Today I'm chatting with my new friend Macy about her experiences as a caregiver to her uncle John. John was a lucky man as he was surrounded by 13 family members who shared the role of caregiver! John lived next door to Macy for the better part of her life resulting in Macy considering him to be more of a father figure.
I'll let Macy tell you more...
My "patient" was my Uncle John, or Jughead, as most people called him. He started off with Bile Duct cancer in his liver, and it eventually spread to his stomach. It was a very long journey from the start of his diagnosis. His battled for 2 years both in and out of the hospital. My family is very close, and do just about everything, so throughout the two years of my uncles battle, we all became caregivers.
What were some challenges you and your family members faced in navigating the health care system?
The hardest challenge we faced was the lack of communication with the hospital staff and doctors. There was always somebody at the hospital with my uncle, yet there never seemed to be anyone around to answer our questions. When we finally received answers, they were inaccurate, and this only caused more stress. This lasted over a year until we finally decided to change hospitals.
If you had to give just one piece of advice to a new caregiver, what would it be?
Do everything you can to make your patient happy. While my uncle was in hospice, he always wanted to go on walks to see the finches, they were downstairs and he had a really hard time walking. Multiple times a day we would walk him to see them even if it took a long time. No matter what he wanted, we would make sure it could happen to the best of our abilities.
What is your favorite caregiver support resource?
Oddly enough, Facebook. There were so many people, near and far, that always asked how he was doing. I would always post updates, and so many people would have encouraging words. Sharing how he was feeling, or what he accomplished for the day became a part of my daily activities.
Do you have any inspirational words to leave us with?
My all-time favorite quote is perfect for this situation. "Life is not measured by the number of breaths you tale, but by the moments that take your breath away"