6 Ways to Ease Caregiver Strain

When the latest issue of Nursing 2013 arrived in my mailbox a decade ago, the title article caught my eye immediately:

Easing the burden on family caregivers

I'd been a full-time caregiver of a high-level quadriplegic son for sixteen years at the time. I loved my job, but I was always eager to learn anything to ease the workload. I grabbed magazine and scanned past the clinical stuff to get to the end. I wanted to see what their ideas were for "easing the burden."

As I guessed, there was no magic bullet, no miraculous new methods for helping family caregivers. There were, however, some things worth noting. Today, twenty-six years into caregiving, I've pulled out some of their ideas and added a few things we've learned over the years to share with those who care for loved ones.

1. Don't be afraid to ask others for help.

Caregiving is a marathon. No one can take on the crush of duties day after day after day without some respite or assistance. It's hard to ask for help, to feel needy. But those around you may wish they could help somehow and just not know what to do. If you're not comfortable with having them take over the actual caregiving duties, you could see if they would be willing assist you in chores once in a while. If you have the financial resources, you can also pay for such chores as yard work and picking up groceries to save valuable time and energy.

Getting help not only relieves the physical burden, it allows both caregiver and patient a chance to interact with others, a vital necessity for both physical and emotional health.

2. Think in terms of team-building,

After Kevin's initial injury and the weeks in the hospital and rehab, we all felt like victims of the system. A lot of good people worked hard to help our son survive. The medical system is an institution, though, and institutions often must sacrifice individual attention to accomplish the most general good. 

In the process, Kevin - and we - often felt marginalized and manhandled. We responded by closing ranks around him and getting home as soon as possible. As he improved, we couldn't wait to get to the safety of home and do things in a way best for us and our son. 

At home, we developed our own schedule and cared for our son by ourselves for many years. After more than a quarter century of caregiving and suffering some health challenges of our own, we knew it was time to get help. Though we still do most of the work, we now have a nurse come in once a week. She, in turn, has been able to find us others to help ease the burden. She is, in fact, the one who has championed the idea of developing a "team." 

Depending on the type of home situation you have, let others make whatever contribution you feel comfortable relegating to them. Homes certified by the state will need to have substitute caregivers meet certain qualifications.

But by all means, let others mow the grass and bring you groceries. 

3. Adapt an assertive coping style early on. 

This is probably the most crucial thing we had to learn. Everybody needs an advocate when they are seriously ill or injured. In the fog of a medical crisis, it's easy to accept whatever the medical providers tell you, because they are the professionals. But they don't know your loved on like you do and won't care nearly as much. Being assertive will actually reduce your sense of vulnerability and helplessness. Just be sure you listen to both your loved one and the professionals and understand the landscape before you charge in.

Those who are naturally more passive are more susceptible to crumbling under the burden of caregiving. They tend to stay isolated, worry more, ask fewer questions, and develop a negative attitude. A healthier coping lifestyle involves actively taking charge of the situation, asking questions and pursuing the answers that will benefit both the caregiver and the patient.

4. Learn all you can.

Understanding what is happening to your family member is crucial to providing the best care with the least amount of emotional strain. Research the disease process or injury, available treatments, and the usual prognosis. It's especially important to know such basic techniques as how to correctly turn a person in bed, infection control, and bed sore prevention. Find out what, if any, community, church, and government resources are available.

5. Be kind to yourself.

Caregivers often put the needs of others ahead of their own. In order to take good care of a loved one, you need to be good to yourself, as well. This is easier said than done, since it's often hard to find time for anything besides work. Try to give yourself permission to care for you. Your family member needs for you to be well.

Hospital emergency departments employ a term called "triage" to decide which patients should be treated first. The idea is to put the most important cases at the front of the line. Do this with your life. Develop your own triage system to care for the most crucial chores in your day. If something can wait until tomorrow and you're exhausted, put it at the end of the line. This works well for emotional issues, too. Don't waste your tears on things that aren't worth your energy.

6. Talk to someone.

Develop an emotional support system. Have at least one or two people who you can call when you need to cry, vent, or just talk. Don't just run to those who will agree with everything you say, though. Develop friendships with those who will listen and speak the truth. It's a two-way street; engaging with others gives our lives new perspective. It may even ignite a fresh appreciation for all we have gained through our own situations.

 Photo Courtesy Erik Thorson 2023

Embrace the Pain

 

       

The Witch of Buchenwald

In much wisdom there is much grief, and increasing knowledge results in increasing pain.

-Ecclesiastes 1:18 NASB

Ilse Koch was the wife of Karl Koch, commandant of the notorious Buchenwald Nazi concentration camp during World War II. Not content to be a quiet military wife, Ilse immersed herself in a decadent lifestyle at the camp. The Kochs lived lavishly at Buchenwald, eating and drinking and partying as prisoners around them starved. It was reported that she and her husband even hosted orgies for the SS guards.

Ilse soon became an SS Aufseherin, or overseer. She was a reputed sadist who was so cruel that she was dubbed the "Bitch of Buchenwald," a corruption of the German Die Hexe van Buchenwald, "Witch of Buchenwald." She enjoyed tormenting prisoners as she rode around the camp on her horse.

She had a special fascination with tattoos. She singled out prisoners whose tattoos caught her eye and ordered them killed by the SS guards. Their skins were tanned, from which she had custom lampshades, book covers, and gloves made for her. She was reportedly especially fond of a purse made of human skin. Another of her hobbies was collecting shrunken human heads.

Waste not, want not. 

It took a world war to rip the façade from a regime so brutal that it still shocks the conscience of civilized nations. When the nearby town of Weimar, Germany, was liberated by Allied forces, General Patton forced its citizens to march past the piles of corpses, the crematoria, and the grisly body organ samples from Buchenwald to behold the holocaust that happened in their land as they looked the other way.

See no evil. Hear no evil. Speak no evil.

For years I wondered how the world could not know what was happening in Nazi Germany. Now I understand. They chose not to see.

Knowledge is painful.

It tears at our hearts, our souls, and our conscience. It brings us to our knees and confers upon us the responsibility to act. And it makes us vulnerable to loss, to retribution, to the criticism of others.

It's so much easier to live in ignorance.

The recent videos exposing the thriving business behind the abortion industry have ripped off the mask of what is happening behind the mask of "women's health." It revealed what we guessed at but didn't want to acknowledge:

Once a person is declared non-viable, nothing is sacred.

Today, people are being harvested for their organs and tissue. It's big business, it's the next logical step, and it's been done before.

Waste not, want not. 

Will we stand with the citizens of Weimar one day and be forced to look upon the injustice that swirled around us as we busied ourselves with distractions conveniently hiding the truth? Will we weep then for the lives we could have saved if only we had spoken up?

Or will we open our eyes now to seek out the wisdom of God?

Are we willing to discover what breaks His heart? Do we have the courage to embrace the pain?

If we can do this, we can become His hands and His feet and His voice on behalf of a new generation who is perishing.

Threads

For You formed my inward parts; You wove me in my mother's womb.  - Psalm 139:13

You're Complicated.

You probably guessed that. You may have even been told that a few times by a frustrated friend, co-worker, or family member. You may not have realized, though, just how complex you really are.

According to National Geographic, the average human body contains thirty trillion cells. 1. Each individual genome, or set of instructions for the development and operation of one person, contains approximately three billion base pairs of the chemical code that comprise our DNA, attached to twenty-three pairs of chromosomes. 2. This chemical code determines our sex, what we will look like, and much more. That's why it's called the master blueprint of the body. 3.

There is, in fact, nothing simple about the "simple cell." Each individual cell in your body is a finely-tuned factory working closely with the other cells of the body to sustain your life. You are not generally aware of the incredible processes of the systems keeping you alive, but you know when something isn't working correctly. The body strives to stay at a pre-set "normal," a state known as homeostasis, and even a small change in those processes can threaten your health or your life.

All that, and you're just one person.

On a planet filled with over eight billion people, it's easy to feel inconsequential. It's even easier to see others as inconsequential, especially if their lives don't meet society's expectations or they become inconvenient. The aged, the weak, the disabled, the unplanned, seem expendable from that perspective. What's one damaged life out of so many?

What's one broken thread in the fabric of God's plan for mankind?

Only everything. Just as every thread is needed to complete a work of art by a master weaver, so every life holds an important place in His plan for the world that is and the world to come.

Complexity points to a designer. A piece of art proves the existence of an artist. We all know that an intricately woven fabric is not made by dumping a bunch of thread on a loom. Someone must create it.

You're part of a grand design.

You and I are living threads in the hands of a Creator immense in power, limitless in imagination, and exquisite in the care with which He fashions His world. The skill with which He wove you in the womb, in all its unfathomable precision, pales beside the magnitude of the loom upon which He crafts history's story. 

Not only are you a vital part of that plan, so is every other human. Our job is not to decide the value of others on this earth, but to respect every person's value before God. Only He knows which threads will display the bold, royal colors of the kingdom, and which will carry the softer shades of grace. All are needed to complete the heavenly canvas upon which His story is revealed.

You matter. So does the homeless man on the corner, the baby with Down's Syndrome, and the elderly woman with Alzheimer's. May God forgive us for thinking we can choose the design for Him, for believing we know best.

My bones were not hidden from you when I was being made in secret, when I was being skillfully woven in an underground workshop.   

- Psalm 139:15 (GOD'S WORD Translation)

 1.http://news.nationalgeographic.com/2016/01/160111-microbiome-estimate-count-ratio-human-health-science/

2.https://www.genome.gov/11006943/human-genome-project-completion-frequently-asked-questions/

3.http://science.howstuffworks.com/life/cellular-microscopic/dna5.htm

What One "Useless Life" Taught Me

 

Just one old woman.

She lay against the stark white sheets of the gurney, her face gray and her hands bent awkwardly inward. A series of strokes had long-silenced her lilting Southern twang, and she communicated much as an infant does, her cries and grunts only distinguishable to the initiated. At the sight of me, her face contorted in a pathetic wail, brownish-red drool drizzling from one corner of her mouth.

"Pneumonia," someone at the nursing had said two hours earlier, when they first called to tell me that they were sending my mother to the hospital. I had quickly arranged my schedule to meet her at the emergency room when she arrived. My brother joined me in the waiting room, and we watched in vain for her arrival. Finally I checked again at the desk and discovered she had not yet been sent down from the nursing home.

I called the home and learned they were still awaiting the doctor's order to transport her down. We waited some more. I called the doctor's office to see what was happening. No one knew. After two hours, she finally landed in the emergency room, where she lay untreated as busy nurses and techs buzzed around the nurses' station. I could only guess they were waiting for doctor's orders to proceed.

She continued to cry. We continued to wait. I stood at her side, stroking her hair and murmuring meaningless words of comfort as I choked back angry tears.

No one ever came in the room to care for her.

Something was definitely wrong, and I finally lost my patience. I summoned my nerve and marched out to the nurses' station. "Is Doctor in the hospital?" I asked the startled nurses.

"Uh, I can try to page him for you," one of them ventured.

"Fine. I want to talk to him."

They exchanged nervous glances and had him on the phone in short order.

"This is Opal Soyk's daughter," I spit out. "We have been waiting hours in E.R. to have her treated. What the h--- is going on?"

My rare foray into profanity surprised even me. But Doctor was up to the fight. "I wasn't planning to bring her down here. She's only here because you insisted."

I was momentarily confused by the direction of the conversation. After all, I was only there because I had been called by the nursing home. What was going on? My mind raced to untangle what had happened as I asked, "Well, what are you planning to do for her?"

One worthless life...

"Nothing. I wasn't going to treat her. She's an old woman. Her life is useless, anyway. Why do you want to keep her alive?"

My soul exploded into little shards of red-hot pain as clarity came. He had planned to let her die untreated in her bed at the nursing home.

But this was not a useless old woman. This was my mother.

All my life, my mother had fought for me. Always, unconditionally, and without reservation, Mother had been my champion and protector. It was time to return the honor.

"That is not your decision to make," I retorted loudly, turning heads at the nurses' station. "Your job is to treat her."

Doctor hung up on me.

He never did bother to show up at the emergency room. But shortly afterward, she was admitted to the hospital. With proper treatment, Mother recovered from her illness and lived some time longer before dying peacefully at the nursing home with her family in attendance.

Who Is the Lord of Life and Death?

In the months leading up to her strokes, Mother knew something awful was happening in her body. She kept it mostly secret, but looking back, I realized that she was preparing us for the inevitable. One day she told me that if anything happened to her, she wanted every chance at life. She also said, "I changed your diapers; you can change mine."

I remembered those words after her strokes and was thankful to know her wishes. But I often agonized as I watched her body slowly wither away. I knew, though, that if we hastened her death, it would not be her choice, but ours. That would be neglect. Or worse.

In the long nights during those five years, I reminded God that she had taken Him to be Lord of her life. I asked Him to be Lord of her death.

The last night the nursing home called us, she had fallen into a coma after not responding to medication for a new infection. Her body showed the obvious signs of shutting down. We gathered around her bed, sang all her favorite hymns, and cheered her on. We read Scriptures to her, prayed quietly, and loved her into God's presence.

My mother taught me how to live. She taught me how to die. And she taught me that God is the Lord of both.

Every Life Matters

 

Welcome to the Impossible...

…the place where "there's no way forward" meets "God is enough."

In the rarified air of the unknown, we walk with feet of clay, scale crags on bloodied knees, and reach up to touch the face of God from the dirt.

In this place, every life is precious.

 Every tear is gathered into God's vessel, to be poured out upon the feet of the Savior who carries us each step of the journey home. Here it's okay to be broken. In fact, it's better, because...

The Lord is near to the brokenhearted
And saves those who are crushed in spirit. 

-Psalm 34:18

My mother's strokes in 1989 first introduced me to the world of disability. When a doctor wanted to "let her die" because, he told me, her life was "useless," I learned the fight for life is as primal as it gets. Her condition wasn't terminal, just inconvenient.

Those years prepared me for a harder path. In 1997, our son Kevin suffered a near-fatal spinal cord injury in Canada. He was instantly paralyzed from the neck down and stopped breathing. Someone provided CPR and kept him alive until help arrived. It was a miracle he survived long enough to be life-flighted to a hospital in Calgary.

Soon the word "impossible" began to be tossed at us, first at the Calgary hospital as the doctor made his case for euthanasia, then later at the rehabilitation hospital in the States. As God helped Kevin conquered each impossible, new ones sprang up before us. He almost died two more times in the early weeks post-injury. As each stone rolled away from the decree of death, new obstacles littered our path.

That pattern has not changed in the twenty-six years we have journeyed this road. Each day, we face the impossible. Each day, God makes a way.

As we trudge the slopes of disaster, I gather the gems from the muck and put them with my treasures. I've learned how much God loves people and seen the intensity with which He invests in life. Whether I'm writing about parenting or caregiving or the stories of the elders, I am blessed to find the colors of life burst upon the dark canvas of struggle.

Whatever your story is, I'm glad you're here.

Life is a gift. Let's treasure what we have in this moment and trust God to keep eternity safe for us, for the day when the lame walk and God dries our tear-stained faces.

That day's coming. Until then, we will conquer whatever comes, together. No matter what you're going through right now, you can be assured you are never, ever alone. You're important to God, and you're important to me.