Decision Day – My Story

. March 24, 2017.
Health-Toledo-Death

April 16 is National Healthcare Decisions Day. Take time to talk to your family about your end-of-life wishes. The Advance Care Planning Coalition of Greater Toledo can assist you, free of charge, with initiating family conversations, getting the necessary forms and filling them out. Contact them today at 419-725-0523. When our father was diagnosed with Alzheimer’s disease, we knew there would be a time when he would be unable to make his own decisions. What we didn’t know is how quickly that time would come. We thought we had taken care of everything. We had my father’s finances put in order so that no one could take advantage of an aging man with Alzheimer’s. We had my father’s monthly bills put into my sister’s name so they would be paid on time. We updated the Last Will and Testament and we had caregivers coming to the house on a regular basis. My father’s condition worsened. He didn’t always know us or his grandchildren. On most days he couldn’t remember if he had eaten. Despite our best efforts to keep my father healthy, he developed pneumonia. We saw the doctor who prescribed some antibiotics and sent us home. We were grateful the doctor didn’t admit my father to the hospital because we knew that a hospital stay for those with Alzheimer’s often leads to increased confusion. One night when he started having trouble breathing. We called the doctor and were told to take my father to the emergency room. By the time we got to the hospital my father was struggling for every breath. Even if he had not been struggling to breathe, my father was unable to make his own decisions because the Alzheimer’s had taken its toll. So, the emergency room doctor asked if we would give our consent to help my father breathe by putting a tube into his lungs and hooking him up to a machine that would breathe for him. Of course you have our consent, help our father breathe!” We never asked ourselves what our father would want. How would we know, we had never talked about it. Over the next few weeks we were asked to give our consent many times. Sometimes the decisions were big, sometimes small. The doctors tried several times to remove the breathing tube, a process called “weaning.” It didn’t work. We were asked to give our consent to perform a surgical procedure to create a tracheostomy. We were told weaning is sometimes more successful when the breathing tube is in the trachea instead of the mouth. We were asked to give our consent to insert a feeding tube, another surgical procedure that would help my father keep up his strength because he was unable to eat, drink or take his medication. When he ran a fever, we were asked if we would consent to antibiotics. When he became agitated, we were asked if we would consent to keeping him sedated. Even though it became harder and harder to watch what my father was going through, we would give our consent without knowing what our father really wanted. Our father’s body finally gave out and he died in the intensive care unit with a tube in his trachea, a tube in his stomach, a tube draining urine and several tubes providing medication. Is this something he wanted? Is this something we wanted? How had this happened? Now I know this happened because as a family we never talked about the “what ifs.” While we were busy making sure everything was being taken care of: the bank, the bills, the Will, we forgot to take care of the most important thing, understanding his wishes for care at the end of life. Because we didn’t know what he would want, we were left to make decisions on our own at a time when time was of the essence and emotions ran high. I don’t think this is how my father would have wanted it, but I don’t really know. I never asked. Please take the time to talk with your family. Ask them what they would want in this situation, tell them what you want and then write it down. Don’t wait. Do it while you have the chance, before a crisis occurs.

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