The Rewards of Family Care-giving

The following article was written by a former caregiver and online friend of mine.  It was written about a year before her husband's death.  Her husband was initially diagnosed with Parkinson's Disease, but later that diagnosis was changed to Multiple Systems Atrophy, the same neurological disease my husband, Wayne, experienced.  I think you will find her story inspiring.  May you be blessed and encouraged by her words, dear caregiver:

What Makes Care Giving Rewarding?

“Now faith is being sure of what we hope for and certain of what we do not see.”

Hebrews 11:1 (NIV)

Since the onset of my husband’s medical condition, God has led us on a spiritual journey into unchartered territory. We did not know where we were going, how we would get there, and whom we would meet along the way. By radical faith, we continue to walk on this path one sunrise at a time knowing that, at each sunset, our destiny is in His hands, in His care, and in His time. As we embrace our daily offerings, we have been transformed into new people and view life and the world through a different lens than before. During the last three years as a full time care partner, while serving my dear husband, I have been, in turn, blessed to learn the value of acceptance, adjustment, appreciation, and action.

My husband and I were very fortunate to meet each other later in life; we have even been told that our love is like a “fairy tale”! As many couples do, we traveled to Mexico, attended sporting events, dined at fine restaurants, and had date nights at the movies. Our families, including five adult children, were united at our wedding on January 1, 2000, opening the new millennium and a bright future ahead.

After only two years of marriage, on April 2002, our world changed suddenly and unexpectedly! My husband, in his early fifties, was diagnosed with Parkinson’s Disease, a progressive movement disorder. He initially experienced a loss of balance, a softening of his voice-quality, and a change in his gait and facial expressions. With medication and close monitoring by his neurologist, we were able, with modifications, to continue our daily lives, our careers, and our new life together.

As the years passed, my husband gradually required extra assistance with walking, grooming, eating, and general communication skills. It became increasingly difficult for my husband to participate in social/family functions, to drive, and to continue employment as a dealership manager. One summer day while we were sitting on our patio, he said, “The man you knew…he is gone.” Could it be that my husband was accepting his limitations before I was ready to face them?

By 2009, my husband’s diagnosis was refined to Multiple Systems Atrophy, MSA, a rare, debilitating neurological disorder. That heart-breaking day, that moment in time in the doctor’s office, I remember holding my head in my hands and crying with my husband, praying for comfort, and asking God, once again, for strength to carry on. Because my husband eventually lost his mobility and needed help with the activities of daily living, I retired from my teaching career to offer support, assistance, and my spousal devotion. Unbeknownst to me, I immediately began a new chapter in my life as a “nurse”, an untrained one.

“The Spirit of the Lord will come upon you in power…and you will be a changed into a different person.” 1 Samuel 10:6 (NIV)

When God called upon me to carry out the task of being an informal care provider, I soon realized that I might not have the independence, the comfort, and the control that I had experienced in life before. For instance, I went from public service as a teacher, a familiar career, to nursing-care and private service in our home, a foreign vocation. With grooming duties in the morning and a regular routine in the evening, our leisure time during the waking hours decreased.

For the past three years to the present time, I discovered that the following survival techniques are crucial for me to approach each day: simplify life, maintain focus on my Divine assignment, filter out the busyness that surrounds us, laugh, multitask, be innovative, and protect my physical and emotional energy. Some days are intense, overwhelming, and dark, but you see, I treasure our precious God-given moments together and wouldn’t want to miss this dance, our dance!

“If you believe, you will receive whatever you ask for in prayer.”

Matthew 21:22 (NIV)

I call them our angels! Sometimes I even ask them, “Where did you come from?” According to God’s perfect timing and His Providence, our community-based reinforcements seem to show up at our door at just the right moment. Some resources that have helped support us and lessen our daily loads are: food delivery, Home Health agencies, transportation services, spiritual counselors, and personal care services. I now realize the importance of working interdependently with the designated professionals and volunteers; we were not meant to struggle in isolation. Our band of angels surely guards, shelters, and protects us!

“…let your light shine before men, that they may see your good deeds and praise your Father in heaven.” Matthew 5:16 (NIV)

We are following God’s dream for us. Our walk with Him gives us nourishment, discernment, and refinement. May our story and our lessons learned serve as a beacon of hope and as a shining star in the dark. We praise our Godhead for grace, mercy, and miracles. Because of Christ’s ultimate suffering and sacrifice, I must continue on as a care provider in humility and obedience.    

One day my husband cried, “I don’t want to leave you!” I assured him that we would always be together. Why, our love is a fairy tale, it is eternal, he is my prince and I am his princess. As all good fairy tales end, we will one day live happily ever after in the Great Kingdom!