“The disease is treatable, though progressive,” the neurologist explained. “It will debilitate you, but will not kill you.”

These last words, though reassuring, did little to soften the blow that my husband—a man who had run his own business for over 30 years, provided well for his family, and who had recently retired—was now facing a different future than expected. The doctor explained further that this quiet, reserved man would become increasingly more dependent physically, mentally, and emotionally.

The signs had been there: the slowed walking, stiffness, joint pain, difficulty doing quick mental math—something my husband had always been good at. It was easy to write these things off as “what happens to people as you get older.” Even among the medical community, the signs that seem so obvious are easily missed.

Journeying as a Family

From the beginning, our children knew we would face the journey with Parkinson’s as a family. They immediately began to plan steps of action for future caregiving. Throughout the eleven years of their father’s illness, our son and daughter and their spouses devoted much of their time, love, and energy to us—even when it was personally inconvenient for them. Our son did not live near us, but made frequent flights home—sometimes on a semi-emergency basis. Our daughter, who lived closer, was able to interact with us on a daily basis. The children’s involvement in our lives reassured my husband that his life had worth and that he was loved.

Our daughter arranged for us to begin family meetings with a counselor. Sitting together in counseling sessions with a skilled, compassionate counselor provided a safe environment in which we could express our feelings and share our fears. And the counseling sessions were a great resource for learning communication skills—skills which we have needed even after my husband’s death.

Our son set up spreadsheets on the computer from which we could share information to help me keep up with financial matters and scheduling of caregivers. He also set up and conducted monthly Skype sessions with him and our daughter, and my husband and me. These sessions helped create a precious level of trust and care for one another as we problem-solved together. The family counseling meetings began in 2010 and continued until mid-2013 upon my husband’s death. The Skype sessions still continue with the three of us, almost two years later.

A Shared Journey

The medical community provided all that they could, although there is no cure for Parkinson’s—only treatment. Because diagnosis is tricky and there are a number of atypical forms of the disease, no two people experience their illness in exactly the same way. Brain biopsies done after a patient dies enable further research to be done on Parkinson’s, so my husband decided that he wanted to donate his brain to Mayo Clinic. This brought our family comfort, knowing that even in death, my husband’s life would serve a good purpose.

A great deal of help came to us from various organizations via the internet. We learned that exercise is one of the best “medicines” and that socialization and meditation are useful. As my husband’s disease progressed, depression, dementia, and anxiety became more noticeable. At that point, we joined a Parkinson’s support group where we made friends who were courageous, upbeat, and loving. The group began meeting monthly, but because everyone found it so helpful, it developed into a weekly gathering.

As so often happens, caregivers can have health issues of their own while trying to care for another. In the spring of 2011, I was diagnosed with breast cancer, and in the winter of December 2012, parotid (salivary gland) cancer. Both of these were successfully treated with surgery and radiation therapy, though the parotid cancer has me in lifelong monitoring. Throughout this time, our church family and friends—as well as paid caregivers—all stood with us. My husband, who had always been so independent, learned to accept help from others and was encouraged by the visits of his caregivers and friends. They took him on walks, helped with his exercise routine, reminisced with him about the past, and sometimes prepared wonderful meals for both of us to enjoy.

At the Journey's End

After 46 years of sharing our lives together, there were still many things my husband and I wanted to happen that were not possible. However, I am grateful for the steps he took after his retirement and in the early stages of his illness to make sure that our home and the property he managed were in good order. He accepted his disabilities and willingly submitted the care of the property—in which he had invested so much of his life—to others.

As his dementia became undeniable, God’s strength became more apparent in my husband’s life, even as his physical and mental abilities declined. Experiencing God’s love outpoured in his life enabled him to face the challenges of Parkinson’s with greater faith. Romans 8:28 became a reality in both of our lives. We knew that God was working in our circumstances for our good, and that nothing could separate us from God’s love in Christ—not even a debilitating disease accompanied by dementia.

We had the promise that by God’s grace, we were more than conquerors through Christ (Romans 8:37)! So by God’s grace, my quiet husband learned to confide in others in ways he had not done before, and he learned to express his feelings, love, and appreciation more freely. Parkinson’s changed his life and his focus.

In the end, he began to long for the life to come—to be in God’s presence. On his last morning on earth, in his own home, he was able to tell me that he felt peaceful, happy, and thankful—just moments before slipping into the arms of the Lord. I will always be grateful for that wonderful gift. Thank you, Lord Jesus!

(Pearl Sorensen, a retired teacher and active in the local community church, spent many years assisting her husband in his Penngrove, CA agricultural business.)