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.
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.
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.
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?
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.
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.
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.