Difficulty speaking (Aphasia)

Thephotogrrrl

My fathers disease started showing with his forgetfulness of memories, words and finding items. Little did we know it would get worse as time went on and it's become difficult to have a conversation with him. He pauses trying to find the words to speak about something. I want to talk to him very badly but it's so difficult. The most we can say to each other is how much we love one another and maybe that's really all that needs to be said right now. It's strange how things have changed, where this man once took care of me as a child, is now someone that needs taking care of. Though we all know that this sort of thing is inevitable, no one is ever prepared for it. 

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. 

jmlarue

Aphasia is one of the early symptoms of certain types of dementia. My DH aphasia has progressed from temporarily forgetting a person's name or what something (like "lawnmower") is called, to now being an almost total loss of all nouns (names of person, place or thing). Just so you know, in the later stage of this speech loss, no amount of questions, guessing, or trying to finish sentences for your Dad will help. In fact, it may actually frustrate him and cause angry acting out toward you. Some folks will become completely non-verbal. It a devastating loss for everyone. Someone suggested the use of a picture card so the LO could point to the item they couldn't name. It may work for you, but didn't work for my DH. Still, it's worth a try.

Ed1937

My wife had no problem being able to say words, but she would get stuck for a word, and that word became "three to elevens" That could mean a bicycle, an animal, a business, or just about anything else. When this happened, I had absolutely no idea what she was talking about. Like "Let's go to three to elevens." What made it worse was when she would get upset with me because I didn't know what three to elevens was. She would get so upset that she might try to leave. Very hard stuff when you can't communicate.

Arrowhead

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.

sandwichone123

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.

​fesk

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.

May flowers

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.

mommyandme (m&m)

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! 

MaryG123

I wonder if your Mom could put the phone on speaker and your Dad could just listen to the two of you talk.  I also avoided calling my parents when they were struggling, and still feel badly about that, even ten years later.  We’re all human I guess.  Sigh.

oehlsena

My mom is always trying to be social. A lot of what she said is complete nonsense: a wordsalad mix of words and non-words, with just random colorful nouns tossed in. Sometimes she can be strangely poetic with it. Sometimes it can be funny. I admit that it can really drive me crazy. The only way that I can bare it sometimes is just to have fun with it. Generic reassuring or comforting responses are good  There is one game I play sometimes that I call, "You know what I mean?" The goal of this game is to make a random comment or tell some short story and to ask her if she knows what I mean. The goal is to get her to say "yes." That is just one way that I communicate with her to make it at least somewhat reciprocal in the communications.

Marp

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.

May flowers

We have a new twist on my FIL’s aphasia, he is speaking in numbers. I have no clue.

One of 6

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"

Thephotogrrrl

I love all of these responses. Having support like this is a life line. Things would be more difficult and emotional without a place like this to talk about our loved ones and the emotions that come with it. It is not easy.

Stuck in the middle

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.

GothicGremlin

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.

quartlow2

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.

apow

Thephotogrrrl -  Are you me? lol - Our ages are almost the same, my dad is also the one with dementia, and also struggles heavily with aphasia. I don't really have much to add here besides what others have said. Just another comment of "you're not alone".  Oh, and the one thing he does remember the words for is that I'm "awesome".

We're trying to set up speech therapy to see if that will help. The understanding is that it won't fix the problem but may at least help us find better ways to deal with it and communicate.

On really good days, he can find some of the words he's looking for and the sentences are mostly comprehensive. 

On good days I can get away with a lot of nodding and "Oh yeah?", "Uh huh", and the like. I don't understand the majority of what he's saying, but I can tell it's not negative and I may can get at least what it's in reference to even if I don't get the specifics. 

On a medium day it's more of a struggle - I try to ask a lot of leading questions and sometimes I'll stumble on the right thing or my mom (who spends the majority of the time with him) is able to grasp a piece of context that I can't. I try to keep my voice even and positive so that I don't sound as frustrated as I feel.

On a bad day I try to ask questions, but I may or may not ever stumble onto what he's thinking about and he gets very frustrated and depressed that he's unable to communicate. Recently my mom told me he wanted me to help him with his phone. When I got there he wanted to get in the car for me to take him somewhere. I'm playing the guessing game on where he may need to go for his phone - Verizon? Walmart? Best Buy? Where did we end up? Lowe's. Because it wasn't his phone at all, it was a home improvement store. What did he want? We still don't know.