By Gregg Ratliff
I feel my wife Nancy was the hero in our family. I was just the parsley on the side of her dinner plate. According to estimates from the National Alliance for Caregiving, during this past year, 65.7 million Americans (or 29 % of the U.S. adult population involving 31 percent of all U.S. households) served as family caregivers for an ill or disabled relative. I was just one of many. I’m fortunate that God gave me a deep love for Nancy and a strength that went beyond my own capabilities. The person being cared for also plays a major role in the caregiver’s capabilities. Nancy’s personal qualities like her resolve, optimism, strong faith, love of life, love for family and love for people in general made my job easier.
With a long lasting illness like “Lou Gehrig’s Disease” the relationship between the patient and caregiver can become blurred. What I mean by that is it was easy to change from the wife or husband to strictly the caregiver role. In some cases the caregiver, being only human, can burn out and become bitter, feeling like their partner is robbing them of their own life. I never felt that way at all, but I certainly do understand how that could happen. I attempted to guard against that pitfall by continuing to “date” Nancy. I brought her flowers, gifts, bought her new clothes, bed clothing or bed linens all in an attempt to keep her groomed and taken care of in the way I know she would have preferred. I read to her, talked to her, told her how beautiful she was (and meant it).
When I had more nursing support I use to be a “torch lighter” speaker for the United Way and the ALS Association. These were ways that I could demonstrate to her and others that I am an enemy of her enemy (“Lou Gehrig’s Disease”) and I will continue to be an advocate for ALS research. Besides, speaking these events also provided me a venue to brag about my hero.
Flexibility became a way of life for me. I rarely sweat the small things anymore. My primary goal was to be my wife’s protector. Probably the most difficult challenge for me was to remember to take care of myself. Intellectually, I knew that I needed to do that because if I didn’t it would greatly inhibit Nancy’s level of care and the lives of our family members whom we love. But, medical coverage became thin and resources in general became even thinner. A caregiver’s biggest enemies are guilt (never feeling we’ve done enough), loneliness, exasperation (with insensitive agencies), exhaustion (from a repetitive lifestyle), frustration, anxiety, depression and learning how to live a “new normal.”
I hope that God will provide me additional years to enjoy life, serve Him, bless others and take care of myself in the eve of my wife’s passing. But if not, that’s where my faith comes in. Taking care of Nancy’s health, maintaining her dignity, helping keep her sense of “being alive” and loving her remained at the top of my priority list.
A couple years ago I discovered a spiral notebook in our Master bedroom closet with the following remarks in a shakily written handwriting: “Merry Christmas 2009. Thank you, thank you, and thank you for everything and all you do for me. You make this difficult time easier. You secure me in trial and tribulation. I love you, Nancy”
You can only imagine how deeply I was moved. I think that’s what God meant when He said “two shall be as one.”
Today’s blog post is part of a recurring monthly series from our good friend Gregg Ratliff. In 2009, Gregg’s wife Nancy was diagnosed with ALS, and he became her full-time caregiver for the next seven years. In his series, “Perspectives: It’s All in How You Look at it,” Gregg will share his insights on ALS and the impact it has on families.