Preparing while blindfolded

I am constantly reminded, and for all practical reasons rightfully so, that I must prepare myself for my decline. I might have included the adjective "inevitable", but I can't get myself to believe in the term on any level. The minuscule "Pollyanna" buried deep within my skeptical soul refuses to allow certainty of any negative connotation to exist. I think this is a good thing. I've talked about hope before, but have avoided hopelessness because the term provides nothing useful to me. I don't adhere to it therefore it does not apply to me or my situation.

All that aside, I have discovered a new attitude amongst those who know of my debacle. I am receiving more advice and possibly less sympathy. This is not to say some people have become less sympathetic. As my symptoms become more obvious and restrictive, many people panic at the thought that I am not prepared to take the proper steps (that in itself is a bold, yet irrational term I find to be very funny) to function well. This means: Have I done the paperwork required to procure all the mechanical means necessary to function in the future? Do I know the likely progress of the disease- if I need a feeding tube, do I know how to get one installed (sounds like a stop at the brake shop to me), do I know the process required for placement of a breathing tube? Do I know how to get Medicare to pay for a Stephen Hawking wheelchair? Do I have a plan for transportation of such? Do I know how I will be able to transfer (that is, from chair to vehicle, vehicle to chair, chair to toilet, to shower, to dinner table, etc.), Do I have a caregiver big enough to carry my sorry ass when required? Have I set up supplemental health insurance? Am I poor enough to be eligible for Medicaid? Will I ever be?

Do I have all the answers? No. Am I working on all of this? Yes. The last thing I want is for my family to suffer any more than they already are by denying the necessity of these preparations. Feel safe with the fact that all of these concerns have been addressed and that, while all the answers are not yet available, all the questions have been asked.