Mom had an appointment with the digestive specialists today. They reviewed reports from the x-ray videos and the SLP's. The reports describe the issues with her swallowing and that she is currently not getting enough nutrition or hydration. The doctor informs Mom that he is scheduling her in 30 days to install a feeding tube into her stomach. She immediately becomes almost hysterical. I instantly interrupt the doctor and inform him that Mom does not want a feeding tube, and that's why she is so upset. He briefly starts to talk about mom's neurologist evaluating her to determine if shes competent enough to make decisions about herself. Again, trying not to get angry, I inform him that an evaluation is not needed. Mom is the ONLY one that can and should make this decision, and she knows exactly what the outcome of her decision entails. I also shared with him that before her symptoms were this bad she created a health care directive that clearly states she does want any form of artificial nutrition. He gave us some more information and told mom to think about what she wants to do and call if she wants to schedule the procedure.
Let me tell you, the car ride home was the longest. I've never been so lost for words. How do you comfort someone you love when there is nothing but bad or worse? What do you say when they ask you for advise on what to do? Where do you draw the line between holding on for as long as possible, while they suffer and continue to lose quality of life?
Mom and I talked until it was time for bed. Shes not 100% sure what she wants to do, but she expressed to me how very tired she is of fighting this damn disease.
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