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Difficulty speaking (Aphasia)
Guiltily, I have days where I don't feel like talking to my parents, I call every weekend but some weekends I just don't want to hear about it. Having a conversation with my father is too difficult and taxing, I can't understand him because of his difficulty with speech and I try to help him along with each word he is trying to say, help finish the thought. And in the back of my head I sometimes worry I am slipping into memory loss. (I'm 37, they tell me too young to have dementia)
I'm writing to see if anyone has a LO that has similar issue with the illness, difficulty holding a conversation with them and how you manage to handle it and your emotions. Any response at all will help. Thank you for letting me share/vent here. I don't know what I would do without this forum.
We sometimes call it “word salad”. Not only does my wife
string together words that don’t go together, she also often speaks very softly
or even whispers. So, not only does what she says not make any sense in the
first place, I can often barely hear what they are. Telling her to speak up or
to repeat what she said doesn’t do any good. I try to figure out if she wants a
positive or negative answer and respond accordingly. If I don’t know, I try a
non-committal answer. Usually she just wants to be heard. Each patient is
different so you have to just try until you find something that works. Keep asking
questions on this forum.
Loss of words was the first sign we had that something was gone. At that point it took about two years and three providers before we got a neurology appointment.
First my dh lost nouns. He can describe things, but there are only about six things he can actually name including his dad, but not his mom. Still, he can converse fine, as long as I'm not trying to get any information out of that conversation, "I went to the place, that place we used to go, where they had that red thing..." I have no idea, but since I'm not trying to get there right now, it doesn't matter.
So I nod and say, Oh yeah! Uh huh. Or oh my! when I can't tell if it's good or bad. Once you let go of meaning, providing that companionship and support might be easier for both of you.
You might also try checking in with you mom first and seeing if there's something he's been talking about or a concern he's had. That context can help make very vague communication a little clearer. You could ask about old stories you're familiar with so you understand what he means even when he can't communicate it: "Dad, you remember that blue truck you used to have?" or whatever will bring that old story to mind.
My mother was similar in that both her long and short term memory deteriorated. Conversations needed to be very in the moment. That takes practice but can be done.
She began having difficulty coming up with words as things progressed, but we were able to still communicate ok. Then she needed to be placed on medication and that worsened her ability to communicate - word salad, as Arrowhead mentioned. There are times she is able to express herself appropriately but much of what she says no longer makes sense. I find this extremely sad and frustrating. I do my best to respond appropriately - either positively or reassuringly. She seems to be ok with that.
It is a hard aspect of the disease for sure. Last year at this time my FIL could communicate somewhat. After his surgery in January, and moving back home with us, he was almost non-verbal. After he was put on Risperdol he has communicated more, but it is a word salad, with a few recognizable phrases and questions sprinkled in.
I just listen and say “uh huh”. If it’s a question I don’t understand, I try to be non commital and reassuring in my answer. It has been hard on my BIL who calls and doesn’t understand him plus the LONG pauses while my FIL is trying to find a word. He doesn’t have the context to guess what he is saying.
One thing that works sometimes is to tell a story back to him that he told you at one point. I have done that with my LO and he will smile or show some signs of recognizing it even if he doesn’t communicate two-way.
The communication or lack there of is one of my saddest trials. Most of my mother’s words are made up with just random consonants and vowels. When she seems to really want to convey something of importance or concern, I usually can’t decipher. She was someone that loved to have deep discussions so I know she’s trying. I just try to validate her by reading her expressions. Maybe if you could see your dads face via Zoom or FaceTime or Skype or something like that… possibly you could reply more easily.
I hope you can find some workaround. I know there will come a day when I won’t hear moms voice so I try to stay upbeat. When my mom lived out of state I also delayed calling her and she could still talk then. Ugh!
Have you asked for a referral to a Speech Therapist?
A Speech Therapist may know of different tools you can use to help communication. I guess there are all kinds of things out now that can be used to help a LO communicate when words fail.
Hello thephotogrrrl, my mom has the same thing. She was diagnosed almost a year ago. We had noticed about 2 years ago mom has trouble finding words, forgetting where her doctor,church and the like. She even fell for a scam about her computer. Last August she had a "stroke" and was hospitalized for 4 days. They call what she has Vascular Dementia. I know where your coming from as I take care of mom the most. At first I was frustrated and so was she bc she couldn't come up with the word she was looking for and I had no idea what she was talking about. But the more I cared for her the more I could figure out what she wanted to say. Yes it is difficult and the one thing my mom does not say is I Love You, not even to my dad. Please feel free to message me and maybe we can help each other. Thanks for "listening"
One of the last things my mother said to me was "I can't talk." She knew what she wanted to say but couldn't find the words. Our conversations became pretty one-sided in the last year of her life. She loved seeing me and I just talked a lot, held her hands, etc.
Emotions? Men are taught to suppress them until we're alone. I could look cheerful at a hanging.
Along with Alzheimer's, my sister also has Primary Progressive Aphasia. It's a bear.
Like Sandwichone123, Peggy lost so many nouns early on. It feels like word association talking to her as I try to figure out what she's telling me.
But we discussed her aphasia early on, and she made it clear that she wants help with words, so I supply them as best I can. Usually she knows the word she wants, she just can't say the word. So, if she's looking for the word "cat", and she can't say cat, I'll ask questions, and eventually I'll hit on the word "cat". Once I say the word, Peggy can say the word. It's weird.
If I can't get it from a vague context, I'll ask more questions - is it one of your friends? Family? Some place you want to go? Eventually I'll get the right answer. I try to make it a game so that it isn't any more frustrating for her than it already is.
Probably the thing that's most stressful to me is that I have to keep an upbeat tone in my voice, and my facial expressions have to match my tone, but I'm usually feeling the opposite of that. But if Peggy thinks I'm upset, it will upset her too, and I don't want a meltdown on my hands.
I have a therapist I see once a month, and that helps a lot. Peggy's in memory care now, so I have time to go to the gym (masked, of course). The gym has been a lifesaver for me.
You're in my heart! Mom's aphasia was progressive. But I didn't realize that there's a type of aphasia that one can recover from with therapy and practice. This is what I found:
Aphasia can be caused by a stroke or other brain trauma that damages the communication part of the brain. Recovery is possible for aphasia that is caused by things like stroke, head injury, explosion, etc. Recovery is not possible from Primary Progressive Aphasia. Aphasia leaves the intellect and memory intact but the ability to communicate is lost.
I'm still learning about it and want to share some information through this video:
https://www.youtube.com/watch?v=4t55td0iyGU This has a long introduction; about 10 minutes. If you want to skip right to General Michael Hayden and Thomas Broussard\Engineer who are recovering from aphasia skip to about 10 minutes and 16 minutes in. Very interesting and hopeful stories from these two highly intelligent and accomplished men. There are also 2 experts in aphasia, which is a type of dementia, talking about the condition.