Late last October my brother, who was the local Family Caregiver for my mother, called to let me know that our mom had fallen and an ambulance was taking her to the hospital. Later that day, he confirmed that she broke the hip and I hopped on an airplane to make the quick trip to Georgia. Four hours later, I walked into her hospital room and crashed the party.
The local Family Caregiver always bears the most significant responsibility for their loved one’s health and well-being. You might manage medical appointments, prescription refills, grocery shopping, making sure the bills get paid, or any number of other obligations and events. You are the champion of the routine and the mundane things in the life of your loved one. But when a crisis arises, perhaps other well-meaning family members rush in (like I did) with the best of intentions, but possibly not the best knowledge of your loved one’s current situation.
Family tensions can escalate quickly when the primary decision maker feels that they are being questioned, challenged, and even possibly blamed for the most recent crisis. Feelings bruise easily, and defensive walls come up quickly. Furthermore, well-established routines and lines of communication can easily break down when this situation occurs. In my family’s scenario, my brother felt pushed aside when I, the older sibling, arrived and moved in. I stayed at the hospital with my mother almost around the clock for several days. My brother came and went, and was able to keep his schedule at work while stopping by frequently to check on how our mom was doing. When we moved her back home six days after she went to the hospital, the broken hip repaired but the emotional and psychological damage was irreparable, we settled into a new routine that included around-the-clock staffing with Home Instead CAREGivers, supplemental care from a local hospice provider, and lots of waiting.
After three days at home, with me coaching the CAREGivers and overseeing the hospice staff, my brother encouraged me to go back home to Virginia. “We’ve got this,” he said, “and you need to go home to your family. I’ll call you when you need to come back.” This statement was code language for “Get out of the way and let me be the local Family Caregiver again.” I realized that he was right; I needed to get out of the way and let the new care team find their rhythm, without my constant interruption and need for control. I needed to respect and affirm my brother’s authority as the primary decision maker.
When a crisis occurs within a family caregiving situation, it is essential for the Family Caregiver to know that they are supported and recognized for the valued (and hard) work that they do in their crucial role. It is equally important that they are allowed the opportunity to continue in their primary role as decision-maker, schedule coordinator, and whatever other responsibilities they handle unless they ask for help.
When my brother called me three weeks after I went back to Virginia to let me know that I needed to return, neither he nor I knew that I would remain until our mother’s death on December 21, 2017. She passed away peacefully at home, with me by her side. My brother thanked me repeatedly over the weeks I was there, for handling the numerous details that came up during my mother’s last days. I told him how much I valued and appreciated all that he did to care for our mother over the past five years, and that I was honored to partner with him in her care over the last year of her life. We were both blessed to have each other during those last weeks with my mother.