While reading online the other day, I came across a popular saying that I hadn’t seen in a while: “It takes a village.” Although familiar with its general meaning, which refers to the communal raising of children, in a broader context, can’t the concept of a “village” also apply to caregiving for a loved one with a terminal illness? Doesn’t it take many individuals—caregivers, medical and social services professionals, friends, and family members, all working together—to provide the best possible care for an ALS patient?
As a caregiver for a loved one with ALS, you constantly interact with a myriad of individuals at various times during the course of the disease. A single caregiver, no matter how dedicated, cannot provide all the requisite care. While acknowledging that you cannot go it alone, it can also be difficult accepting that you need help. After all, who can you trust to perform the vital functions that impact the health and well-being of your loved one? And who wants a parade of strangers coming into one’s home constantly, creating even more stress?
Reflecting on my own experience, I was fortunate that my husband Brian was highly functional for the first 3 years of his disease. During that time, I increasingly helped him with activities of daily living as his ALS progressed, but solo caregiving was manageable. However, I was totally unprepared for what lay ahead when Brian’s breathing and mobility status suddenly changed in October 2008.
As I related in an earlier post, Brian collapsed at home in October 2008 and was rushed to the hospital, spending almost 2 weeks in the ICU. During that time, I had a crash course in use of the BiPAP, along with other caregiving functions. Simultaneously, I was arranging for agency help (4 hours of morning caregiving each day) to start when Brian was discharged. It was a time of tremendous change and transition for Brian, our daughter Leah, and me.
I vividly recall feeling overwhelmed by all the changes that were swirling around me. I felt that my home was turned into a mini-hospital. There was the constant stream of people invading our space: PT, OT, nurses, vendors, a physician who made house calls, and a variety of caregivers, some of whom were not competent or caring. Luckily after some initial missteps, our home care agency sent Michelle and Christina. They were compassionate, patient, and knowledgeable. Michelle took care of another ALS patient in the afternoons, so she was well versed with the unique needs and challenges of the disease. Both caregivers contributed to the quality of Brian’s life and were supportive of both Brian and me. We became a team. Eventually, Christina found another job, but our agency sent another wonderful caregiver, Lilly.
Our village was small. We did not have any family in St. Louis. My brother, who was close with Brian, drove down from Chicago every 3 weeks or so, and Brian’s sister Joyce came every 6 weeks. Our daughter Leah moved home after college graduation to help care for her dad. Many of Brian’s colleagues visited regularly while he could still speak and go without the BiPAP for short periods, and friends and other out-of-town family members came when Brian was feeling well enough. At the end, Michelle and Lilly were there for us, even on the morning of Brian’s passing. They stayed and cared for him until the funeral home arrived.
Michelle, Christina, and Lilly saved my life. They made the unbearable more bearable, the impossible a little easier. They were my village—my rock, my foundation, my family. They treated Brian with dignity and respect, and I am profoundly grateful to them.
Who is or was in your village? What were the biggest challenges you faced as your loved one needed more caregiving assistance? Please share your experiences and thoughts on any aspect of caregiving, current or previous, in the comments section. Let’s continue the conversation.
Idelle Winer was primary caregiver to her husband Brian, who passed away in 2010 after a 5-year battle with ALS. A retired medical publishing professional, Idelle offers her unique perspective on a variety of caregiving topics in our feature Caregiver Confidential.