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Hi. I've just recently embarked on this Alzheimer's journey with my Mom who is 75. In the past 2 days she hasn't said much more than "deh deh deh deh" when trying to communicate. She still eats pretty well, she gets up to the restroom on her own although will have the occasional accident. I'm not sure how long ago she was diagnosed but I moved home with her last year to be with her full time and take over her affairs. She can pretty much answer yes/no questions. However, sometimes she calls for me (actually calling her deceased sister's name) and goes into the "deh deh deh deh" phase. I used to let her keep going with it, thinking she would eventually say an actual word. She never would. Now, I cut her off and tell her I don't understand and for her to try to give me some words. She will then SAY "You know what I mean". Which I truly don't. But if she can SAY that, why can't she convey other words? So I go thru the list of questions like are you in pain, do you need the bathroom, are you hungry, do you need a hug? I've tried giving her pen and paper to write it but her writing is now only scribbles. My concern is the urgent look on her face sometimes when she's trying to talk. She sometimes tears up which makes me feel totally helpless. Any suggestions would be GREATLY appreciated!

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I don't have experience with dementia, so this suggestion may not be realistic at all.

But over a decade ago when my father was intubated and unable to speak, he still tried to communicate, unsuccessfully, and with much frustration. I made up a sign for him, attached it to something hard (maybe a clipboard), and had words as well as photos of things he might need so he could point to them.

I had photos of the little sponges that were used to moisten his lips, of a urinal, of a blanket, sayings such as "cold - want blanket" and things like that.

You might try that with your mother.
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This is so sad! And frustrating! Indeed, if she can say the words "you know what I mean" why can't she say the words she means? This disease is a huge collection of contradictions! It is beyond frustrating for those who have it and those who love them!

I have not had to deal with this particular frustration and I can't share the experience with you. But I do want to add my hug and compassion for what you are both going through.

BTW, do you questions ever uncover what she wants? Curious.
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I’m wondering if, in addition to the Alzheimer’s, could Mom have had a stroke? I ask this because my husband had one in 2003 and still suffers from aphasia, which means the words are in his brain but won’t come out of his mouth. I often wonder if he hasn’t had another mini-stroke because as time goes on, I am having more and more difficulty understanding him, and he, too, gets angry when I tell him he’s mumbling. His mother was the same way. When she suffered a stroke, she tried to call me and I couldn’t understand anything she was trying to say.

What about consulting with a speech therapist? I’m sure there are ones who make home visits.
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There are several communication apps for iPads, perhaps one of them might be helpful.
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To jeannegibbs- Sometimes my questions work but for the most part she will stutter out "booboo, peepee, eat, cold, hurt". If she is in pain, I'll ask where and she points. Thx for the hug and compassion; I NEED it!
To Ahmijoy- Mom has a retired nurse friend out of state who calls often. She has mentioned stroke and aphasia before. I mentioned it to Moms doctor and they have run test with no evidence of stroke. A speech therapist has just started visiting as of last week because Mom has trouble swallowing her meds (I have to crush them and put in applesauce for her). I have told the therapist about Mom's speech. When she visits this week, I will let her know we have been struggling for 3 days now.
To GardenArtist- That's a great idea. I was thinking about making her an activity pegboard with yarn and strings and such. I will see about making her a speech board.
Thank you all for your comments!
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Thanks for the suggestion cwillie but for me to get her to try to use or understand anything on the computer at this point would frustrate us both all the more. I have downloaded a few pre-K apps for her and she is not interested even if I navigate the games with her. :(
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