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Posted: Thursday, May 16, 2019 4:54 AM
Joined: 1/6/2016
Posts: 9

Hello all,

Curious to know who else out there has a loved one with aphasia as part of his or her symptoms. I served as my mother's caregiver for a few years and she was one of the relatively few who developed aphasia quite early on...not that the timing matters. Mainly I want to hear from others who have dealt with the extra joy (yes, ironic) of aphasia or other speech problems.


Posted: Thursday, May 16, 2019 8:47 AM
Joined: 5/16/2017
Posts: 859

My mom is at the end of stage 7 + has had extreme difficulty talking for a couple years.

The last year, she was down to yes, no, shrugging + occasional bursts of a few words

‘phew!’  ‘you dummy’ ‘help’

But she could has not been able to have a back + forth conversation for about 2 years.  Prior to that, about two years of  being frustrated by not being able to find words much of the time

Posted: Thursday, May 16, 2019 9:42 AM
Joined: 6/5/2014
Posts: 1590

Hello prlingas....

Actually, the timing DOES matter. My wife was dx'ed with PPA (Primary Progressive Aphasia), which is a relatively rare form of FTD. Her language issues were among the earliest symptoms, whereas people with AD or other dementias may develop aphasia later on. There are three distinct subtypes of PPA, but I'm not sure if they apply to symptomatic aphasia (I think there may be more variations). My wife had the logopenic type; she could define objects, but not name them (AKA anomic aphasia). Other folks have trouble with grammatics, sentence structure, fluency, etc. Many vascular dementia patients have some form of aphasia.

One of the differences between PPA and symptomatic aphasia is that all PPA patients will become wife was down to three words for several years, then just one, and has been non-verbal for about 1-1/2 years now. At that point you must learn to read fascial expressions and body language.

Best wishes to you....

Posted: Thursday, May 16, 2019 9:56 AM
Joined: 5/2/2016
Posts: 50

I do not know what type of aphasia your Mother has going on.  My Mom had Wernicke's Aphasia which came about due to a stroke.  A blood clot hit the Wernicke's area of her brain.  It was a real challenge to communicate with her while I was her caregiver, and the challenge progressed as the aphasia and then dementia increased.  You might benefit from going to a web site called "" and reading through it.  I got some good information from them.

All I could do with my Mom was talk slowly and in simple sentences.  Then allow a good deal of time for her to process what her brain heard.  I also kept Mom out of situations which were heavily language-based, both socially and on the television.  Fortunately, Mom always enjoyed watching a ballgame with me, and language comprehension is not required.

Good luck with your journey.

Rescue mom
Posted: Thursday, May 16, 2019 12:25 PM
Joined: 10/12/2018
Posts: 2515

My DH with diagnosed Alzheimer’s is getting worse with words relatively quickly. He doesn’t just babble total word salad, but he rarely makes a sentence. Trying to figure out what he wanted to say, or ask, is...challenging. 

I think he realizes it on some level, because he has also become much quieter and less willing to be around others. I think he can often tell  from others’ reactions that what he just said makes no sense at all to the conversation. I do know that even before this, he could not keep up with normal conversation. (He has been unable to have a conversation for about a year.)

But ..did he really mean to say what he said? Does what he said make sense to him, in his mind? That’s what I sometimes wonder. 

Posted: Thursday, May 16, 2019 1:26 PM
Joined: 10/9/2014
Posts: 1186

Prlingas wrote:

Hello all,

Curious to know who else out there has a loved one with aphasia as part of his or her symptoms. I served as my mother's caregiver for a few years and she was one of the relatively few who developed aphasia quite early on...not that the timing matters. Mainly I want to hear from others who have dealt with the extra joy (yes, ironic) of aphasia or other speech problems.



I'm curious as to what caused your mother's dementia. We have a family friend where aphasia seemed to be one of the earliest symptoms of her dementia. Her family never told us her diagnosis, but, her personality stayed pretty much the same, so, I suspect AD.  Her sister also had AD. She remained quite mobile for years (I think at least 10) and only recently became bed bound. Her health is now really poor and she just turned 90!

In reading about the Aphasia, it struck me that my LO (cousin, not the family friend I describe above) has lost most of her ability to speak within this last year. She has said no more than a few words within the last year, such as no and yes. She will sometimes make a small nod, but,  mostly, she seems not aware of the question at all.  Often, she doesn't seem aware that I am even talking to her.  She was diagnosed with VD about 5 years ago. Her psychiatrist said that he suspected Mixed with AD about 2 years ago. She is end stage, wheelchair bound, double incontinent, can't feed herself, is on Hospice as of 6 months ago and she is 67 years old. 

Posted: Thursday, May 16, 2019 3:35 PM
Joined: 4/7/2019
Posts: 353

My sister was diagnosed with early-onset AD/PPA last summer.  At first we thought she had had a stroke, but then the diagnosis came in.

It was challenging a year ago, and it's more challenging now.  I wouldn't say there's joy, there may be some things that we both think are funny in the moment and we'll laugh at those things, but man, it's hard.

Talking to her is almost like playing word association because nouns are such fleeting things. She says the words are sitting on the tip of her tongue but she can't get them out, and so has asked us to fill in gaps when she's speaking.

My cousin, who is a special needs teacher has just started working with the two of us to develop non-verbal communication skills when my sister is unable to communicate verbally.

Posted: Friday, May 17, 2019 6:12 PM
Joined: 10/24/2018
Posts: 1480

Hi Prlingas--

Mom has either Alzheimer's or dementia, depending on which date's PCP papers you look at. Makes no nevermind now; she's 91. She's been very slowly declining for a few years in all respects. Good days and bad days as per usual.  Guessing she is transitioning into stage 6 without anything but stress incontinence of the bladder, which she's had since my brother was born mumblety years ago. 

Over the past few months she's shown what I guess is aphasia, and again, good/bad days/minutes/sentences. It is most noticeable when she wishes to express a (positive or imaginative or strongly important)thought she's having. They more she chews it over the worse it gets+anxiety frustration etc! We are not yet good at following her train of thought, but sometimes a distraction works. OROH, "pat" phrases that she probably learned in childhood trip appropriately off her tongue in clear plain unlabored English. 

But then. When she is in the throes of a no good horrible mood, no language deserts her. She speaks with perfect clarity (and reason!), strong voice, and no hesitations for words or concepts.  It happens at times of emotional stress. The other night she wanted me to get her out of there, "to someplace nice". Her reasoning was impeccable: "It's crazy here". Well, you know, it has been. Major management change in January, temporary directors of everything, turnover there  just last month and again last week, and what appears to be some clamping down of rules. If I think it's crazy... she's justified! Not to mention, most of the wonderful caregivers there are from a culture Mom only knows from the outside, not having lived in this part of the country since 1965. The ladies are very loud and happy, only to Mom it sounds like they're constantly fighting and hollering at each other. She enjoys peace and quiet, but she won't find it anywhere in this city that she could live. So on the phone she was very clear and concise. 

And then there are silly fantasy exchanges which have run in the family forever. She's still good with that, thank goodness. The ridiculous can lighten a load very quickly, and leave us laughing, which is kinda how I like it. Think scenery-chewing fake Shakespeare, or along the lines of, "well, Queen Elizabeth has finally invited us to tea! What should we WEAR????"  It used to be the oresident, but she somehow retains the knowledge that she thinks the current administration somewhat, how shall I say, beneath her notice. I guess that's a good time marker for her decline, isn't it lololol!

Posted: Sunday, June 9, 2019 2:03 PM
Joined: 1/6/2016
Posts: 9

Thank you to everyone who responded!

I was a prime caregiver for my mother for over two years. She was diagnosed with Alz in 2011 but the aphasia began fairly early on, which is somewhat rare as it usually develops further into the progression of the disease. I mainly wanted to hear from some others who have experienced aphasia as it has always been a key component of the challenges of communicating with my mom. My sister likes pointing out that the message on the home machine is from when my mother didn't have any speech difficulties, so it's always a reminder of what she used to sound like. All that being said, thank you again for sharing and my heart is with all of you!



Jo C.
Posted: Sunday, June 9, 2019 4:14 PM
Joined: 12/9/2011
Posts: 12714

Hi Paul; I just wondered if you are planning to use this input from the Members for the script you are in the process of developing for the film that you plan to make.


Posted: Sunday, June 9, 2019 5:49 PM
Joined: 1/6/2016
Posts: 9

No, I was just curious as to other people's experiences. The film will be based entirely on my own experiences as a caregiver. I don't want to tell other people's stories for fear of not representing them properly, but I think that we all recognize so many similar elements in each other's stories anyway. I will say that aphasia will play a major part, because I don't want to shy away from that aspect of it, even though it's a tough thing to have a major character with a speech difficulty.
Posted: Tuesday, May 10, 2022 2:52 PM
Joined: 12/1/2021
Posts: 1

Yes, my husband was diagnosed with aphasia first so the doctors looked for evidence of strokes, etc. His memory was fine. But after more evaluations, he was diagnosed with Alzheimer's. We were in clinical trials so he had the PET Scan that confirmed the plaque. He was 64 upon first noticing word issues and he is now 72. He does not understand most words and does not say much other than yes and no. But he is still so positive. My issue as his only caregiver for about 6 years is finding help. He really cannot communicate with anyone, but I have a sense of what he means. No one else does, so it is hard to leave him. He was a successful attorney, but had to retire at 66 because of the aphasia. Living with someone with primary progressive aphasia is very frustrating and heart wrenching. If anyone has any tips on finding caregivers, please let me know.
Posted: Tuesday, May 10, 2022 11:36 PM
Joined: 5/9/2022
Posts: 35

Hi Prlingas...I had to Google what Aphasia was...ha ha.

My mom mixes up her words but she catches it when I ask her to repeat herself, then she says what she means to say.

This whole situation is a total TRIP!!!

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