Let me start by saying that my mother has moderate dementia (probably vascular) but has no trouble swallowing. But she has shown absolutely no interest in food - well, except sweets, she will always take sweets. I have noticed that she will open her mouth and accept food when her aides spoon feed her but she won't usually pick up her utensils and feed herself.
I have seen her feed herself lately but then, the other night, she acted as if she had no idea what a spoon was.
I am about to bring in all new caregivers and I am wondering what instruction I should give them regarding feeding her.
a) spoon feed her - at least we are getting food in her (but, she may completely lose the skill of feeding herself)
b) coach her through the process of eating but don't spoon feed - she will eat if she is hungry.
Then, we got to the point where she either wouldn't or couldn't do anything for herself. She can't even consistently remember how to push the button on her lift chair because Carol would always run over and push it for her.
I guess I am afraid that eating will be the same and she will eventually become an immobile lump who has to be spoon fed and have everything else done for her.
Dementia creates disabilities, because the brain does not allow the person to do certain things. The ability to function may fluctuate, but, it's not the person being lazy or manipulative. Sometimes, my cousin can pick up her food. Other times, she just looks at it and has to have the food placed in her hands.
People with dementia actually lose the ability to do things like press buttons, pull levers, lift a spoon, etc. It's not one of those things where tough love is appropriate. Only kindness, compassion and care matter. Holding on to the idea that she's being manipulative doesn't really serve any purpose, except to frustrate you. I'd do what is needed, let the staff do what is needed to make her day as comfortable as possible and not fret about it. I'd tell the staff that hand feeding is sometimes necessary. They can respond as the need requires.
Starting her off helped my mother - putting the cup in her hand, placing the sandwich in her hand. Literally doing that bit for her. Reminding or prompting didn't work.
But, I can't shake the feeling that if you don't use it, you will lose it and I hate to see her decline even more.
Mom does not have an actual diagnosis and, according to her doctor, is still only suffering from mild dementia - she showtimes for him. He does keep on ordering carotid artery dopplers on her but nothing has ever shown up. I think the chronic UTI's have finally destroyed her brain.
I think I have to deal with my emotions on tis matter. I feel less resentful wiping her butt than I do spoon feeding her because that, in my head, is the ultimate sign of helplessness. I resent that she declined so fast and I wonder what the point of living is when you get pleasure from absolutely nothing anymore.
Thank you all for talking me down.