Ability to converse & understand is declining rapidly

jmlarue

Finding myself feeling blindsided once again on how quickly vascular dementia can progress from one stage to the next. I'm gobsmacked over how quickly my DH's ability to speak has declined. Even more pronounced is his almost total inability to make sense of what I'm trying to say to him. I've made a real effort to become a woman of few words when answering questions or giving directions, but we're having little success with understanding over the past couple of months. Today, DH attempted to say that he was having heartburn (something he's been troubled with for many years) but he just couldn't find the words. What he said was, "My thing hurts." He pointed to his chest, just below his sternum. A quick check of vitals showed no reason for alarm that it was his heart, so I suggested that he have a couple of Tums. Blank stare. In that moment he had absolutely no recollection what Tums were. I put a couple in his hand and he struggled to swallow them whole. Surprised he didn't choke. It just didn't occur to me that I needed to say, "Chew these." As I said, he's had chronic heartburn (reflux) for years and years, but suddenly he has no memory of it. This is feeling like I'm in charge of a runaway train and it's scary.

Ed1937

I understand where you are coming from. My wife was also diagnosed with VD, but I haven't seen the "falling off the cliff" type symptoms. I have no idea what she is saying part of the time. Speak slowly. use short sentences, and be in front of him when speaking.

Pam BH

I know exactly what you mean. Happening here too.The abrupt declines are very scary. I like your description of being in charge of a runaway train. I did a doubletake when I read about the Tums.I told DH yesterday I was going to take Tums and he asked what they were. Like your DH, he's been using them for years. He loved Tex-Mex food but now doesn't know what a fajita is. For the past few days he thinks I'm his ex-wife which is funny, sweet, and sad. I'm finding out things I never knew and it's somehow refreshing to know that he really seemed to love her despite his painting a different picture in more lucid days.  Hang in there and breathe deep breaths in and out.  I always forget the out part.

jfkoc

I too understand...it is both sad and overwhelming ...

Rescue mom

Last night I asked my DH with Alzheimer’s if he wanted a slice of pepperoni pizza (standard). He looked at me, and at the pizza in front of him, then said “what’s pepperoni pizza?”

  I really was not ready for that. “Blindsided”… yes. 

I pointed at it and he just stared at it. When I put it on his plate in front of him, and I started eating, he ate his. I was done very fast.

DJnAZ

Communicating with my wife is difficult at best. She says things that just don't make sense and asking her to clarify or explain is generally met with a blank stare. This morning she said, "...we need to go up to get out and then get in the out". Considering we had nothing planned I still have no idea what she said or wanted. When I didn't, or couldn't, respond she returned to watching television. I've learned it is better not to question or press her for explanation.

Two years ago her communication skills were basically normal. A year ago she sometimes seemed confused and her statements were strange with words out of place or mispronounced. A lot of what she would say was confusing. But she still generally made sense.

A lot has changed in a year. It is difficult for me to help her if she is not able to tell me what hurts, what she wants or needs. And it is frustrating that she can't help me. Most depressing is that we no longer just talk.

jmlarue

As a follow-up, I am left to conclude that DH has suffered more silent stroke(s) and it has affected more than his ability to speak and understand, He's definitely in the realm of having fallen off that cliff, again. We attended a family get-together yesterday evening at our eldest son's home. He and his wife have given us 4 beautiful grand-children. Their oldest boy (age 20) is going away to boot camp next week, so we all gathered to wish him well as he flies the nest. Once we had returned home, DH's questions about the event revealed that he couldn't remember our grandson's name. I find that particularly distressing because it's the same as his own. Our grandson is, in fact, the fifth generation with the same name. I handled this new discovery succinctly, just cueing him on the first name - no long explanation of the lineage. Then the other shoe dropped. He asked who our son's father is. Clearly, DH had no recollection of anyone at the party or what relationship they had to him. Now, I'm trying to brace myself for the possibility that he doesn't really know who I am, either. To say I'm heartbroken is a gross understatement. I know others here have already been through this with their loved one, so let me ask this,,, should I try to remind DH who these folks are, or just let it go?

Ed1937

jmlarue wrote:

I know others here have already been through this with their loved one, so let me ask this,,, should I try to remind DH who these folks are, or just let it go?

I haven't been down that road with my wife, but I remember when her mother did not know who I was, after knowing me for 50 years. My personal opinion is that you should just let it go. Reminding him that he doesn't know their names might be depressing for him, and you can't expect any recollection to last for any length of time. I'm sorry.

jmlarue

Thank you,, Ed. I had an idea that this is would be the answer.

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CStrope

I was told my DH had Alzheimer's of the Logopenic variety, and it is affecting his speech and logic/reasoning along with his memory.  Before diagnosis, when he was still able to convince me he was just fine, I asked him on several different occasions why he wasn't using nouns.  Everything was I took that there, and we need to get that thing for them, never any specific proper nouns.  Now most of his sentences would not be understood by most people.  

The other day, while I was getting ready for a meeting, he asked me if I needed him to take care of those things in there.  I figured out he meant the few dishes I had quickly put into the sink after making lunch.  I thanked him and said that would be wonderful.   He then looked at me and said, "How would I do that".  It took me a minute to let that one sink in......he had no idea how to wash a few dishes.  Every day its something new.

jmlarue

Isn't it stunning how the dementia brain loses a specific thing in speech, like nouns. Those were the first to go for my DH, too, and I've been told that this very common. Early on in the language decline, I'd have to play 20 questions to figure out who/what/where he was talking about. That was okay for awhile, but eventually became irritating to him, so I had to stop. The next big problem was trying to interpret what he said when he stopped laying bread crumbs for me to follow. Much of the time there is no evident seque - a person he just saw or an activity he had done - that would give me a clue on his train of thought. Perhaps, in his mind, he's been verbalizing his thoughts but, for me, it's like walking into the room just in time to hear the punchline and never the joke. All of these challenges have been hard, but this latest wrinkle (where he no longer understands what I say) is the toughest of all. I clearly have no ideas on how to communicate with a deaf/mute and I can see that this is where we are headed. Not only do I feel incapable, I am unwilling to go there. It will mean placing him in a care facility much sooner than I ever imagined.

Bill_2001

As Victoria2020 shared song lyrics, I will do the same. Get the Kleenex ready.

https://www.youtube.com/watch?v=Av2tCjECd04  

Tumbling Ball 

Manfred Mann's Earth Band

Maybe I'll remember

The old house standing on the avenue
Till the day I die

Maybe I'll remember
The kids coming home from the playground
Sand in their shoes and their mother's eyes

Surely I'll recall the day in my life
When I looked in the eyes of a woman
And I knew right then and there that's my wife

And the world keeps turning
Like a big blue tumbling ball
And the times that you spend
With the ones you love just seem so small

Am I just a drop in the ocean after all

Maybe I will always
Think of myself as a young man
Holding both hands to the rod and the reel

Maybe I will always
Remember the day dad passed away
And I still don't know how to feel

There's nothing I love more than my family
When we all get to heaven
I hope for a minute
That they still remember me...

And the world keeps turning
Like a big blue tumbling ball
And the times that you spend
With the ones you love just seem so small

And the world keeps spinning
Like a big blue tumbling ball
And it's hard to believe
That you ever really played a part at all
Am I just a drop in the ocean after all

And the world keeps turning

Like a big blue tumbling ball

And the world keeps spinning
Like a big blue tumbling ball
And it's hard to believe
That you ever really played a part at all
Am I just a drop in the ocean after all

Copyright 2001, Creature Music Limited.

Ed1937

I'm sorry. This is the part I am afraid of too. That will make it much harder than it is now.

Lynne D

Ugh. Everything my husband says is a non-sequitur. To make things worse, if I do not respond in a way he thinks appropriate (just how do you appropriately respond to babble) he becomes enraged. 

Pills have become an issue as well. He will put all of them in his mouth at once, and try to choke them down, glass of water in hand. I dare not suggest a sip of water, he screams that he is 65 years old and knows what he is doing. Either that or he plops his pills into the water, then there is no hope of him drinking the sludge at the bottom.

I try to have a conversation with a functioning adult at least once daily to avoid insanity.

jmlarue

I was sure you'd understand, Ed.

I feel so badly for you, Lynne. The angry outbursts are really hard to handle, especially when we are trying so hard to keep calm and carry on through this madness. I think this has been the one thing that I most resent about caring for a person with dementia - the loss of my own voice as a means of self-defense. I don't care what anyone says, words can hurt just as badly as physical abuse. Family and friends just can't see the scars and bruises we get from that.

Grams6

I appreciate all of your posts.  "Going off a cliff" is a good way to describe my DH the past few days.  So weird how that's happening...seems like all of a sudden out of nowhere.

He spends most of his day in bed because his back hurts all the time.  I keep track of all his medications, including the Tylenol Arthritis now.  He was doubling up on several before and now trying to double up on the Tylenol.  I honestly don't know what to do.  He's on a heating pad, hot shower, BioFreeze, some exercises, etc. to try to make him feel comfortable.  He's mumbling a lot and I'm having trouble understanding his needs, along with finding the right words and making a complete sentence. On another note...I really don't want to go through a collapse myself before making the decision to place him in memory care. This alz/dementia really stinks for them and their caregivers.

jmlarue

As difficult as it may be getting your DH into a medical consult, I suggest you try. I have chronic pain from rheumatoid arthritis. My primary doctor finally needed to put me on a narcotic pain killer because the OTC meds (like Tylenol) were not effective and I was taking far too many trying to find relief. My liver was being damaged because of that. I take Tramadol every 8 hours and it does a reasonable job of keeping the pain manageable. They don't make me dopey and I've had no gut upsets like one does on the morphine pain killers. Hopefully, you have a compassionate primary care doc who can help your DH get some relief - and, in turn, help you care for him.

Grams6

Thank you

markus8174

There is so little understandable meaning in anything my DW verbalizes to me, I've found it's best just to "go with it".  DW: "We need to get....can't find...yellow"  Me: "Yep, I've looked and looked.  I can't find it either. I'll keep looking." Usually if I can catch the launch of what she says I can help her feel like she's communicating. I bought her a pretty expensive molded silicone realistic baby doll in December. She holds it and tells it "I love you so much!" over and over, then cries for a while. I can sometimes use it as a bridge out of her sadness by interacting with it and supporting her interaction. She communicates with her robot kitties as well: "Shut up! I'm talking to the baby right now!" A bit hostile, but focused and purposeful. It gives me a link I can use to join her in her world. I reassure the kitties that mom still loves them but is busy with the baby right now.  She always cheers up when I say to the cats "Quiet, you'll make the baby afraid if you meow that loud!" She becomes worried that the baby doesn't talk or move. I just keep emphasizing: " Look at her pretty brown eyes! She is just staring at you! I think you are her favorite!" God this is wearing to my spirit, but I still live for her no matter how hard it is to make believe everything is just fine when we are together. She deserves every support I can give her.

CStrope

JmLarue

the loss of my own voice as a means of self-defense. I don't care what anyone says, words can hurt just as badly as physical abuse. Family and friends just can't see the scars and bruises we get from that.

you are so right.....I was always a very talkative and fun person, but I too have lost my own voice as a means of self-defense.  It seems like smiling like a stepford wife and agreeing with absolutely everything DH says is the only way to get through the day without being yelled at and called names.  I feel like I lose a bit of the real me every day.  I often wonder what will I be like when all the pieces have been chipped away, and I am no longer a caretaker.

jmlarue

Markus - you are an amazing empath. I struggle with the "let's pretend" part of all this. It just goes against my grain to fully embrace the irrational world where my DH's brain lives. Perhaps it's an irrational fear that if I step too far away from reality for too long, I will doubt my own sanity. I have a young grandchild who regularly wants to pretend she's a puppy. I can indulge her play for only a short time before I say, "That's enough puppy, now. Let's read a book."

Verl

I agree with just let it go. Reason being, action causes irritation to my wife, it puts her in an uncomfortable position. She cannot respond most of the time, and only understands partial words. As her Alzheimer's disease progresses it becomes more apparent to me to protect her, and show as much love and compassion as possible. It is hard to keep her in the conversation with others, good friends understand, others don't. How could they if they have not been thru this. To me this disease is so variable, what works one day, may not work tomorrow.

We do a day at a time, some days a smile makes it all worth the effort. My DW was first diagnosed in 2009 her age was 56, Final testing was complete in 2014, been downhill ever since. May God bless you in your trials.

Beachfan

My DH, in a MCF since November, lost the ability to converse and understand some time ago.  He no longer knows me or any family members or friends anymore.  He still smiles occasionally, out of the blue, apropos of nothing.  A sweet caregiver said to me several days ago, “He has such a great smile.  I love it when he smiles.”  I hadn’t given it much thought, but now I realize that’s all I have.  When he no longer smiles, I’ll have nothing.  Sad.

Lynne D

Ahhh, CStrope, I do the exact Stepford Wives routine and feel exactly the same way.

Just Friday my HWD’s palliative care physician suggested Caregiver Cards (Amazon) to supplement verbal communication. She said sometimes a failing brain processes input differently and a visual (pictures and printed words) help. 

I am not springing for the $40 bucks right now. But am going to print some pictures and words of my own to see if it helps.

CStrope

Lynne D, I feel like those cards would be just another thing that was my responsibility. One more adjustment that I'd have to make in order to make DH's life easier.  

Paris20

My husband is losing his nouns too. That thing, the gizmo, that guy, etc. pepper everything he says. The worst thing that happened this week, though, followed some wonderful news. Our grandson called to tell us that he and his wife are expecting their first baby. Wow! I was so excited. Yet, as soon the conversation ended, I said to DH, «What fantastic news!»  DH had already forgotten, just seconds after the call. Then when I reminded him that A & A were.expecting a baby, he asked «I’ll be an uncle?» I corrected him but he seemed mystified about the people I was discussing. It made me so sad.