The DU Lounge

The "system" sucks, but I am also exhausted with pushing my step-father to take responsibility for his own care.

Without going into too much detail, he went for years being "watched" for MGUS. When I became aware of what was going on and learned about the wide range of symptoms he was dealing with, I hooked him up with a specialist that was running an amyloidosis clinical trial. Finally, long overdue testing was done and he was diagnosed with amyloidosis and entered the trial, which was for two groups -- both standard protocols, one with the test medication.

That was 10 years ago. Finally getting treatment was a very good thing, but diagnosis should have happened far, far, far sooner. And over the past 10 years I feel like I'm banging my head against a wall to help him get the care he needs -- and the wall is not "the system" -- the wall is him and his failure to effectively advocate for himself. The disease has a complex set of effects. I feel like I'm pulling teeth to get him to discuss symptoms and get referrals he needs.

Yes, the doctors should be asking the right questions, but over and over when I ask what was addressed in this or that appointment, he has either completely failed to mention any of the obviously heart failure related symptoms, or he has given them a list so long, vague, and varied in terms of seriousness that it would be impossible for any doctor of any specialty to even begin to address.

Anyway, this is just my little vent about trying to help an 85 year-old man -- who is now obviously seriously depressed on top of everything else, but stubbornly refuses to even attempt a trial of anti-depressants; who refuses to install the rails and other needed devices to make his home livable (and he does have the money); who refuses to bring in any sort of help with cleaning, who is not demanding certain referrals that are clearly called for... arrghh.

Not sure what sent me off on this diatribe.