THE ODDS (Debbie Does ALS)


A little less red tape

The interview/assessment went rather well, I think. Suzanne, the nurse, was here for just about two hours during which time we filled out about 20-25 pages of information. She even had to do an assessment of my mental capacity which, since I am such a mental giant, I passed with flying colors. The questions were tough: who is our current president? In what county do I live? What is 100 - 7? 93 - 7? 86 - 7? When we reached 65 Suzanne said I could stop -- her usual patients don't normally get that far (but her usual patients are typically in their dotage).

I had to answer questions about those ADLs I mentioned earlier and I believe she was satisfied with my responses. She considers me a high fall risk, to the point she does not feel it is safe for me to be home by myself. When she left she said she was going to recommend five day a week, 12 hour a day assistance. Clearly that is not going to happen at that level at this time, but it is indicative of the care she believes I require.

Now all we have to do is get the medical records into the hands of both long-term care companies. On my to do list is a phone call to the ALS clinic at GW to see if they've made any progress in responding to the records requests.

One thing I know my doctors have done is complete a form I need to request my accelerated death benefit from the life insurance provided by my employer. In order to be eligible for this benefit my doctor must state that I will die within 12 months from my terminal illness. In general, I can talk about this very casually -- after all, I am very practical and don't much think about my expiration date. As well, this form is just a formality and I don't really have to die in a year. That said, seeing it on a piece of paper affects me just a little bit... it's not the spoken word the floats up into the air and disappears behind uncomfortable giggles, it is an 8.5 x 11 sheet of paper filled in by hand by my neurologist that is sitting on my dining room table waiting to be faxed to the insurance company. It's all a tad morbid.

So. Check a couple more things off the list. Now it is time for bed. Methinks I will count sheep and will subtract by sevens.

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