The Caregiving Advocate

This summer my eighty-eight-year-old father underwent open-heart surgery. After spending nearly a week in one of Michigan’s finest cardiac hospitals, Dad was transferred to nearby rehab center. As a family, we’d done our homework and had gathered recommendations regarding the facility’s quality of care, maintenance standards, and the staff’s medical and rehab expertise. 

So when Dad’s care during the first twenty-four hours turned out to be . . . um . . . . let’s just say, sub-par, I was not only disappointed, I was alarmed. My father’s life and health were on the line.

I could have thrown my arms up in a huff and berated the staff when we were ushered into a room that smelled like dirty socks. (Dad was later moved at my request.) I could have thrown a fit when I was asked to hike to rehab and retrieve footrests for a wheelchair after my father nearly collapsed from over-exertion because he hadn’t been issued a wheelchair. I could have screamed at the rehab worker who told me the facility didn’t have enough footrests to go around, and Dad might simply have to hold his legs in the air. I could have thrown a temper tantrum when the nursing staff didn’t respond to my father’s call light after fifteen minutes. And I could have given the staff a sample of my lung capacity when I was told I was five minutes over the designated reservation time when I requested to eat dinner in the dining room with Dad (I’d been busy attending to his toileting needs in the absence of staff).

Instead of screaming and berating, I smiled, took notes, jotted down the names of staff — including those who were performing their jobs well and deserved commendation — and placed a call to management the next day. I stated my concerns politely, with documentation of names and specific instances of safety risks, then asked the manager what steps would be taken to assure that my dad’s needs would be met appropriately in the future. I mentioned that the facility had come highly recommended by the medical facility that had discharged my father, but that I felt it was important for me to share my concerns regarding quality of care unless I saw immediate evidence of improvement in several key areas. I also identified several staff members that had cared for my father in a manner I felt deserved recognition. The manager of this facility thanked me profusely and kept me on the phone for more than a half an hour, probing into the details of my experience. It was obvious that his desire was to provide excellent service for residents and their families, and he wanted to address key concerns. In the end, my family chose to keep my dad at this facility, when our impression after the first twenty-four hours had been to run for our lives.

As caregiving advocates, we cannot afford the luxury of letting off steam or ventilating our emotions when our responsibility is to stand in the gap for our loved ones. I believe that the caregiving advocate fulfills their role most effectively when they are —

Articulate:  Caregiving advocates must be more than communicators. We must be able to clearly articulate ideas, information, emotions, fears, and concerns in spite of our feelings of frustration. We need to hone the art of listening and speaking.

Decisive:  As advocates, we often stand in the gap as the responsible party for making decisions. Because those decisions are so often tough, it’s our responsibility to wisely gather and weigh information within the context of its life-changing implications for our loved ones.

Vigilant:  Vigilance includes many areas for the caregiver: the  caregiving environment; medications; our loved one’s physical, emotional, and social changes. If the one we care for is in a nursing home setting, be sure to drop in frequently, on all shifts, and to be watchful regarding the details. Report concerns immediately and document your reports.

Observant:  Watch for details and keep a notebook if you need to. Know the names of staff members and the shifts that they work. Be familiar with the details of your loved one’s surroundings.

Capable: Not everyone should shoulder the responsibilities of a caregiver. The task requires enormous emotional and physical energy. Consider who in your family may be the most capable for the task, recognizing that the role may need to be shared.

Appreciative: Show your appreciation for those who extend hands of care to your loved ones — not only to those in day-to-day contact, but to administrators and maintenance crews. Don’t be the squeaky wheel whose voice is only heard to express a complaint.

Teachable: The caregiving journey is long and difficult, and a teachable spirit will carry a caregiving through to the end. Be willing to listen and learn — from doctors, hospice workers, caregivers, family members, your pastor and church family.

Envoy: An envoy is someone who creates connections and paves the way. Your role as a caregiving advocate is to create the smoothest possible path for your loved one. Listen to their concerns and fears. Give them a voice. Dad taking it easyYou stand in the gap for them, in a place of honor, extending Jesus’ hands of love.

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