I thought that looking at an adult and hearing them ask you a question like you should have an answer was difficult. You know what sucks even more… when that adult is now almost completely paralyzed, cannot talk because he just had a tracheotomy and all he can do is mouth “When do I go home?”
ALS sucks. No way around it. You can curse the disease all you want, it simply does not go away. It ravages the body leaving most of the mind intact. As a bystander to the process it really changes you. It makes you see who really is equipped to deal with life and who simply waits for others to take charge. I never thought it would be this hard to make people make decisions… decisions that should have been made long ago. Nobody plans for stuff like this, but they should.
Do you know what DNR means? would you rather be cremated or 6 feet under?
It sucked last November to decide details on the fly for my family. Not only were we mourning the loss of a loved one, there were decisions to be made, phone calls that needed to happen and also money needed to take care of stuff. Death is not cheap.
You would think going through this would make us as a family more aware of being prepared, having frank conversations. Not really. We are still divided on decisions about level of care. We are now basically doing a lot of guessing between what is best for the sick one… what would he have really wanted? is he all there? How long do we hang on.
I cannot answer that question for him. I try to soften the blow by letting him know they still have to try to get him a little better before he can leave. I also tell him that home might not be an option anymore and a specialized clinic is the next step… codeword nursing home/hospice… is it a white lie at that point if the place does specialize on ALS?
I would love to take him back to his home and have him die of “natural” causes. Is that what he means when he asks “when can I go home?”
I wish I knew, I wish I had more answers, better answers… better yet, I wish I knew what his true feelings were. Not sure if the deprived of oxygen still drugged up version of him would think the same as the healthy, vibrant person I remember.
I hold his hand, make every stupid dirty joke I can think of to make him smile. But dam, I never knew a simple question from one of the adults in my life asking me “when do I go home?” would hurt this much. I do hope you are comfortable the remainder of your days, I will do my best to make sure you have the proper care. I am sorry I cannot do more. I do hope you get to go home soon.