their Place

When Pedro received a non-Hodgkin’s Lymphoma diagnosis in the Spring of 2002, I had no idea that I’d joined a community that had no place to call home. Hundreds of thousands of family caregivers—from teenagers to octogenarians—belong to the community, but we often feel as if we don’t fit in.place

In the hospital, we don’t speak the vocabulary that the medical professionals sling around as if we understand. At church, we become “So-and-so’s unfortunate mother/father/wife/husband/sister/brother/child.” People stop asking us how our loved one fairs, because, well, who wants to hear bad news all the time?

Some caregivers give up their place and their jobs to move home to take care of aging parents. Others relocate their family or add extra travel to their already busy lives.

Worst of all, we focus all of our energy on the one we care for—forgetting that we must take care of ourselves first, or we will have nothing left to give.

A Place for Caregivers

Whether you currently care for someone, or consider yourself a ‘recovering caregiver,’ this place is for you! We’d like to invite you to poke around the blog and see if any of the stories resonate with you. Even though caregiving feels lonely, you are NOT alone.

If you prefer a more interactive community, join us on Facebook at our secret Blessed (but Stressed) caregiver’s group. The community is small right now, but we’d like to create a space for current and recovering caregivers to support each other.

If you know a #caregiver that could use some #community, send them our way! Click To Tweet

If you’re not a caregiver, you might know one who would enjoy the community—send them our way! Together, we can share our stories and learn how to take care of ourselves so that we can better serve the ones we love.

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!

Don’t forget to visit the other #InspireMeMonday host site: www.anitaojeda.com

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Shadowing in Alzheimer’s: Two Sides of a Coin

National Alzheimer's Disease Awareness Month

Alzheimer's
The Problem With Alzheimer’s

When a beloved family member receives an Alzheimer’s diagnosis, long-term care is a big issue in the United States. This is especially true when the recipients and their family members have to contend with a condition as devastating as Alzheimer’s disease. Although caregivers have unlimited access to resources, such as long-term care consumer guides and various studies, no one can truly be prepared for the toll that Alzheimer’s disease and other types of dementia can take.

Currently, more than five million Americans are living with Alzheimer’s. And while this number may be already considered too many, research shows that the number could rise to 16 million by 2050. It is the sixth leading cause of death with 1 out of 3 seniors reported to die from the disease. In fact, it kills more than breast cancer and prostate cancer combined.

Alzheimer’s disease gets worse over time, and it affects the family caregivers and the diagnosed alike. Relationships may change, and roles may be reversed. It can take a lot from both sides, and truthfully, it often does. After all, the symptoms and impacts vary that it is easy for anyone to be overwhelmed by the whole situation. One such part of Alzheimer’s is Shadowing.

Shadowing in Alzheimer’s is when the people with the disease constantly trail their caregivers. This is when they mimic their caregivers, go wherever the caregivers go, or become very anxious when their caregivers are not in sight.

From the Perspective of the Person with Alzheimer’s Disease

Often the root of shadowing is confusion and fear. Individuals with Alzheimer’s disease or other types of dementia are going through drastic changes. What used to be familiar to them becomes completely alien. And when they cannot make sense out of their surroundings, it can be quite terrifying. They may easily become fearful and anxious about their environment. And to feel safe and calm themselves, they tend to follow their primary caregivers around.

They become their caregiver’s perpetual shadow. Many relate this to the relationship of a small child and a parent. The child is completely dependent on the parent, and the latter’s presence enforces a sense of security.

Through the Eyes of the CaregiverCaring for someone with Alzheimer's can be discouraging and frustrating--especially when you need a break. Try these two simple solutions to help your loved one through transition times.

Caregiving can take its toll on an individual in various ways. It can affect a person physically, emotionally, financially, and mentally, which is why taking breaks are often a must. However, for caregivers to individuals with Alzheimer’s, taking time off may be difficult to achieve. When their care recipients are shadowing them constantly, it is easy to feel overwhelmed and frustrated. And when this happens, their feelings of guilt can multiply.

It is important to note that when these feelings arise, caregivers must remember that their feelings are valid. They can feel frustrated or overwhelmed by the whole scenario. They must acknowledge their limitations and take active measures to address the situation.

#Shadowing in Alzheimer's is a manifestation of fear and anxiety. #caregivers #alzheimers Click To TweetBear in mind that shadowing is a manifestation of fear and anxiety. The root of these two emotions must be the one that caregivers ought to address and not the behavior itself. Caregivers can encourage feelings of safety and security through activities that work best for the specific individual.

They could record their own voice conveying reassuring messages for playback to the patient during the caregiver’s absence. In addition, caregivers can identify therapeutic music that their loved one with Alzheimer’s enjoys listening to. No two cases are the same, so the caregivers must be creative in finding a way to ease the stress of their loved ones with Alzheimer’s disease.

Guest Bio

Samantha Stein is an online content manager for ALTCP.org. Her works focus on key information on long-term care insurance, financial planning, elder care, and retirement. In line with the organization’s goal, Samantha’s work highlights the importance of having a good long-term care plan, which includes requesting a long-term care insurance quote to securing comprehensive coverage.

 

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!

Don’t forget to visit the other #InspireMeMonday host site: www.anitaojeda.com

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Are You Willing to Let God be Sovereign in the Situation?

A Caregiver Looks at Psalm 91: Part II

sovereign

A Caregiver Looks at Psalm 91: Part II

In part one of this series we looked at the first four verses of Psalm 91—a well-loved Psalm that I have a problem with. Join me as I work through the next two verses and try to figure out what they mean for the caregiver.

We left off at verse four, with the understanding that if we stay close to God, he will shield us from the lies of the devil. During my caregiving journeys, I often found myself worn down, worn out, and unable to cope in private. I thought I needed to take on the care of my very ill husband and shoulder all the other daily burdens as well. I forgot that God is sovereign.

Coping in public seems like a given. Caregivers don’t want to draw attention to themselves and their needs because they seem petty (even if they aren’t) in light of the bigger needs of the one they care for.

#Caregivers don't want to draw attention to themselves and their needs because they seem petty… Click To Tweet

What Does Fear Really Mean?

5 You will not fear the terror of night,
nor the arrow that flies by day,

In verse five, God doesn’t promise that terrors won’t lurk. He promises that we won’t FEAR them. The dictionary tells us that ‘fear’ as a noun is “an unpleasant often strong emotion caused by anticipation or awareness of danger.” As a verb, ‘fear’ is “to be afraid of: expect with alarm.”

In other words, when we trust in God and stay close to him, we don’t let the devil’s suggestions of the worst-case scenario take over our imaginations and cause us extra agony.

During my first caregiver journey, I often let worries about the future drag me down. In those quiet moments late at night, the lies of the evil one nibbled and scampered inside my head like rodents in the walls. I had to make a conscious effort to allow God’s light into my mind to chase away the mice of despair.

Gradually, I learned that I didn’t fear the terrors of night, nor the arrows of circumstance and progression of disease that assaulted me by day. This knowledge armed me for my second caregiver journey.

The devil loves to point out our shortcomings and failures through the behaviors and actions of… Click To Tweet

What’s With Pestilence and Plagues?

6 nor the pestilence that stalks in the darkness,
nor the plague that destroys at midday.

My second caregiver journey provided the perfect opportunity for falling for the devil’s lines: “If only you would have been a better parent.” and “She’s acting like this because you failed.”Life is short. Pray hard. A caregiver looks at Psalm 91 http://wp.me/p2UZoK-1FY

After all, when one’s offspring implodes on a public forum (Facebook and YouTube), pretty much the entire known world knows. Our children’s actions highlight all that we did (or didn’t) do as parents. All too often we measure ourselves by our children’s actions—even if our children have reached adulthood.

I like to think that the ‘pestilence’ and ‘plague’ that the psalmist uses here have more to do with those lies of the evil one. It would have been easy (and natural) for me to roll up into a ball of dejected depression as I watched Sarah make a series of horrible choices.

I could have rejected God’s sovereignty because he didn’t provide protection for Sarah on my terms. He COULD have saved her from her bad choices and helped us figure out her diagnosis much earlier. But he didn’t.

I had a choice—either accept God as the sovereign in the situation and daily affirm his right to allow things that I didn’t like to happen, or reject God.

We have a choice: accept God as sovereign & affirm his right to allow things that we don't… Click To Tweet

Choosing God’s sovereignty kept me sane. Sure, I spent a lot of time in tears and on my knees. My relationship with God got stronger as I relied on him to help me avoid the pestilence and plague of the devil’s recriminations.

The devil keeps plugging away, trying to undermine our relationship with God. We have a choice—call out to God in the darkest night or in the light of day, or let the devil sink us with his lies.

Caregiver Applications

1. With God as our sovereign, we don’t have to fear the terrors.
2. We don’t need to work out the worst-case scenarios and stew about them.
3. The devil likes to jab at our weak spots and make us blame ourselves for other people’s actions. Just say, “No!”

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!

Don’t forget to visit the other #InspireMeMonday host site: www.anitaojeda.com

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

breathingLosing My Ability to Breathe

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

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

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

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

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

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

“Does it help?” she asked.

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

A Different Kind of Specialist

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

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

“Really?”

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

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

Caregiver, Beware Your Breathing

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

 

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!

Don’t forget to visit the other #InspireMeMonday host site: www.anitaojeda.com

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How to Bring Joy to a Caregiver

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

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

Emotional Caregivers

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

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

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

Physical Caregivers

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

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

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

Crisis Caregivers

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

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

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

All Types of Caregivers Appreciate Affirmation

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

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

Inspire Me Monday Instructions

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

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

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

3. Spread the cheer THREE ways! Tweet something from a post you read, share a post on your Facebook page, stumble upon it, pin it or whatever social media outlet you prefer–just do it! Please link back to this week’s post or add the button to your post so that we can spread the inspirational cheer :).

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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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Caregivers for Life

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

Loving hands are caregivers for life

Loving hands are caregivers for life

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

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

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

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

“No, no, no, no, no.”

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

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

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

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

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

He looked up from sorting his keys.

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

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

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

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

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

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

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

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

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

Why do I do this?  I thought to myself.

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

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

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

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

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

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

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

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

“No, no, no, no, no.”

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

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

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

 

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

Inspire Me Monday Instructions

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

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

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

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

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

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All Those Comments

Which voice will be yours?

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

“God must have needed you to slow down.”

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

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

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

“If you would change her diet…

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

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

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

That’s community.

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

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

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

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

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

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

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

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

This is community.

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

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

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

 

Inspire Me Monday Instructions

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

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

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

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

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

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Hope for Caregivers Found in Hope Prevails

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

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

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

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

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

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Caregiver Self Care Tip #1–READ!

Reading Self-care tip #1

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Religious/Self Help

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

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

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

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

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

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

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

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

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

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

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