Being a professional guardian is both a privilege and an honor, but the job also comes with some heavy responsibilities – including making difficult final decisions with options that are less than optimal.
When I became the guardian of a 96-year-old woman and her 62-year-old developmentally-disabled son, I knew that any end of life decisions I may have to make for her would greatly impact him as well.
I also knew it was only a matter of time before I would likely have to make these important decisions.
The call came when I was at the movies. Ester had fallen and was headed to the ER with a suspected broken hip.
While surgery would fix the problem, both the attending ER physician and the consulting Orthopedist were concerned about her ability to make it through surgery due to her frail condition.
Without surgery, she was unlikely to live more than a few days, and would be in terrible pain.
I was suddenly faced with that difficult decision I knew I would have to confront: whose interests to keep in mind, Ester or her son?
Putting Ester through the surgery was a risk, but if she pulled through, she would have more time to be with her developmentally-disabled son, Ralph. That plan wasn’t really in her best interest, only his.
While maybe in her best interest, not doing the surgery wasn’t in his best interest as it left him with no one. Ester was his only family and had been his primary caretaker for his entire life.
This decision was further compounded by Ester’s status. While she had been on hospice for months, and was very gradually declining, she was still fairly high functioning. Before the injury, she was still walking (with assistance), dressing elegantly for meals with Ralph in the dining room, and continuing to be the lifelong companion to her son.
Now, I was faced with this difficult decision. What to choose?
When I became the guardian for Ester and Ralph, I knew this day would come. After all, that was the point for Ralph being under guardianship as well – so that there was a plan when his mother could no longer care for him.
Previously, I had many conversations with Ester about her fears worrying that Ralph would be left alone, since they had no known family. Not only was she concerned with where and how he would live when she was gone, but she was very worried about being able to pass away knowing she was leaving him behind.
Now, we were facing that very decision.
Ester was in bed in the emergency room. She looked horrible, was in and out of consciousness, and was in severe pain. When she was conscious, she would open her eyes and ask about her son.
“Is he okay?”
“Where is he?”
“Does he know where I am?”
“He should not be alone…”
I had her living will, which outlined her wishes for her life to not be prolonged. I knew what her end-of-life wishes were. And then there was Ralph.
I had the choice to attempt the surgery; after all, she might make it through, even though the odds were slim.
In the end though, I made the decision that surgery was not the best choice for Ester.
She told me she was ready to go, and I told her that I would continue to care for Ralph, that she did not have to worry. She died a few hours later.
I was able to make that difficult decision even though it had less than desirable options.
This is just one of the many difficult and challenging decisions that professional guardians face on a regular basis.
When people ask me why I continue being a Guardian, despite the many issues and difficult decisions I face on a regular basis, I am reminded of these times and these difficult decisions.
Clients like Ester are the reason I am able to keep going, even on the tough days where everything seems impossible. Knowing that I made a difference in Ester’s life, and that I was able to help her move on and pass peacefully without worrying about Ralph or his care, that’s what keeps me going.
This blog is shared by Theresa Barton, the expert behind The Guardian Network with more than 25 years of experience in the field of Elder Advocacy, Care Management and Guardianship. Learn more about Theresa’s work and resources for families, caregivers and health, support and legal professionals here.
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