Primary progressive aphasia. Now what?
May 10, 2011 8:09 PM Subscribe
My mother was recently diagnosed with primary progressive aphasia. What can we expect?
posted by anonymous to Health & Fitness (5 answers total) 3 users marked this as a favorite
My mom, who is in her late 50s, has been suffering with some increasingly severe cognitive dysfunction for the better part of the last decade. Recently, she was diagnosed with primary progressive aphasia. This is something of a shock since we were all expecting it to be Alzheimer's. What can we expect from this? Does anyone out there have some firsthand experience with what the next several years are going to look like?
In a nutshell, mom current state sucks. She has lost her ability to function. She recognizes her kids and grandkids, but has a hard time connecting that the person we call "dad" is the same guy she calls "Bob" (and lives with- he is her primary caregiver). She can't do any the things that she has done for decades: cleaning house, laundry, driving, etc. She needs help to get dressed. She can't figure out how to change the channel on the TV, so she watches whatever channel dad leaves it on. That is the sum of her day, from what I can gather: TV. Reading is so intensely tedious that she does it as little as possible. I am not certain that she eats if dad (or someone else) isn't around. Even so, she is physically healthy and still jogs with dad most days. She doesn't talk much, and is difficult to communicate with. There is definitely no small talk. She can't follow simple requests without help every step of the way (Mom, would you please get me a glass of water? Got me a blank stare until I told her where to get a glass, and what to do next). It is really hard to not think she is pulling one over on us because sometimes the stuff she does is just so ridiculous (I know she isn't). Mom is (understandably) depressed and on a couple different anti-depressants. Losing abilites like mom has must be so isolating.
What happens next? What would make this easier for dad? Us kids provide regular respite care and house cleaning, etc, but he is a self sufficient guy of the "I can do it my damn self" type.
Finally, how did this start from mom's perspective? By the time we all figured out what was going on (for years the diagnosis was "cognitive dysfunction due to depression/anxiety") it was too late to ask her. Since this appears to be a genetic thing, how can mom's kids recognize the symptoms in ourselves or each other before it gets so bad?
Yanmd. Anon because this is not my story to tell.