Facing Challenge
This post is to all you badass caregivers out there, the ones who had a tough choice to make. You know who you are, wives, husbands, partners, family, and friends. Although we haven’t met, we know each other well.
LIFE CHANGING EVENTS
I know what you’re feeling. My husband and I are also dealing with a devastating event that changed our lives. While competing in a motocross race in 1990, Frank was in an accident. He suffered a broken neck that left him a quadriplegic, paralyzed from the chest down. Frank was a strong, independent, athletic thirty-one-year-old man before his spinal cord injury. It was a freak accident; he flipped over the handlebars and landed on his head. That split-second in time ended the life we had planned.
The Paramedics carefully placed Frank on a stretcher with a brace around his neck, loaded him into the ambulance, and rushed him to the emergency room. Within a couple of hours, the emergency room neurologist on call shared with me the horrible diagnosis. He said it was a “bad break,” and the prognosis didn’t look good. Time froze for a moment when I heard, “He will probably never walk again.” I know what a blur you feel in the beginning; everything is spinning out of control. It’s surreal.
CODE BLUE
Frank was in the ICU for several weeks while they worked on stabilizing him. At first, he could move his arms above his head and was able to twitch his thumbs. We had hope of a full recovery, but his condition worsened as the bleeding at the wound site, with nowhere else to go, moved up the spinal cord. His heart gradually slowed down until it stopped. I was standing next to his bed when I heard “Code Blue” over the speaker system, and they rushed me out of the room.
The doctors resuscitated him that day; he received a pacemaker. He lost the ability to breathe independently; they did a tracheostomy and put him on a ventilator. His leg swelled to twice its normal size from a blood clot; they put him on Coumadin. We thought we might lose him.
Finally, after about four weeks, Frank was stabilized enough to be released from ICU. They moved him to the rehabilitation wing, where he would spend the next five months learning to cope with his new way of life, confined to a wheelchair, unable to move, breathing with a ventilator. We prayed for a miracle.
A MIRACLE?
Despite the defeatist attitudes of the doctors and most therapists, Frank weaned himself off the ventilator over several weeks with the help of one compassionate respiratory therapist who saw his strength and wanted to help him despite the odds. God bless that young man, wherever he is. This was our miracle. Our hope was renewed, but the doctors and hospital psychologists felt otherwise. They felt compelled to warn Frank that most relationships end after such a tragic accident. We weren’t married yet, and they were sure I would soon be gone. They wanted him to prepare for that.
Instead of leaving, I learned everything I needed to know – with help from the nurses – about Frank’s care; suctioning through the tracheostomy, quad cough technique, chest percussions, intermittent catheterization, bowel program, bed bath methods, skin evaluation, and pressure relief techniques, methods for dressing, passive range of motion, using a Hoyer lift for transfers to and from his wheelchair, etc., etc., etc. Frank and I both had hope that he would recover, and I would be there by his side to celebrate when that happened.
RESUMING LIFE, NOT AS WE KNOW IT
Six months after his accident, Frank was released from the hospital, and we resumed our unnormal lives. Frank had worked for Fed-Ex for several years, so he had good medical insurance. We were fortunate (at first) to have in-home nurses and all the supplies we needed. I had a full-time job and continued working. The home health nurses were with Frank during the day, and I cared for him at night. We both thought this would work, but after about six months, I completely burned out.
I was getting up early every morning, working all day before picking my daughter up from school, grocery shopping, preparing meals, cleaning the house, getting my daughter ready for bed, then getting Frank ready for bed, getting myself to bed, waking up to an alarm at 3:00 am every night, to suction Frank and turn him for pressure relief. The next day I would start over. I couldn’t do it anymore. We had to make a choice. If Frank and I were to stay together, I would have to quit my job.
We knew it would be difficult to live on Frank’s social security and disability, but we took a leap of faith. I quit working outside the home, and we got married. Frank was still considered an employee on long-term disability by Fed Ex, so by getting married, my daughter and I became Frank’s dependents. We were eligible for medical insurance through his employer. Because my daughter was under 16, social security disability also considered her a dependent and his benefit amount increased. It certainly didn’t make up for the loss of my income, but it was enough to get by. We have a joke that I married Frank for his income and insurance benefits. Yeah, right.
LOVE
I don’t know for sure what gives one person the ability to take on a great challenge whereas another may not, but I do know, without a doubt, that love plays the greatest role. Love is the most powerful force in the Universe. With love, anything is possible.
“True love is sacrifice. It is in giving, not in getting; in losing, not in gaining; in realizing, not in possessing, that we love!”
― Dada J.P. Vaswani
LESSONS
We’ve learned a lot of lessons over the years. I hope there’s at least one here that can help you.
1. Closing the tracheostomy stoma (hole) was the best decision we ever made, despite the advice from several experts. Frank has had far fewer infections and much less lung congestion.
2. The best pressure-relieving mattress is a Tempur-Pedic. The 3:00 AM pressure relief turn is no longer needed; the Tempur-Pedic is worth every penny.
3. Air wheelchair cushions (Roho) offer the best pressure relief, but if they are faulty and leak, it is a disaster. Frank was in bed an entire year with a pressure sore after sitting all day on an air cushion that leaked. Be vigilant in checking the cushion daily.
4. Medicare won’t pay for wound care products until you have a stage III pressure sore, and by then, you are in BIG trouble! Don’t wait on Medicare.
5. In-home nurses can be extremely helpful with pressure sores if they know what they’re doing.
6. External condom catheters (obviously, a woman can’t use these) are great, but intermittent catheterization will help prevent kidney damage.
7. Drinking lots of water helps prevent UTIs. Shoot for your weight divided by 2. That’s how many ounces of water you should drink in one day. I know, that sounds like a lot. Do it.
8. Any UTI can turn into sepsis quickly. Don’t hesitate to call the doctor if things aren’t improving.
9. Don’t be embarrassed to call an ambulance if you need to get to the hospital quickly, even if you’re lying in bed buck naked and can’t get dressed. They don’t care.
10. Medicare will pay for the ride to the hospital, but they won’t pay for the ride home, even if your wheelchair was left next to your bed when the ambulance picked you up.
11. It’s a good idea to have a backup wheelchair. Don’t expect the repair shop to care that you depend on that chair as your sole source of independence.
12. Medical suppliers would much rather sell you a new wheelchair than repair the old one. They will refuse to repair your chair because “it’s too old” and force you to buy new. Yep.
13. If you find a wheelchair repair man that knows what he’s doing and gives a shit, keep his number, and send him a Christmas card every year with a personal message of thanks.
14. Most friends would like to help, but they don’t know what you need. Be brave and tell them.
15. Don’t worry that your kids don’t have a “normal” childhood. Love creates wonderful memories, despite circumstances. My adult daughter says she had a “great childhood.”
16. Every obstacle you overcome brings you closer together with greater respect and love for one another.
17. Don’t forget to do things that give you pleasure. Even if it’s difficult and seems like a hassle, the memories will be worth the struggle.
18. Listen to the doctors carefully, ask questions, evaluate and research everything, and when in doubt, trust your instincts.
19. NEVER lose your sense of humor. This is important. Sometimes you just need to laugh.
20. Trust God.
Micki Jean LaVres is an author, certified Reiki master, and a badass superhero caregiver. In her memoir, Soul Connection, she shares a story of true love, tragedy, and perseverance, paying forward life lessons and a message of hope.
Visit Micki’s website for more information on her upcoming book and follow her blog, Badass Superhero Caregiver.
Website: www.MickiJeanLaVres.com
Blog: www.MickiJeanLaVres.com/blog