Having a Voice As a Caregiver
by Donna L. Scrafano
It has always been important for me to be heard when I felt an injustice was occurring against myself or another. Most appreciated this quality of my personality. Some, of course, did not. For most of my life there has been someone attempting to prevent me from speaking out or expressing an opinion. Those people included family members, certain teachers, even colleagues amongst other individuals.
As a child, I didn’t seem to have a filter. Growing up, there were many learning experiences on how to approach a situation and how to express myself about it. The most difficult thing to learn was how to shut my mouth and walk away.
Being my father’s sole caregiver, I’m glad that I have the gift of advocacy, the gift of speaking out—and fortunately, the wisdom to know when to walk away. However, it took me until the age of sixty-five to apply this skill with my own family—an absentee brother, to be exact. Absent from just about every aspect in the caregiving for our elderly father, this brother would question, scrutinize, and try to minimize just about every expense related to our father’s needs. Maybe he thought he was contributing by being a complete and utter negative nuisance? I didn’t need “big brother” looking over my shoulder. I needed support in the care of our father—performing the many, many tasks involved in trying to deliver the best care for a loved one.
For the last almost four years, in addition to the stress of being a caregiver, I would constantly wonder if my choices regarding my father’s needs were going to be approved or denied by my brother. I would wait for the e-mail or text that would question every little expense attached to my father’s needs. Never was there a phone call or conversation. Always there was a blaming or shaming text or e-mail. I would first respond with explanations in an attempt to have him understand our father’s needs, but, of course, these fell on deaf ears. Then the sixteen-year-old within me would rear her ugly head, and I would angrily remind him of how little he was doing for our father. His response was always the same: “You chose to do this.” Sounds like a great title for another article.
Due to the lack of support from this brother, who once lived about ten minutes away, and other logistical reasons, I eventually moved myself and my ninety-year-old father into a shared home nearer to my own children. This new living arrangement was an excellent decision for both myself and my father. I have the support I need, and my father has consistent interaction with his grandchildren, great-grandchildren, and, God willing, he will have the pleasure of meeting his great-great-grandchild, due later this year.
Following this wonderful move, my brother became even more critical of how I did things regarding our father. Thank goodness I had the countless comments from doctors, educators, social workers, friends, family members, even complete strangers, who all had nothing but positive feedback regarding how I cared for my father. It took all of them to offset the toxic negativity that my brother consistently directed toward me and everything I did.
And then it happened. The final toxic e-mail questioning, scrutinizing, blaming, and shaming. Well, final for me. My daughter told me, “Mom, stop letting him get to you! You’re doing a great job with Pop-Pop, and he’s just a miserable person. You’re not going to change him.” It was at that moment—with my heart racing, my face turning bright red, my anger at a near all-time high—that I decided to stop. Just stop. I know what I know. That’s all that matters.
If you are reading this article and experiencing a similar situation, take inventory in all the good you are doing for your loved one. And do not allow another to take your peace, your joy, your sanity, and, most of all, your power.
Artwork by fellow Silver Sager Seth Fitts (US) “Bird Whose Voice Was Thin”
Donna began her journey in Human Services in 1983. During the next 35 years she held various positions and formally retired in 2018. She writes on an array of social issues. Donna's relaxation time includes walking her Lab, Roxy, having fun with her seven grandchildren and two great-grandchildren, writing for Silver Sage, spending time with friends and family. Her last full-time position was providing care to her father. Since that has ended, Donna is taking the time to invest in her own self care and interests.