Hope. It was the one thing I searched for during my journey as a caregiver. My husband, Steve, had a rare, progressive, debilitating neurological disease that would eventually destroy his autonomic system and also required 24-hour care. Every time I came to that point where I thought I couldn’t go on, I still had hope. Each day that I had no energy left, no patience, no desire, and no strength to go on even one more hour I searched for the hope that I could go on. Yes, I said all of those words out loud - no patience, no strength, no energy.
As a caregiver, I had only whispered those words to myself. I would mumble under my breath sometimes about how hard it was to keep doing it. I was too ashamed to admit to anyone how I was really feeling. No one tells you that loving someone can coexist in your heart with not wanting to be their full-time caregiver at the same time.
Maybe there are some rare individuals out there who absolutely have the strength to sustain years of being a caregiver without a break. Maybe I was weak. I don’t think so. During this journey, I learned that I had more strength than I ever in a million years thought I would have. Six years of progressively intensifying caregiving, working full time, commuting two hours to work each day, and being both mom and dad to our two teenagers was not easy in any sense of the word. Whether I could admit it or not, I had strength.
I have to be honest in that I never really considered myself the type that would fit in the esteemed category of caregiver. I was impatient. I was not a natural nurse. I was busy. I don’t want to give the impression that I was not empathetic or caring. I was. I just didn’t want to take caregiving on as a full-time job.
I remember once several years back when Steve broke his finger in a farming accident. It was only one finger, but after surgery the doctor placed a giant cheese block looking piece of foam on his entire hand to protect the finger. It got in the way so much that he needed a little bit of help taking a shower for a week. I was disgruntled and cranky about the whole process. You would have thought I was being forced to march 100 miles in the snow wearing flip flops while toting a family of polar bears on a sled. I did not want to be inconvenienced to help him with his shower. Clearly, I did not realize how good I had it then with such a minuscule amount of caregiving.
In 2015, our family was served by Inheritance of Hope at the Orlando Legacy Retreat. As a caregiver, wife, and mother, IoH was instrumental in ensuring we enjoyed what would become our last vacation together as a family.
Kim and Steve Bohannon with their children,
Back to hope. During my six years as a caregiver, it seemed to be dangling out in front of me, always a step out of reach. However, I never gave up. I can only tell you that God had a plan at work, and He was gracious enough to let me join in. For a Christian, it is somewhat easier to understand that hope exists because you derive your entire being and your center of life from His strength. Without God, you can survive, but hope will be elusive. During my journey as a caregiver, God continued to reveal Jeremiah 29:11 to me.
For I know the plans I have for you, declares the Lord, plans for welfare and not for evil,
to give you a future and hope.
Reading this verse, I knew that God was telling me I had hope. If you are a caregiver reading this please know you can and will survive. At this very moment it may not feel like it, but you will survive. In fact, with the right perspective you can not only survive but also learn to embrace your current situation as a blessing in disguise. The knowledge you gain and struggles you face will strengthen you. They will enable you to empathize with others during their struggles. It is during these times when we barely think we will survive, that hope is one of God’s most beautiful gifts.
A note from the author, Kim Bohannon:
In 2016 I lost my husband to Multiple System Atrophy. Now as a volunteer with IoH, I want to pay forward the love given to our family to other families. Throughout my journey and struggles as a caregiver, writing has been my escape. Committing feelings to words has helped me share with others the reality of life with a disabled spouse, the challenge of working a full-time job, 24-hour caregiving, raising teenagers, and hopefully giving at least one caregiver permission to feel normal. The love and kindness we received from our IoH family during that initial retreat continues to this day.