Tag: caregiver

What One “Useless Life” Taught Me

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Just an 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, 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 they said 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 I 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.

What They Didn’t Tell Us

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Until our nineteen-year-old son broke his neck in a fall in the summer of 1997, we knew little about spinal cord injuries. His break was very high, and the chance of his survival was bleak. Since he was injured during a trip to Canada and we live in the United States, it was a difficult journey to join him at the hospital. When we were able to get to his bedside, we found him totally paralyzed from the neck down and attached to life support.

Grim-faced doctors told us the many challenges Kevin faced:

  • He would never breathe or move again below his neck or possibly his shoulders.
  • He would need round-the-clock care.
  • He would certainly suffer from a host of complications such as pneumonia, blood clots, and urinary tract infections.
  • He could never live at home again. He couldn’t even return to the United States because no airline would accept him in his condition, no doctor would sign to receive him, no medical team would accompany him on the flight, and the cost to fly him home would be prohibitive.
  • He could not stay in Canada.

For our son, and for us, the situation seemed hopeless. One doctor was angry when we resisted a push for euthanasia.

What most of the doctors didn’t tell us was that their predictions weren’t written in stone. Yes, Kevin did suffer from pneumonia in the beginning weeks. Urinary tract infections have been a continuing challenge for Kevin. And yes, he needs round-the-clock care.

But none of the rest of it happened.

People, churches, and organizations in Canada soon learned of his injuries and rallied to his cause. Within a week, Kevin was flown back to the United States in a chartered Lear jet, accompanied by a volunteer medical team – the entire cost paid by donations.

He was received into a hospital close to home and later released to a rehabilitation hospital.

As his body came out of spinal shock, he began to regain function and feeling, stunning the doctors and therapists. This healing would continue for several years.

What no one told us was that one day Kevin would breathe again on his own, walk with help, and return home to rebuild his life. Although he remains mostly disabled, he has movement and feeling in most of his body. He only uses the ventilator at night to sleep.

In the years since his injury, he has built a computer 3-D graphics studio with his brother and founded a popular Christian music website. He lives each day with faith and trust and without complaint.

No one told us that caring for him would bring us such joy. No one explained how much his life would enrich us, or how much we would learn about courage in the process. Certainly these years have been hard. But when I see Kevin laughing and chasing his nieces around in his wheelchair, or taking his dog for a walk, or working with press agents and music companies and complicated animation software, I am reminded of all the beauty they never told me to expect.

They never told us to have hope.

Fall Celebration

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 I’m honored to be invited to speak at the Salmon Valley Baptist church on October 11, at 6:00 p.m. The occasion is a women’s ministry meeting and fall celebration. I also get to catch up with the lady responsible for leading me to the Lord nearly four decades ago. Connie Seibert and her husband, Pastor Ron Seibert were instrumental in discipling my family in the early years of our walk with Christ. Connie is now a fellow author.

It will be a pleasure to see them again. We have lots to share!

If you live in the Salmon Valley area, I’d love to meet you. Otherwise, your prayers are much appreciated for this evening as I share my heart with these lovely ladies.

You are Invited

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If you’re reading this today, you’re alive.

Maybe you don’t feel that way.  Instead, you’re barely holding on. You feel numb, unworthy of God’s love.

It’s especially easy to feel that way if you’re one of the thousands of people suffering from chronic disease or devastating injury. Perhaps you’re one of the millions of people who care for them. Either way, you’ve forgotten what it’s like to have what most would call a “normal” life.

Boy, have I been there.

Our son’s spinal cord injury in 1997 plunged him into the world of disability and dumped me into the world of caregiving. I quickly learned that the fight for life is as primal as it gets.

It’s a lonely trip. It’s an honor. It’s a tightrope walk between the two stretched over a chasm of uncertainty.

Today I’ve served more than two decades as a caregiver. Every step of the journey, God has held us, even when I didn’t know He was there. His comfort has been the golden oil sustaining me through every trial. He has taught me to relish each day I can breathe and think and worship my Creator.

Rejoicing in the Lord always.

Trusting in a faithful Father for tomorrow.

Life is a gift, an invitation to a very special party. Let’s treasure what we have this moment and believe God will 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.

You’re alive. You’re safe. You’re precious in His sight. 

That’s worth singing about. Come on, join the celebration!

5 Ways to Ease Caregiver Strain

 

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My latest issue of Nursing 2013 came in the mail yesterday. Usually I set magazines aside for later reading, but the title article on this one caught my eye immediately:

Easing the burden on family caregivers

I’ve been a full-time caregiver of a high-level quadriplegic son for sixteen years. I love my job, but I’m always willing to learn anything to ease the workload. I grabbed it 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 I’ve pulled out a few of their ideas and added a few things we’ve learned over the years to share with those who care for loved ones.

5 Ways to Ease Caregiver Strain:

1. Learn to depend on others for help.

Caregiving is a marathon. No one can take on such duties day after day after day without respite or assistance. It’s hard to ask others 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. Adapt an assertive, rather than a passive, coping style. 

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.

3. 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. Know what community, church, and government resources are available.

4. Be kind to yourself.

Caregivers often put the needs of their loved ones ahead of their own needs. In order to take good care of others, 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 “worst first” in your day. If a chore 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.

5. 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.

 

In the War for Independence, Who Will Be Their Voice?

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Learn to do good;
Seek justice,
Reprove the ruthless;
Defend the orphan,
Plead for the widow.

Isaiah 1:17 NASB

A heat wave has gripped the nation as the United States celebrates Independence Day. In the midst of withering triple-digest temperatures, a cold wind blows. The chill is coming from the icy fingers of death…the death, that is, of compassion.  

On July 4th of every year we cheer the American Revolution, committed to the radical notion that every human is equal in the eyes of his Creator and deserving of the most basic of freedoms: 

Life.

Liberty.

The pursuit of happiness.

How ironic that the end stage of such a war would, over two hundred years later, those three essential rights would come with asterisks, that the basic foundation stones for our society would be moved at will by those to whom we have charged the defense of our nation.

Today life is only granted for those who are deemed wanted or useful to society. Disabled, defective, or incomplete humans have no place in Darwin’s brave new world of the survival of the fittest. As medical resources have become more scarce, we are already in the process of moving quietly toward allocating care to those most likely to benefit from it in restored contribution to society. 

The tenets of liberty and the pursuit of happiness have also been perverted to legalize perversion and squash religious freedom. The long slide down this slope began decades ago, when we began throwing innocence in the trash along with unborn babies, nativity scenes, and school prayer. 

I’ve been there. I’ve seen it. Over twenty years ago, I was fighting to keep the doctor from making my disabled mother die because, in his words, “Her life is worthless.” This was not a woman in a coma, but simply crippled and silenced by strokes. 

When she first knew something was going wrong in her body, she told me, “Pam, give me every chance to live.” When the time came to give her that chance, the doctor didn’t even ask what she would want. She was worthless, no longer counted.

Sixteen years ago, I was fighting to keep the doctor from pulling the plug on our son after his spinal cord injury. Kevin also wasn’t in the mood to die, but that doctor didn’t ask his opinion, either. Evidently, he no longer counted in the economy of life.

One fight occurred in America; one in Canada; but both were part of the deliberate parade toward exterminating those who do not fit our definition of “useful.” This march transcends nations, politics, and administrations. It’s not being orchestrated by doctors, nurses, or even politicians. It’s the heavy boot step of an unseen enemy with one goal: to destroy all humanity and thus hurt and rob the Creator who made us.

He’s found plenty enough help from us. Our society is sick; in fact, our world is sick. As we fall collectively farther and farther from God, the compassion and care for others that naturally flows from His heart falls with it. Life no longer has dignity by virtue of being. The body is no longer considered the temple of a living soul, but a glob of throbbing tissue and random brain waves. Life itself is open to interpretation.

It’s all been complicated by the advance of medical technologies that have blurred the lines between living and dying. When to give up has become harder and harder to decide. I understand the pain endured by many families in making the tough medical decisions necessary for their sick and injured loved ones.

This isn’t about those issues.

This is about speaking for those without either voice or choice. It’s about remembering that we are made in the image of of the great I AM; valued because we are. It’s about those with power using that power to protect the powerless. No one should have to prove that they can be useful on order to deserve life. 

No one but God has the right to give and take life. Nor does anyone have the right to decide who is worthy of our care. The more I learn about what is being done today in the name of medicine, the more I mourn, and the more I determine this:

For those without a voice: I must speak.
For those whose limbs are silent, I will, by the grace of God, be their hands and feet.
To a hurting world, I long, with all my heart, to be the expression of His comfort.

America, America, as we celebrate this birthday, may God shed His grace on us, the undeserving. 

Awakening

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A man’s pregnant wife fell into a coma after losing a baby to a blood infection. She was unresponsive and on a ventilator. After two weeks, the hospital told the man they were going to pull the plug. The man “snaps and tells his wife off.” Two hours later, she began breathing on her own. Eventually, she regained consciousness.

I read this story on the news a couple of days ago. This story and others like it have made me think. I wish I could ask some questions of the couple and the hospital:

  • Could the woman hear her husband “telling her off” while she was in a coma?
  • Did the doctor have any explanation for her awakening?
  • Has anyone explored the possibility that the brain shuts down during trauma in some way that we don’t yet understand, giving the false impression in some cases that the person is in an irreversible coma?
  • Has the fact that some people have awakened after being declared dead made the hospital rethink its protocol for turning off the vent?
  • As healthcare costs continue to skyrocket and improved medical technology prolongs lives that would have been lost in earlier times, has the medical field lost its collective patience and begun to replace compassion with convenience?

Until we have the answers we need in these and other vital questions, choose to err on the side of life. Everyone deserves the chance for an awakening.

An Every Day Thanksgiving

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My husband and I were talking about the world situation the other day. From recent news reports, everything appears to be going to “hell in a hand basket,” as my blessed mother would have said. I’m not sure what the phrase means, but when she used it about any particular situation, we always knew that life wasn’t going to be pretty until some serious adjustments were made.

As my husband and I talked, it occurred to us that, although things around us are bad, we really only know it’s that bad because of the news. We actually wouldn’t even know about it by looking at our lives. Sure, we have a tough situation caring for a quadriplegic son, but our lives are, in many ways (can I really be saying this?) – pleasant. We have much for which to be thankful.

This morning, I was thinking about some of our blessings in these troubled times:

  • I awakened in my own bed this morning. Believe me, this is a blessing. I, as well as the rest of the family, have spent many nights wadded up in a hospital chair next to Kevin’s bed in ICU or rehab.
  • God has granted us another day together. My friend Cindy, who recently lost her battle with cancer, would have been ecstatic to have had a healthy, pain-free day to enjoy with her family.
  • I am in reasonably good health.
  • I have a wonderful family who loves me and who is trying to serve God every day.
  • We still live in a free country.
  • I love my jobs: taking care of those I love and writing about the One I love.
  • I can eat whenever I want, shower in hot water, use all the electricity I need, sleep when I feel like it, and buy the necessary things and a few extra delights like candy, pretty clothes, and home furnishings.
  • My friends are awesome.

I could go on, but you get the idea. Yes, I could make a list of the things that make my life difficult, even pitiful by some people’s standards.

But Thanksgiving is such a great place to live. It really beats the alternative. Since I’ve found myself here this morning, I think I’ll just hang around awhile and enjoy the view. God seems to show up here a lot, and I’ve been looking for Him lately, anyway.

I wonder if He was waiting for me.

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