We Don't Talk Anymore
My wife has ALZ Stage 4, entering Stage 5 this year. There have been many noticeable changes, most obvious is that we don't talk anymore. She is very quiet, sometimes sitting and staring for long periods. Occasionally she tries to speak but can't think of the words and then just drops it. This is creating an atmosphere of loneliness even though we are together all the time. Are other caregivers experiencing this?
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My DW couldn't really conduct a conversation. Her short term memory was on the order of minutes or less. Moreover, she couldn't remember or understand current or past events. She could speak just fine, but she didn't have anything to say. In a social situation, she was silent, because she couldn't contribute.
Oh, by the way, she has a PhD. So sad.
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My wife would stared out the window at a bird feeder or at the TV not really knowing what the story of the show was. She has now been in MC for 16 months. The feeling of loneliness got worse, but eventually I got used to being alone and now I prefer it. I don't think being OK with it is good for me, but it is more comfortable.
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Oh yeah. The first big sign of my DW's cognitive issues was the beginnings of aphasia. She is now down to barely understanding me when I speak and an inability to get out a complete sentence that makes any sense. In a world where everything seems painful, my DW won't stop trying to talk, so I spend all day trying to make sense of her ramblings, which is exhausting. When she takes nap, I'm so dang grateful for the silence.
Hang in there.
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My DH is quiet and is probably moving into stage 6…. He can talk but he rarely initiates a conversation. He can remember things for a few minutes and he will answer me when I ask questions but if I try to have a conversation more than are you hungry or would you like X for dinner/lunch, he gets frustrated and loses the thread of it all very quickly. He used to follow politics with a passion… now he forgets who is president. If I didn't try to engage him, he would say very little all day long. With others, he can showtime for awhile. Yes, it is dreadfully lonesome.
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DW is in early stage 6. As I write this, we are in our 10th hour of her speaking non stop nonsense. She talks to the air, continuously, without end, without purpose or meaning. Repeating the same nonsense over and over, even when I leave the room or step outside. Today is not unusual. I have heard that one day I will miss the days when her voice filled the room. I trust that is true, but it is a difficult perspective to relate to at this moment.
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Sorry you’re here, but we are here to help. Sounds like our life at home. My LW is the same way, stage 4 heading to 5 but after a 2 week program called H.A.B.I.T. thru the psychology dept at Mayo Clinic in Jacksonville, FL. She came out of it. It was a deep depression. She and you need counseling to help you and her deal with it.
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If you don't mind, I'd love to know your wife's diagnosis.
I find this disease so bizarre, yet I'm still trying to make sense of it.
Some pwd seem to talk alot of nonsense. Some basically become mute. While others speak coherently, though repetitively due to forgetting the answers previous given.
I am trying to figure out what makes the difference, is it their statmge or is it their type.
My mom was diagnosed with mild cognitive impairment/early dementia. She is far from being "early" or "mild." I requested, and am hoping, tomorrow's MRI will at least tell me the type.
I am trying to get a feel for what lies ahead of us. I will truly be devastated when mom & I ca no longer call each other before going to bed to say "good night."💔
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my wife diagnosed 3 yrs ago mild dementia, she is now 78 does everything to take care of herself but hasn’t cooked in yrs no driving , short memory has gotten worse in last few months. Tired a lot and gets confused often otherwise not too bad.
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Don't count on the MRI to satisfy your curiosity. You'll learn more from a formal assessment by an experienced neuropsychologist. The Gold standard for diagnosis of dementia is cognitive assessment via interview and tests. This can't be understood within the paradigm of typical medical diagnosis and treatment. Currently medical science has no answer for cause or cure.
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my DW was diagnosed with EO ALZ almost 4 years ago. She has always been rather social and somewhat talkative. I am not that surprised that she ended up an extreme talker as the disease progressed. I would have been more surprised if she ended up being one of the silent ones. However, I expect everyone eventually progresses to the silent phase.
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I'm new to this group, so I'll try to keep my comment on target.
My wife is also late Stage 4 or early Stage 5. I've seen exactly the same behavior. I'll come into the bedroom and find her sitting at her makeup table staring vacantly into space. At another time she will try to start a conversation about something and give up because she either can't come up with the words or has forgotten her original thought. These symptoms are variable, which I think is the ebb and flow of her disease.
I don't want her to give up trying, so when she can't finish a thought that she started I encourage her to not try too hard, but to come back to me when she can remember better.
Yes. This is lonely. Our wives are not fully there any more. I wept today for the first time in a long time as I started to recognize the reality of our losses.
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@Timmyd ... Thank you for responding, as well as sharing a bit of your wife's personality. My mom is also very social and communicative. I hope that continues a bit longer, though I believe she has already entered stage 5.
@bjt84 … She failed her MMSE test and got her diagnosis. I do not believe any oral interviews are capable of telling us the type of Dementia she has. As far as I am aware, only an MRI, or sadly, an autopsy can show the area of the brain where the atrophy is occurring.😭
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I am experiencing the same as CindyBum. My DH, for most of the day, makes sentences and asks questions that are very difficult to decipher. It truly is exhausting, but also does increase the loneliness and isolation we feel by not being able to “talk” together anymore.
Karl, hang in there. We’re with you in spirit.2 -
I came to this site tonight because I have spent the last hour listening to the same college stories over and over - trying to act interested. And answering the same questions over and over again. He was diagnosed 31/2 years ago. We no longer have conversations with meaning. I’m so lonely even though he is here and still talking. It seems strange to be lonely when I’m still living with my husband. I have to remind myself he is a different person now. Some days are really hard.
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So sorry about your Mom. The MRI may or may not tell what type. It may only show white matter disease. My DH was diagnosed with MCI probably vascular after a neuropsychiatric test and CT Scan. However, 18 months later after sending the Neurologist his behaviors she looked at the CT Scan again said the scan and behaviors were consistent with Alzheimer’s-Posterior Cortical Atrophy. So he had mixed vascular dementia & Alzheimer’s. People progress differently based on many factors, one of which is the area of the brain affected by the disease. Look up the 7 stages of dementia chart online and compare to her behaviors. But remember behaviors may not show until later. The chart will give you a general idea but there really is no way to know for certain how she will progress. I kept a list of behaviors. It helped me communicate with my DH doctors. I kept the list hidden from my DH. The book “The 36 hour Day” was helpful to me after my DH diagnosis.
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Yes it’s very common for caregivers to feel lonely. We miss what was and we are grieving for what will never be. If you can get respite help, it helps to take breaks. Come here often for support.
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Thank you! I do hope it will be more definitive than the MMSE and my observance of her symptoms. If not, I will have to make myself satisfied with the unknown.
Yes, I found Tam Cummings' video to be very enlightening. Based on her outline, I believe my mom is in stage 5.
I do plan to get a copy of that book. You guys recommend it so highly.
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Boy I’m in the same part of this journey just like you. My DW doesn’t understand much but continues to talk to me all day long. I have no idea exactly what she is saying so I’ve just started switching up my answers like sounds good, okay with me, I’m not really sure, I don’t think so or whatever you think, etc. And yes I do look forward to when she does doze off.
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I can certainly relate to your post. My DH can easily drone on for an hour talking about his youth growing up in Minnesota and his time in the military, which took place 45 years ago. I’ve heard the same stories as a monologue dozens of times. I’m so bored, but I try to look at him and nod occasionally. A couple of days ago, we were stuck in an emergency room cubicle waiting for some tests to come back. He began telling his life story—just speaking it, not even looking at me, which went on for close to an hour. Then, it hit me why he could be doing this. He has no short-term memory, and he is afraid of also losing his long-term memory. By continually repeating these stories, he reinforces that he still remembers these events. How sad it would be lose your memories and not remember who you are or where you came from. By thinking about his stories this way, I can feel compassion rather than irritation.
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I wish my DH could eloquently tell a story now. I know that it must be tedious to hear the same ones over and over, but I would feel happy to hear some of them now. My DH seems to have forgotten even his long term memory - can’t even make a sensible sentence, so his mostly delusional stories are hard to decipher. So sad for all of the victims of this insidious disease.
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You’ve reminded me of what’s coming down the road. It’s sad to think that I may look back on the present time of this Alzheimer’s journey and think that these were the good times. I send caring thoughts and wish you strength on this journey that none of us want to be on.
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My wife didn't stop talking, but when she did talk, she spoke so softly I could hardly hear her. Eventually, her speech was just words that didn't make any sense together. Now she just makes sounds, but it appears like she thinks that she is communicating.
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Commonly Used Abbreviations
DH = Dear Husband
DW= Dear Wife, Darling Wife
LO = Loved One
ES = Early Stage
EO = Early Onset
FTD = Frontotemporal Dementia
VD = Vascular Dementia
MC = Memory Care
AL = Assisted Living
POA = Power of Attorney
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