Losing the ability to communicate

Ed1937

I don't remember seeing any posts where people are having the same problem we are. I know we have some new members who may not know the story behind my wife, so I'll tell it once again. She is a retired registered nurse, who worked in different places during her career. The place she loved the most was where she worked the 3 to 11 PM shift. For some reason that "3 to 11" stuck in her brain. Anytime she gets lost for a word, that word becomes "3 to 11". It doesn't matter what the word is, the result is always the same.

Yesterday, out of the blue, she asked me "Are you ready to go?". I asked where she wanted to go, and she told me we had to go to "3 to 11". I told her I didn't know what that was. She shot back "What are you? Stupid?". Something similar happens every single day, and she gets pissed because I can't understand what she wants. It started out that would happen once or twice a day. Now it happens much more frequently, and I don't think it will be long before we will not be able to communicate at all, even though she has no problem pronouncing words. She just can't find them. Has anyone else seen where the PWD uses one word or phrase that takes the place of any missing word? 

On a side note, we were watching TV yesterday, and they were talking about booster shots. I told her that I got my booster on the 25th, she got hers on the 26th, and Joe Biden got his on the 27th. She said "Who is Joe Biden?". Another unexpected loss. I guess this is more of a rant than anything else. This disease is anything but a fun time.

Joe C.

 Ed, When I read your post it reminds me of my DWs daily refrain of “I got to go home”. Possibly “3 to 11” is just her variation of the “got to go home” refrain that DW and many other PWD repeat on a daily basis. I have been told that “I want to go home” is really a request to find a space where they feel safe. Possibly the “3 to 11” shift that she always enjoyed was her comfort zone.

On a side note: Last night DW asked me (and not for the first time), “where is your husband?”. That one stings a little bit.

60 falcon

Joe's thought makes sense, it does to me.  But with this disease who knows.  

Communication is getting hard for us too.  My wife has more times where what she says just doesn't make sense. Kind of like gibberish.  For some time now, she's lost the ability to regulate the volume of her voice.  It's fine in the house or in a quiet environment, but if there's background noise like in the car or if I'm in another room, she can't raise her voice and I don't hear what she's saying.  And then of course she forgot what she said and can't repeat it. A lot of the time I have to use gestures and or physically guide her to find the bathroom, to go through a doorway, she doesn't understand turn around, go straight, etc.

And, she asks where my husband is and what my wife's name is, and who's my new wife. Ugh.

dayn2nite2

I'd also assume "3 to 11" means work but you can also try being more open-ended with questions.

Instead of saying "I don't know what that means" which is negative and closed off, say "When would you like to go to 3 to 11?"  See where it goes from there.  Ask her what her favorite part about 3 to 11 is, etc.

Telling her you don't understand is similar to correcting her and that is why she is reacting negatively to it.  Look at the conversation as a journey where you can find out more of what goes on inside her that might turn out fun rather than you attempting to find and fix what's wrong.  

You'll need to become more intuitive and look for less verbal cues as the disease progresses.

Rescue mom

My DH also lost the ability to use the right words, first and usually, nouns. He’d say other words—and say them clearly—that did not make sense in the context, and yes, he’d often use the same word for any and everything. Any animal is a dog, any object inside the house is a bag, etc. 

You had to be delicate trying to figure out what he meant, or he’d get frustrated and upset. As said, you have be more intuitive in figuring out what they want. Yes, it’s very frustrating for everybody involved, and yes, communication is lost or greatly less..

I thought this was a pretty common problem although maybe noticed it here more as it happened to us.

 Also see it in all the comments on this board about being lonely because your LO cannot converse. They can usually say words—DH says lots of words very clearly—but not words that make sense in a conversation.

The “go 3-11” makes some sense to me, only because you said it was her old work shift. From that, I’d deduce (may be wrong, but as example) that she wants to go, if not to work (which indicates memory/time problems as well), but some other place. 

Your shared background and knowing her past is important, to help figure out what she might mean from what she does say.

Much like “I want to go home”when they are home,  as Joe said. That can’t happen, but at least you kind of know what you have to deal with. You have to puzzle out what they’re trying to say, using whatever hints you can find. Like what day2nite said.

Kenzie56

My DH has recently started using his hands to communicate when a word is lost. He says he can't find his...then points to his wrist and I ask "watch"? and he says yes. He points to his ear and I guess "phone"? and we go on a phone hunt. He points to food, things outside (which is a challenge for me), points to his arm for vaccination, etc. It is interesting, words he has forgotten seem to be gone - they don't come and go with him. I memorized his signing and his alternative words. Like your wife's 3-11 could mean "work", my DH uses "good-bye" for retirement, "water house" for our former home with a pool, he also uses green things for trees and refers to our dogs as the black one and the tan one...and the list goes on. I was a foreign language teacher for 30 years, so now I feel I can add "his" language to my resume. I use to make a list of his circumlocutions or work-arounds and updated when a new one was used...but he always uses the same ones so it is easier to understand him and no list is needed. If I am not sure, I verify with him if that is what he means and it usually is. I don't correct him or try to reteach him the word and just continue on with the conversation. It works to keep him from being frustrated. I do have to "translate" when we are with others because they don't understand a thing he says. Oh, I forgot, he uses blah, blah, blah when he can't finish the sentence. Now that one stumps me and I either agree with him or redirect. He is conversing less and less, so I am happy when we can actually have our own language and understand each other.

Lynne D

My HWD, pegged at a 5.5 last month, speaks gibberish save for phrases of common pleasantries. If he needs to communicate something he will pantomime. He wanted me to pick something up at the grocery the other day and could not find the word. He pantomimed making and slicing sushi (which really only worked because he managed a sushi restaurant in the past and I had a pretty good clue).

Other conversation: I don’t even seek to understand. I smile and use words like “indeed” or “I see.” Anything else infuriates him and he goes into a rage.

Paris20

Ed, this reminds me of my husband’s latest symptom. He asks me when we are going home. We haven’t been away for over two months. Last night he asked me how we were going to take the refrigerator home with us. Then he asked if I had made arrangements to bring our beagle on the flight. Words no longer come easily to him. He talks about “You know…that thing.”

During the last month or two the confusion is becoming more frequent. The other day he thought we were in his mother’s house. She died in 1994. Another time he thought we were in our daughter’s house in Florida, visiting our young grandchildren. My daughter moved to California a couple of years ago. My grandchildren graduated from college and one is married. DH still sees them as little ones playing in their Florida pool. His mind is going backwards. He can remember 20-30 years ago at best. Anything more recent is a crapshoot.

June45

Lynne D wrote:

I don’t even seek to understand. I smile and use words like “indeed” or “I see.”

I do what Lynne does.  My husband currently has a hard time putting his words in to a sentence. But I can usually get the tone of it and I will say "I agree with you" or "wow, that's interesting", etc.  If he asks a "when" question.  I usually answer, "this afternoon after lunch", "tomorrow", etc.  So far, he has been satisfied with my answers even though I don't always completely understand what he is saying.

Battlebuddy

I have similar problems with communication with my husband as others. But there is an added  twist in that my DH is reverting to his first language which is Spanish . So a third of the time I can’t understand him because he’s speaking Spanish, a third of the time its random words or two words with nothing attached ( like I want) and a third that makes sense

M1

Boy Ed, amazing how we're all having similar issues.  I'm so sorry she snapped at you, it never gets easier, does it?  The word-finding difficulty has really increased here too, though for the most part I can still figure out what she wants, and (perhaps because she's not so terribly frustrated yet), it's something we can still laugh about.

Not much other humor here though.   Grief and loneliness are daily companions.  I have much to do and not one whit of energy or motivation.  

I was wishing the other day for a revival of the "Quarantine laughs" thread.  But I don't know that I could find it funny now.

Iris L.

Aphasia is a major characteristic of Alzheimer's Disease.

Iris 

LadyTexan

My DH is losing words. He'll want something from the store, for example, but can't think of the word. Sometimes I'll ask questions to try to pin it down, e.g., is it something to eat, is it a vegetable, et cetera.

Another frustration with communication is when DH acts like he understands what I am saying, but he doesn't.....or maybe he is forgetting what we are talking about.  For example, today he asked for chocolate ice cream. We were at the kitchen table. I placed his chocolate ice cream in front of him.

Me: Here's your chocolate ice cream.

DH: Thanks. 

pause

DH: What's that? (meaning the dish of ice cream)

Me: Its your ice cream.

DH: is it chocolate?

And other times, we can communicate okay. He is still a jokester. This disease is unpredictable and heartbreaking.

Best wishes to all of you.

Gig Harbor

Lynne do you think an album of pictures might work for him? You could do a grocery album, a meal/snack album and maybe one for TV shows. He could point to what he wants.

Cherjer

Gig Harbor...that sounds like a good suggestion but not might work for some. I had my grand-daughter take pics of objects in our kitchen...sink, counter, bowl, coffee cupetc. and my son printed them out in color and enlarged them. So I thought if I showed DH a picture of the sink for ex, and a picture of his cereal bowl, he could put his cereal bowl in the sink. All that work did not make a difference. However, worth a try to have the albums!

NylaBlue

When DH can’t come up with the right words, he will often plug in something we were recently talking about; e.g., the bathroom becomes the grocery store. He also uses the same word for objects that have roughly similar (but very different!) functions. The “dirty hamper” might be the waste basket, the recycling bins, the clothes hamper or the toilet. We were watching a hockey game tonight and DH called the hockey sticks “putters”, like a golf club. It is another language, but as you’ve found, the rules keep changing.

CStrope

Interesting that this topic has come up tonight, as I was just discussing this with my daughter.  I was feeling very sad, and she asked me if I was able to pinpoint one of the things that makes me so sad.  I told her the loss of being able to have conversations.  My DH's atrophy is at this time primarily on the left side of his brain, so his speech was one of the first things affected.  For several months before he was diagnosed I kept asking him, "when did you stop using nouns".  And like many of you, if I couldn't figure out what he was talking about, he would get angry with me, so I just quit questioning him......it wasn't long before circumstances came up that led to his diagnosis.

So instead of saying the flowers in the yard are pretty, he will say those things out there look good. My niece is a speech therapist, we often discuss the irony of DH losing the use of nouns in his sentences since those are the first words that toddlers learn.  

Michael Ellenbogen

I can not believe I am saying this but I love your idea dayn2nite2. That is exactly how to handle issues like that.

Ed1937

Thank you very much for all the thoughts on this. It is the hardest part of caregiving for me. I can handle the bathroom cleanups, and the angry words directed at me. That's the easy part. Communication is hard, but not always. I hope you all have a great day today. You need it.

Beachfan

Ed et al,

I don't know if this is a blessing or a curse, but we (DH and I) are at the point where hours pass with no communication, really, no reciprocal conversation at all.  I have adopted the "let sleeping dogs lie" approach and I am not proud of it.  When he is seated quietly on the sofa with soft music on, most of every morning, I don't dare address him, comment, or question him as that will set off a string of gibberish followed by "OK, let's go. Are you ready? Let's go."  I can buckle him into the car and drive 4 hours to the 'shore and I don't dare say a word or he will start jabbering and unbuckling his seatbelt, or reaching for the door handle.  We have made the trip down and back many, many times, but every time, my heart is in my throat, worried that he will become agitated and try to flee.  His sundowning consists of pacing around, jabbering away, making no sense, sometimes stopping and tapping me, lecturing the plants and inanimate objects.  In the evening, if TV is on, he stands in front of the screen and jabbers away just loud enough to be annoying. Lately, but very rarely, he will awaken in the middle of the night, sit up, maybe get out of bed and jabber away in a loud whisper.  He keeps it up on and off for what seems like all night.  If that behavior becomes common, that will surely be a dealbreaker for me as far as keeping him at home.  About once a week, he will say something or comment on something and will make perfect sense.  I give up trying to figure it all out.  I am reduced to creeping around, not making any sounds or talking when he's still; it's like having that newborn all over again!  

Pooh Bear

Ed, and everyone else here,

I feel that most of you are fortunate that you can still get an "English" word out of your PWD.

My husband started to become hard of hearing ages ago.  So long ago, our boys were teenagers (they're now in their 40s).  We (all 3 of us) kept telling him that he "needs to go downtown."  We all knew that meant "go get hearing aids."  Stubborn as he is, he denied the problem and refused until about 4 years ago.  

Hearing aid set #1:  Lasted about 4 months.  He refused to wear them.  Said it made everything "too loud" and was "pissing him off."  They were returned within the 6-month trial period.

A year later I took him to Costco for another hearing test and hearing aid set #2.  Same issues.  Ditto above paragraph.

Another 9 months or so go by, we return to Costco.  They had all his tests and records from last time.  We bit the bullet and opted for the "best" and "most expensive" hearing aids, hoping that would make a world of difference.  No dice.  We were back in the Costco Hearing Aid center every 2 weeks for 6 months to get "adjustments."  The audiologist was ever so patient and kind, and really tried to find the solution.  Yep.  Set #3 was also returned within the 6-month trial period.

Little did I even recognize that was the beginning of signs of dementia.  His hearing has gone from bad to nearly non-existent.  He puts hands to ears, indicating he can't hear, but yet if I make any noise; i.e., washing dishes, putting pots and pans away, run the vacuum cleaner, or God forbid the sound of grandchildren's voices (!!!), etc. he puts on sound-deafening headphones to block out ANY AND ALL sounds.  (The kind one would wear at a target shooting range.)

Gerontologists and neurologists have commented that his hearing loss directly led to dementia.  I'm not so sure, but that's beside the point.  Now he cannot speak.  AT ALL.  If I try to talk to him or ask him a question he mumbles on and on in jibberish.  Completely  not understandable at all, not one syllable that makes part of a word.  I've asked him to "write it down."  His scribbled notes are the same jibberish.  I just shake my head, shrug and try to communicate that "I don't understand, I don't know what you want."  He will continue to try to tell me whatever it is, and it comes out like "there, there, there, there".

One day I wrote him a short note asking if he needs anything from Wal-Mart.  He came back with a note that read "Equate", which is Wal-Mart's generic name for items.  Still not knowing what he wanted, I wrote down "Show me."  He came back with his toothbrush.  Indeed, it was an Equate brand toothbrush!!  That's a Hallelujah moment ... understanding something so simple.  So, yes he got his new toothbrush

We put closed captioning on the TV (for news, etc.) but I know he can't read it.  He wears name brand TV headphones, but still doesn't hear the words.  But, he watches the pictures anyway.

The loss of communication, of understanding even is the greatest loss here.  So far, anyway.  He can't say the simplest of things like, for example:

Hi.

Good-Bye

Good night

Thank you

Please

That was a great dinner

or what hurts the most:  "I love you."

And it's not just me.  Our sons can't communicate with him any better than I can.  We cancelled his cellphone; why pay for a phone that isn't used?  We stopped newspaper delivery; he can't read it and falls asleep with it in his lap.  We had to sell his motorhome and take his driver's license; he was a terrible danger behind the wheel, which is so sad because he spent his entire 40-year career as the truck driver of an 18-wheeler.

So, he sits.  All day.  Stares at nothing.  Says nothing.  Does nothing.  I am at a loss what to do for him.  He doesn't want to go anywhere.  Unless it's a doctor appointment and I insist, he won't get dressed.  He goes to bed at 7:00 p.m. and sleeps until usually 10:00 to 11:00 the next day!  Sure, it gives me  a lot of free time to not worry about what he's doing, but it also leaves me SO alone.  Just lonely.  Bored out of my mind.  Searching for "projects" to do.  I must have the neatest, most well-organized, alphabetized pantry and spice rack in 5 states !!  HaHa

Any suggestions?  Like Ed, I guess this is just a rant.  Forgive me.  I pray for patience, for a miracle, for an end to this nightmare.  

Take care, ya'll

Ed1937

Pooh, I'm so sorry. It seems that just when I think I've got it rough, someone comes by to let me know it might not be so bad after all.

Michael Ellenbogen

IIf  there  is something  I have  learned  about  this  disease is that there is always someone  a much  harder time than  I and that always helps me feel better.  It's hard to imagine  some times but there are so many worse then all of us. I am lucky and that is how I look at it.