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Very hard to understand, what can I do?

Dear Deenie 77,
I am too in this horrible situation now, as I watch my husband deteriorate daily and replace words with sounds. I told myself that I will patiently do my best even though I am not able to understand most of the time. Additionally, I cannot ask him clarifying questions, because I realized, he is also loosing the ability to understand what we say...I often show him concrete things or pictures. Instead of just saying “ do you want fruit?” I hold an apple or grapes when I talk and he gets the meaning. Or I run around showing him this or that, until he says yes. If nothing works I say “ that’s OK. We will talk about it later” and I refocus him on something new.
He studies speech many hours every day and he thinks he is doing better...His writing though, has become better, which helps him a lot. He carries a little notebook with him with family names, telephones, etc and point to the word if he cannot say it. He feels successful this way... When he makes mistakes, it breaks my heart, but I do not correct him. What for?
I encourage him because WE ALL NEED HOPE to keep us going.
We watch musicals on TV,
like High School Musical 3, Mary Poppins Returns, Grease etc. They are fun and uplifting.
I have on Amazon Alexa, selected happy music 🎶 in the house and lots of lights around. He enjoys that, he joins in and the house atmosphere is pleasant for both of us.
I think this is an on going balance between witnessing his deterioration and my constant
strive to treat him as “ normal” as possible with the respect any human deserves. It is not easy!!
I follow the motto “ do your best and pray for the rest”.
Sending you wishes for acceptance, patience and calmness, all of which are gifts to our loved one as well as gifts to ourselves.
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Reply to Godguidesme
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Deenie77 Jan 28, 2019
I love your motto.
He cannot comprehend TV anymore even musicals or shows like Mayberry which he loved at one time even called Barney his hero. He only pays attention to the banners that goes across on news channels. He reads out loud these but on anything else he ignores.
talking seems to be his problem as he has said everyone talks too fast. It makes him nervous.
thank all of you that replied, I guess his garbled speech is just another part of this illness which I have to accept. He has lost his nouns/names of most things, calls them something else or points.
Blessings to all.
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Amother idea is to create an album with pictures of various food items, a toilet, grooming activites, etc, that he can point to.
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RushGirl2112 Jan 28, 2019
love this!!!!
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Patience in trying to understand the person. Daddy lost his ability to really talk...and it was heartbreaking. Taking time to sit by him and keeping him calm helped some, but it simply is one more awful way this disease robs a person, inch by inch.
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Reply to Midkid58
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We treat it a bit like charades. I listen and if I don't have a clue, then I ask him to try again and keep it simple. If I still don't understand, I ask him what the subject is and then maybe I can figure it out with questions. I like the idea of breathing and smiling to relax as it gets harder if he stresses out. I hope he never stops trying to communicate with me. The other thing we do is read out loud as he is able to do that just fine and it helps with language/motor skills.
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Reply to Invisible
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Is this sudden? He may have had a stroke which can be treated at the hospital with prompt ER assist! Get him there if this is sudden.
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Levans2008 Jan 26, 2019
Yes if speaking garbled all of a sudden . That is 911 call Time is brain! That is stroke....
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Perhaps can he write down what he/she is trying to say?
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Reply to Chemoangel1967
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Shake your head and smile all of the while, Like you do Understand.
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Reply to Parise
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Listen very closely to try and determine if there is a need in what is trying to be said or if it is just an attempt at conversation. I know it is very difficult but there is some possibility there especially as you learn to interpret the sounds. I always got something for dad to drink, walked him to the bathroom and got a snack. This kind of covered everything he may have been asking for and as time went on I was able to guess some things correctly. It’s not perfect but we can only try to do our best.
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Deenie77 Jan 29, 2019
It seems to be conversational. I have been saying okay or that’s right and smile but he has been in a very bad mood today. He says home often and gets angry when I don’t drive him 500 miles home. I tried a drive around town but when we got back he remained in the car waiting for me to get him home.
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To some degree the answer can depend on the cause, is there a diagnosis for the communication issue? Has a doctor been involved in the problem yet? I know this is said a lot here but it could be as simple as a UTI reeking havoc, Is the patient healthy in all other ways or confined to bed and this is the next system letting go? I ask that way only because it might make a big difference in how much and how aggressively you work to improve the speech, help them learn new communication skills or simply adapt. Can the patient "learn" new methods to help communicate, are they even trying to communicate enough to want to find other ways, sometimes patients have no idea they aren't making sense or being understood and have no sense that people aren't understanding so it isn't bothering them they way it is you. From what I have seen when they are trying to communicate a need or are aware that they aren't getting the response they want/getting their point across ("I'm hungry") it's fairly obvious by either their agitation or visible frustration but other times they are perfectly happy carrying on the conversation they are having, appropriate response from you or not, this is when nods and huh maybe an occasional giggle seem to work best.

If however they are trying to communicate their motor skills just aren't enabling it there are tools a speech therapist can teach you both and the better you know them the more you might be able to figure out what they are trying to say and help a bit. Also offering before there is a need and using yes or no answer questions can help keep them from getting so frustrated, "would you like me to get some fresh water?", "how about using the bathroom"?, "I'm hungry how about you"? "I was thinking about making tuna fish would you like that? No, how about PB&J?"
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Invisible Jan 26, 2019
I asked if it would be beneficial for him to have a speech therapist and they said no. Wish I knew one.
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Not much you can do for the speech. The desease has made it to the part of the brain which controls speech.

You may want to talk to Medicaid about your monthly income. You would be the Community spouse. Your total income would be split depending on what you would need to live. You will not be left impoverished. Your husband may fit the criteria this way.
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