Hospice
is so very helpful. After a double infection in November, 2013, our Gary's been on
Hospice in decline since the first week of December. As of this point, he's down at least
75 pounds, so almost 1/2 his weight from a pretty fit 186 at 6' tall. He
is fully bedridden and 100% dependent. He has lost all remaining independent
abilities between December and January. It's been so sad. I'm totally
with you on the second guessing. I've reviewed this entire movie in my head since
Feb of 2012 when I first caught him hallucinating, several times. There
are no easy choices. At some point it just becomes the lesser of all the
evils presented.
All
meds have continued because we are fighting for comfort, including
cognitive comfort. If we only have 8 hours of lucidity total a week,
that is enough to continue. Gary is still on Coumadin (paid for by me)
to prevent clotting because he has a history of clotting with DVT and
embolism and that would cause unnecessary suffering, though hospice is
covering monitoring his INR levels. He has a nebulizer with albuterol
for respiratory comfort due to aspiration issues. He is still on Trazodone, Exelon 13.3mg patch, Namenda XR, Clonazepam, and then Fentanyl subcutaneous pump currently set at 75mcg/hour with 30mcg bolus doses available every 15 minutes, all of which are covered by hospice. I don't accept less than full
comfort in all areas, as his advocate, and all these medications are justifiable for comfort. I don't allow doctors to push me in a corner on meds. We have been through
too much, Gary has suffered from it and I have the proof to show the hospice doctors if they question me.
Neurological
pain is one of his issues because of the changes to so many body functions.
I can't imagine an advanced LBD patient not being in pain
with all the systems that are affected. They just can't express it and
it comes out as agitation, anxiety, and other symptoms. A lot of
symptoms resolved once we got pain managed better.
Gary
is fighting demons of anoxic brain damage layered over Lewy along with
the infections, so continuing the meds I've mentioned is helping to keep
him cooperative and less anxious. If something like kidney failure or another infection comes along, I'm not sure we'll be giving any further treatment or preventative measures to prolong life.
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