I took mom to the speech therapist this morning. She was supposed to help us organize the buttons on my mom’s dynavox (her speech device) so she could find them.
But the upshot is that my mom just doesn’t want to use them. It’s too slow, hard, and limiting. She wants to type or write. She’s wordy. Really really wordy. But she can’t type very fast already.
In a few months, she won’t be able to type or write. And she doesn’t want to use any other method. She already can’t use her right hand more than a couple of half hours each day.
I think that your Mom just wants to type/write as long as she is able. Unfortunately she will need to use other methods as time goes on. It’s just like making that soup. I’m sure she got pleasure from being able to prepare the soup and seeing us enjoying it. I don’t think that your Mom is in denial as much as stubborn & she wants to do it her way. Good for her!
She is stubborn. But you weren’t there. Don’t tell me what happened where you weren’t.
You’re right – this isn’t a good strategy. Her thoughts and words might be some of the only truly independent things your mother has, and I can understand her desire to express herself on her own terms, for as long as she’s able to. I’m sure she knows she needs to learn how to use the dynavox, but doing so might represent a big loss of identity right now. But, I can completely empathize with your frustration, and wish that there was something I could say or do that would make this easier for you.
The problem is that she’s already at the point where she can’t participate like she wants to. People won’t slow down to match her pace, and she won’t her words. It doesn’t affect me, but it means she’s going to be left even more behind. Her choices essentially are to say less but mean more, or to get very little chance to say anything at all. And she’s choosing the latter. Which is really really going to suck for her.
That sucks. We had a similar-but-very-different situation with my father, where he was increasingly difficult to understand when he spoke, and after you asked him 2 or 3 times to repeat himself, he’d just get frustrated and mad and not say anything anymore. And he was so goddamn stubborn/in denial about even his hearing loss that he wouldn’t get hearing aids for probably 15 years, let alone even think about some kind of other device.
Play nice with mom
There are tons of other, simpler communication devices out there besides the Dynavox. Did the SLP talk about other options? It wouldn’t be typing, but they can be set up so she can express herself for at least basic needs, and other simple communication. Wordiness is out the window. However, it is ultimately her choice, period, no matter how helpful or good your intentions are. Your mother gets to do whatever she wants in her last days, even if it is not to her advantage, or if you agree with her choices. Hang in there!
::hug::
Helplessness is the worst, when someone we love is in pain or having difficulty, and we can see a way to make it better and they refuse to utilize it, it is frustrating as hell ’cause the helplessness then combines with upset over the obstinacy. Not to mention how frustrating and painful it is for her. It’s an ugly situation and you are right, it just sucks. My heart goes out to you both.
~Aramada
My mom rejected the other devices because they didn’t allow her to type.