Posted 6/16/2012 6:46 PM (GMT -6)
I'm a young adult caring for my grandmother who has Alzheimers (stage 6). She has been living with me for 2.5 yrs, so even though there is always a new issue of the day, I have grown pretty comfortable with caregiving. Grandma doesn't talk a lot, but when she does, she is all smiley and sweet and her true personality usually comes through. I let her choose her breakfast (even though she always chooses eggs and toast) and she helps me peel vegetables when it's time to cook dinner. She names her stuffed animals and reads aloud from the book she wrote back when she was an English professor. You get the idea: she's really a doll, ten years after her Alzheimers diagnosis.
Along the way, she became wheelchair bound, lost the use of her left arm, developed cataracts and some other eye conditions, grew increasingly hearing impaired, had a million UTIs and some midnight medical emergencies...all the usual stuff. But I still love having her around.
A few months ago, I started thickening her water, but recently I realized that her hoarse voice, recurrent hiccuping, and the deep cough the pulmonologist wouldn't help me with are all signs of dysphagia. When I slowly and consistently asked her specific questions, she admitted to me that she feels food stuck in her throat and that her chest hurts when she eats. From her symptoms, I would say she has probably been in pain for months and just never said anything. Whenever she choked on her food, I thought it was the recurrent cough the pulmonologist dismissed, and I would feed her slower, smaller bites. But now that I realize it's dysphagia, that's not enough. We have to change her eating patterns. Now that I'm closely watching her expressions and gestures at mealtimes, it looks like even the mashed potatoes are causing her pain. Or maybe that's pain from food she has been inhaling in the past?
She's always in pain at mealtime now. And from what I read, dysphagia is really a problem at late-stage Alzheimers, and it's a leading cause of death. Based on her overall state of health, I had previously thought that we would have at least another 5 years together (she always wanted to reach her 90s). And every time I feed her, I feel as though I am causing her pain nomatter how careful I am. She started coughing in middle of eating baby food!
I am going to take her in to a speech therapist on Monday; I heard that they are the ones who deal with dysphagia. But tell me, how long can people go on with this condition? What can I do to help her reach 90?