Logistics became front and center instead of quality time
Submitted by: Chris, Clarkston
Christine and her father dance at her wedding on July 6, 2014. He died on Jan. 1, 2015.
When my dad had terminal cancer, he required a significant amount of care in the final months of his life. What was especially hard was the ambiguity. We didn’t know if this level of care would be required for a year or a few weeks.
I remember feeling incredibly overwhelmed by the total parenteral nutrition (TPN) we were required to give him. A home health aide briefly walked me through how to set it up safely, while also explaining that doing it incorrectly could be deeply harmful. As someone with no medical training, and who at the time lived in a different state, I honestly didn’t know how we were supposed to manage that level of care. How would we not make a mistake with so many different family members pitching in?
I hated that during those final weeks with him there were so many logistics to organize. Medications to keep track of, doctor’s appointments, finances to organize. Logistics became front and center instead of quality time. Just getting through the day was a challenge.
These kinds of family caregiving situations are both incredibly common, yet also deeply personal. We don’t talk about it even though so many are managing the emotional and logistical burden alone. I wish there was stronger infrastructure and better support networks for caregiving and our professional caregivers as well as family caregivers. We can do better!