Lettie from Tennessee

Lettie Kirkpatrick Burress
Caregiving: Take Three

Unlike many of my peers on the caregiving journey, I am not a natural born people helper. Yet I have been “called on” three times for this out-of-my-comfort-zone task and I have spent over twenty three years of my life in that role. And each unique circumstance has stretched me, grown me, and certainly challenged my capacity for caring beyond my natural limits.

My first care receiver came when I was in my early twenties. Shela was my only daughter. Diagnosed on her first birthday with a terminal muscle disease, her life expectancy was two years. However, Shela was a frail, but spunky force of life – she met life head on and kept on living. She never walked, dressed herself, or managed personal needs. But smiling her way through the years, she dominated her four brothers and drove Leggs, her motorized wheelchair, through nearly two decades of a life well lived. She graduated from high school with honors and completed one year of college before moving on to take over her corner of heaven. My greatest lesson from Shela? It is truly possible to be content in whatever circumstances you are in.

In year ten of Shela’s life, I added my grandmother’s care. Initially, she lived independently while I oversaw her life management – doctor’s visits, chauffering, and insuring she had family and social life. But when she “struck” ninety, she required more supervision so we built a living area and added her to our busy household. She reigned there for three years from her brown recliner, offering cookies to the parade of great grandsons, conspiring with Shela to share evening television, and pondering why she was allowed to live so long. She graduated to heaven only six months after our goodbyes to Shela. Her legacy to me? Hearty laughter is possible at any age and slowing down can be a good thing.

I am now living my final and most difficult caregiving saga. My first husband died of cancer in 2000, several years after Shela’s death. Nearly three years later, I married Phil, also a widower. God gave us seven happy years when Phil, at a strong and active age 60, suddenly suffered a massive stroke. He was trapped in his body, left with only his brain and his breath.

After a year in ICU, rehabs, and a nursing home, I brought him home in June, 2013 to manage the fight for his recovery. We (family, hired aides, and me) prepared for his total care that included hospital bed, tube feeding equipment (no food by mouth for over a year), suction machine, endless medical supplies and two hour turning to prevent skin breakdowns.

Now, nearly three years post-stroke, Phil sleeps without turning, bears weight well enough to help, goes on trips and outings, eats out at every opportunity, and even feeds himself. The road ahead will not be smooth or easy, but it is hopeful. I maintain “Pray-ers for Phil”, a daily facebook page of 900 plus cheerleaders committed to follow with us. My life lesson from this amazing man? It’s not over till it’s really over.

No, I am not a “natural” caregiver. But I have been changed in this journey and blessed by the challenge.