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[quote=Anonymous][quote=Anonymous][quote=Anonymous]My father, a lifelong alcoholic, was diagnosed with primary progressive aphasia (AKA “what Bruce Willis has”) at age 75. He died an agonizingly slow death culminating in being “locked in” - he was completely unable to communicate verbally (could not utter one sound) yet was fully conscious and immobile.

He lived/survived for nearly four years in a nursing home. My mother insisted that he be fully resuscitated and so one year in, he “coded” and was “brought back” to an even more diminished state. He continued to receive BP meds and I think a diuretic (he had high BP for decades).

So he lingered on a in a progressively more vegetative state; it wasn’t until he began refusing food that I got my mother to bring in hospice. Hospice advised a DNR needs to be in place and began palliative care in lieu of BP meds. My dad died 6 months later, in his sleep. [/quote]

I am dealing with a parent with PPA now - although we are having trouble getting a definite diagnosis.  Where did you go for the diagnosis?[/quote]

PP back: my father got a diagnosis way back circa 2011. Rather abruptly, he began to use one-word answers and was  
suddenly a man of few words. He had been a brilliant communicator, scholar and highly successful professional. My mom noticed and got him to their GP who administered a baseline memory test in-office. He was referred to a neurologist who administered more tests and the diagnosis.

Doctors discussed that his cognitive decline brought him down to a “normal” level and so he was able to mask his symptoms quite well. I found this darkly humorous.

His decline was relatively stable until he fell and broke his hip. Wasn’t expected to make it through surgery, then we were told that he likely wouldn’t make it out of ICU, then he shocked everyone with a release to a nursing home. From diagnosis to death, it was 6.5 long years-and maybe 1 (pre-fall) was tolerable and not miserable.

All of this makes me want to tighten up my own death plan; I do have a medical directive but need to add details.

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