Derek has lost fifteen pounds in three months so, of course, the SNF has lifted
the red flag alert and want tests run, etc. I told the nursing care manager
that he doesn't need any tests, he's just not very hungry and that it's part of
the disease process. [Some days he eats well but many days he does not. This
morning I could barely get him to eat a few bites of cream of wheat, which he
likes.] She explained that they [the SNF] are required to recommend these
measures but that I can refuse them, which I did. I suggested offering him ice
cream more often, although he didn't even want that, today. Even though I'm
sure it's the right approach, these 'refusals' on my part always make me feel
somewhat guilty.

Oh Pat, I'm sorry. It is so hard to see these obvious signs of decline, but seeing our LO's remaining in this state is so heartbreaking, and knowing they are suffering is just awful. At some point, AND (accepting natural death) is the right thing to do to help our LO's end their suffering, and if that means a bite or two of ice cream or whatever is all they eat, it's all they eat. Having the staff insist that a person who is in this state is NOT in the patient's best interest, from everything I've read. You've done everything you could possibly do to be an excellent CG, so please don't beat yourself up over this. It is what it is.
Big hug to you - hang in there, Lynn

I know it's best to let things progress and I know the care manager agrees with me about it. But they have all these state regulations that require that, when certain 'red flags' come up, like weight loss, measures to correct it have to be proposed. At least they acknowledge that we can refuse these measures. It's just that, when they write 'wife refused' the diagnostic tests, it looks so harsh. But I understand that it's a CYA measure.

Pat, you are refusing tests [for him]. . If you could make him well, you would beg for the tests. This is the hard part. Stay strong. Dorthea

Dorthea, even if tests could make him better I would beg for them.

The "wife refused" thing would make me feel bad, too, Pat. We are so "pull out all the stops to 'save' lives" in this country today. I cannot understand how doing things that make a person continue to suffer is the "best" we can do. Why isn't AND a normal part of life anymore, especially with a fatal, debilitating disease? Rhetorical question.... Big, big hug to you Pat, Lynn

Pat, I am so sorry, nobody knows your husband better than you. When the time comes for Gary, I will do exactly the same. Thoughts are with you.

Liz