It is always easier to advise others than to take our own advice. This is especially true when it comes to our own families. I frequently tell my clients, “Your loved one is much more likely to listen to me than to you, even if I use the exact same words you did.” When I am talking with a client’s mother, for example, I do not have a history of their family’s relationships. This applies a filter to any conversation and may push buttons. Parents still want to be in charge and not have their children tell them what to do.
I recently found myself in this situation when I was an advocate for my 89-year-old mother during two extended hospital stays. It was an unusual situation because she hadn’t spent any time in the hospital, despite her age and mobility restrictions. My mother was a biochemist whose area of research included red blood cells and platelets, which were issues that kept her in the hospital. The hospital staff was impressed by her intellect.
What are some of the biggest things for me that came out of this experience?
One of my biggest joys was when my mother said that while she didn’t want to be in the hospital, she was happy she got to see me in my professional role. She told me that she was impressed and proud of me. Even at age 60, when your mother says she is proud of you, it means a lot!
In the end, there were too many complications and our family had to make the difficult decision to discontinue treatment and choose comfort care. My mother was still actively participating in decision making and made it clear that she did not want any intubation. She did not want to live a life that would restrict her ability to be actively engaged in doing what she loved to do. I found myself thinking about all the discussions I have been fortunate to participate in regarding end-of-life decisions, including Five Wishes¹ and Death Over Dinner² both of which are excellent resources. I was prepared, but it was still hard. At that point, I couldn’t be the health advocate anymore, I could only be my mother’s daughter, my brother’s sister, and my kids’ mother. I was grateful that we were prepared, and the staff at the hospital was supportive. It made a huge difference.
How has this changed me as a Patient Advocate or Health Advocate? Every time I experience working on behalf of a client or with my family, it enriches my knowledge and my empathy. I’ve grown from this situation professionally and personally, and I can now say, “I have been where you are.” I have shared a few things with the Director of Patient Experience at the hospital because if I were in her shoes, I would want to know, although nothing would have affected my mother’s outcome. My family and I are grateful for the nursing staff and hospitalists there, especially when they let us sneak in my mom’s dog to say goodbye. Shhhh!
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