Saturday, November 19, 2016
"I don't know how you do it."
We hear that every so often from others when they learn about our story. People often wonder how our family has been able to survive and even conquer the challenges of caregiving for so many years. My response is always to give God the glory for His keeping power over one of the most difficult seasons of our lives. We couldn't do it without Him.
But I know that any work of any value that accomplished in this life is done in partnership with the Sovereign. He has the plan, but we are His hands and feet and voice. It's His power displayed through our effort.
Caring for others is hard work.
It's easy to get in a rut. It's really easy to feel sorry for ourselves when we're tired and feeling overwhelmed. Complaining takes a lot of emotional effort and drains us of our joy.
That's why cultivating a thankful heart is key to successful caregiving. It takes work, for sure, but it's key to breaking old thought patterns that feed a sour disposition.
I'm always amazed at the joy with which our spinal-cord-injured son faces life. Sure, he has bad days, too, but he generally faces most days with a truly grateful heart. He's suffered so much that he's just glad to be alive and well. He lives without bitterness. He accomplishes what he can each day. He looks forward to the future.
I, who can move and breathe without disability, often shuffle through the days with a grumpy attitude. That makes both me and those around me miserable. So, for this Thanksgiving, I'm sharing a few things for which I should be grateful every day of the year.
For this, and much more, I'm grateful:
*The gift of Life
After watching my son learn to breathe again, I'll never take even the next breath for granted.
I'm so thankful that, even in my sixties, I'm still healthy and able to care for my family.
We have just emerged from a brutal election cycle. But I'm still amazed how this country can come together and move on in a generally civilized manner. I thank God that the citizens who peacefully disagree with those in power aren't hauled away to jail or beheaded on a beach. And I'm deeply grateful that those who are disabled and aged aren't forced to give up their lives for the supposed greater good of society. I pray that never happens in this country.
*The faithfulness of God
He is good to me, even when I'm not good to Him or others. His grace blankets our family with peace.
*The loyalty of my family
We were always a close family, but it took a disaster for me to see how devoted they really are to each other, and how they make sure that their relationships stay solid, even in the worst of times.
Especially in the worst of times.
We were told that if would be impossible to care for our son at home. He was told it would be impossible to go home. Every day, for two decades, we have lived the impossible!
If there's anything I've learned in the last year, it is to NEVER quit praying, unless I know God's answer is no. I've had prayers answered in the last year that I had prayed for years, seemingly without an answer.
Trust in God's timing. He does hear.
We never have too much. But we always have enough. The bills are paid, and there is food on the table. There's even enough to share with others and have some fun. I'm very grateful to the federal and state agencies that work hard to help us care for our son. Sometimes, when I'm feeling irritable at some regulation or bureaucratic snafu, I try to remember just how much they have done for us. They are human, too, and are trying to help, even when the red tape seems counterproductive.
I could go on and on...
There is such an embarrassment of richness bestowed on our family that I could spend the bulk of most days in an attitude of thanksgiving. Instead of waiting for the annual Turkey Day, my heart should be on its knees saying grace every single day. Because for us, life is good.
Thursday, October 13, 2016
When our son Kevin was injured in a fall nearly two decades ago in another country, all I cared about was keeping him alive and getting him home. Once his condition stabilized, he was flown to a hospital in the States. We nearly lost him twice in the ensuing days. Eventually he again stabilized enough to be transferred to a rehabilitation hospital. The staff there told us what to expect when he came home and prepared us to deal with his extensive medical needs.
Learning to cope with the emotional and spiritual cost was more difficult. We struggled through long seasons of despair and loss as we cared for Kevin year after year. We slowly learned to surrender our dreams in exchange for God's plans. We eventually moved from denial to grief to acceptance.
Finding joy was a surprise.
Everyone told us caring for him would be impossible. No one told us that caring for him would bring us joy. In the years since his injury, we have learned much about courage in the process. Kevin has fought for his faith as valiantly as he fought for his life. He built a 3-D graphics studio with his brother and founded a popular Christian music website. He lives each day with trust and without complaint.
Certainly these years have been hard. But when I see Kevin laughing as he races us in his wheelchair on a seaside boardwalk, taking his dog for a stroll, working with press agents and music companies and recording artists, or rolling down the aisle to be his brother's best man, I am reminded of all the beauty no one told me to expect.
Today, if you're a mom or dad or grandparent or spouse to someone who needs a caregiver, I want you to know this:
Caring for others is the most important job you will ever have.
The life of another human being is in your hands. Your work is important, unseen, and sacrificial. Your dreams for tomorrow have been set aside for the realities of today. You endure incredible daily stresses, often alone. Sometimes it feels like no one cares for you, and it would be easy to let the night fall on your faith.
But you can leave the shadowlands behind, because Someone does care for you.
There is no place so dark that God can't find us.
I know, because I've been there. But He wouldn't let me stay in the shadows. Thank God for giving me renewed hope and light for the journey! May He grant you light and joy for yours.
Wednesday, June 1, 2016
You could call it ironic.
Decades ago, a doctor by the name of Henry Heimlich read an article about people dying from choking on food in restaurants. Dr. Heimlich eventually developed a procedure to help dislodge food from a choking person's windpipe by applying abdominal thrusts, first described in 1974.
Variations of the procedure have been incorporated into first aid training for years, although its effectiveness is now in debate. But that didn't stop the doctor from springing into action in May of this year, when a woman seated next to him began choking on a piece of meat during a meal.
The Associated Press reported that Heimlich was having dinner when he noticed that the woman seated next to him began to get pink in the face and appeared to be choking. He got up behind her and began the Heimlich maneuver. A piece of hamburger with a bone in it popped out.
The woman, Patty Ris, was reported to be feeling fine afterward and credited Dr. Heimlich with saving her life. She was convinced that God had seated them side-by-side that day.
The irony of saving a person with his own procedure in a community setting should be especially sweet for this doctor, because Dr. Heimlich is now ninety-six years old, and the incident occurred at a senior living center in Cincinnati, Ohio, where he is a resident.
Who would have guessed that an elderly man in a senior center would be a lifesaver? How many times had workers and visitors walked by him and seen only an old man?
It's a good example of why society should not be allowed to be the judge of the boundaries on a person's usefulness. Indeed, usefulness to society should not be the criterion for care in the first place.
A life should be valued for its existence alone.
But that is often not the case in our culture. So bravo to Dr. Heimlich for reminding us that we have something to offer to others, regardless of our age and our physical or mental abilities. Thanks for reminding caregivers and health care providers that we serve humanity when we care for others. A lifetime of rich experiences and relationships and expertise may reside in the most humble of humans.
Thanks, Dr. Heimlich, for encouraging others to see every person as vital, regardless of age or ability.
Monday, March 7, 2016
Not long ago, Carole Bradley Bursack of Aging.com posted “10 Caregiver Confessions: Secrets We Aren’t Proud Of,” in which she listed ten “non-angelic” thoughts she had heard caregivers express over the years. They are the dark confessions of people under stress.
Loving, devoted, committed people get burned out caring for their loved ones.
It doesn’t make them evil. It makes them human.
Is it possible to survive and even thrive as a caregiver? I believe the answer is, “Yes.”
After we received the call about Kevin’s accident, we drove through the night from Idaho to meet him in Calgary. Shortly after we arrived, we had to fight back a push for euthanasia. He was on life support and needed surgery to stabilize his spine and provide an access point for the tube into his airway. Until the surgery, he had to have the tubes in his mouth. After surgery, the tube to the ventilator was attached to a tube in a hole in his neck, called a tracheostomy.
He was flown back to the United States for rehabilitation and nearly died twice before making it to rehab. In rehab, Kevin learned how to live in his new body. We learned how to care for him. We went through an intensive program, because we had to convince the hospital we could care for him at home. This hospital had never released a person with this high of a spinal cord injury home.
They told us in the beginning it would be “impossible” to care for him due to his fragile condition and high medical needs.
For us, there was no doubt. We would be taking him home.
During rehab, he surprised the doctors by gaining back some function and feeling. Eventually, he was able to return home to live. Although he gained back more than was first expected, he still was mostly disabled.
He came home on life support and required 24-hour care. At first, the state of Idaho provided nursing care for him under the Katie Beckett program. After two years, when he turned 21, the program ended for him, and we became his full-time caregivers.
I quickly realized why we were told at the rehab hospital that it would be “impossible” to care for him at home. Everything fell into pieces around us as we spent all day and all night, every day, keeping Kevin alive. Emotionally and physically, we were soon exhausted.
I knew that if our lives centered around Kevin and his care alone, we weren’t going to make it. We were committed to keeping him at home, but we had to do something differently.
So I began to employ the principle of triage. Now, I wasn’t a nurse at the time. This was something I did instinctively at first.
According to Taber’s Cyclopedic Medical Dictionary, the term triage comes from the French and denotes “sifting” or “sorting.” Keep those words in mind. They are important words to remember. It is thought to have been developed during the Napoleonic Wars and further developed during World War I by French doctors.
The medical definition of triage is enlightening:
1: The screening and classification of casualties to make optimal use of treatment resources and to maximize the survival and welfare of patients.
Although triage originated in the military as a way to allocate scarce resources on the battlefield, today it has been expanded for use in disasters and emergency rooms.
Triage has evolved into sophisticated models but still strives to address the dilemma of how to allocate scarce resources in urgent circumstances in a way that is both fair and compassionate. These models are based upon the so-called “primitive” model, in which patients were usually divided into one of three categories:
Category 1. Those who will not survive, even with treatment.
Category 2. Those who will survive without treatment
Category 3. Those whose survival depends upon treatment
Out of those three categories, who is going to get treatment first when catastrophe strikes and resources are scarce?
Imagine being one of the first responders on an earthquake scene and the ambulances haven’t arrived yet.
You find three people in the rubble. One person is obviously dying. You do what you can to make him comfortable and move on to the next person. This second person has a superficial scrape. Again, you make him comfortable and move on. The third person requires your immediate care to live.
This is the one you treat first, because he is the one whose survival depends upon you.
I love this comparison. When you have gone through a catastrophic illness or injury with a loved one, you feel like you have been on a battlefield. Life literally becomes a daily fight for survival.
But I think we’re made for more; not just to survive life’s challenges, but to conquer them.
Life is a battlefield. Your loved one is the wounded. You are the scarce resource.
Now let’s take this and direct to the sorting and sifting of life’s issues in order to learn how to care for your loved one, your other relationships and duties, and yourself without falling apart.
Remember Tabor’s definition of triage as a way to maximize survival and welfare?
This is our goal in “sorting” out our lives according to a system of priorities. Remember, we are not deciding who lives and who dies. We are applying this system to prioritize our lives.
When we first brought Kevin home from the hospital, our goal was survival. But as the years have gone by, we have come to a place where I can honestly say we’re happy. We’ve moved beyond mere survival to a place of well-being.
Sometimes people ask us how we’ve made it so long caring for Kevin. My first response is that we have been granted the strength by the grace of God. Remember that they told us it would be “impossible” to care for Kevin at home. Through God’s grace and prioritizing our lives, we have been able to accomplish “the impossible” every day for nearly two decades.
But I also know it has been the result of a daily process of learning to sort out our lives.
So how do we employ triage as caregivers?
Let’s take those three categories and use them to “sort” or “sift” out our lives:
1. Those situations that cannot be salvaged, no matter how much time and energy we invest in them.
2. Those situations that will resolve themselves without our help.
3. Those situations for which we are uniquely qualified and which will only improve with our attention and resources.
We are only human. We can’t waste our energy, time, and tears on those things which are beyond our control (category 1) or which will resolve by themselves (category 2). The trick is to know which is which!
Here’s my formula:
1. I made sure Kevin isn’t the center of my world, even though his care needs are extensive. Kevin felt very guilty about what he had done to our lives. That was too much pressure for any one person to bear. For our family, we established our faith as our center. That means we are all serving something beyond ourselves. It gives us a reason to work together toward a common goal. It eased Kevin’s guilt and gave us a sense of destiny and purpose. Our situation became a vehicle for moving forward in hope instead of idling at a dead end filled with regrets.
2. Next I “sorted” through our lives and decided how I was going to spend my energy and time. I knew that Kevin would die if he were sent to an institution, because his medical needs demand one-on-one monitoring day and night. I thought about what that would cost me and made the conscious decision to put my energy into helping him live. My next priorities were my husband, children, and grandchildren –my most important relationships.
3. I have tried over the years to keep a solid boundary around those priorities. As Kevin has improved (He’s off the vent on days now and can move and even walk with help), I have been able to add new activities, such as writing and speaking. But these aren’t in the same category for me. I know I can cut them out should our situation change.
4. I understand that my health is also in the third category. Because of this, respite is crucial for us. I know it isn’t that simple. We always hear people telling caregivers to “take care of yourselves.” That’s easier said than done. Getting respite for most us is difficult.
Sometimes respite is more of a change in attitude than a change of scene. When the weather’s nice, my husband and I will sit out on the deck with cheese and crackers and pretend we are at a street café in France. We’ll have coffee in the breakfast nook and ignore the fact that it’s noon and Aaron just awakened from a night of watching Kevin. Because we love the ocean, we painted our bedroom in colors that remind us of the Caribbean and put an aquarium in there. It was a struggle at first to learn how to enjoy life again without feeling guilty. But that came, too.
5. After I determined what priorities are non-negotiable, I experienced a sense of freedom in knowing that it wasn’t up to me to take care of everything that came my way. I began to sift through the other events in my life and choose those things upon which to spend my energy. I learned to allow other people to make us dinner in our house (I used to have a hard time turning my kitchen over to others). I tried not to worry if the toilets had mold in them and someone stopped by unannounced for a visit. I also learned to speak up and ask others not to come over if they were sick. Drawing boundaries helps us stay sane.
6. I gave myself permission to say no to things that I don’t have the energy for. I have discovered that they will survive without me.
7. I try to save my heart for the truly important things in life and not waste emotional energy and tears on things I can’t change.
Caregivers are nurturers.
It’s in our nature to fix everything. We keep going until we crash.
But by sifting through the many demands on our time and resources, we can sort out what’s really important and live beyond simple survival.
In medical triage, patients are periodically reassessed for possible reclassification.
It’s crucial that we do this, too. By periodically reassessing our roles as caregivers, we can forestall potential problems, keep our loved ones safe, and stay centered.
We can maximize our survival and our welfare and the welfare of those we love.