Have any questions about how to use the community? Check out the Help Discussion.

Spouse is aware of memory loss

Quilter42
Quilter42 Member Posts: 10
Second Anniversary First Comment
Member

Just wondering if anyone has a loved one who is aware of their memory loss. My DH will realize he is forgetting things. He is worse than what he thinks he is at. He absolutely refused to do the neuro-psych test to see where he is at. He has no physical issues to cause dementia so he was diagnosed with ALZ. My mom with vesicular dementia had no idea of her memory loss. So my main question is if others with ALZ are not aware of memory loss, does my DH have it?

Comments

  • trottingalong
    trottingalong Member Posts: 414
    Eighth Anniversary 250 Likes 100 Care Reactions 100 Comments
    Member

    My husband is aware of his memory loss and often tells me he’s “losing it.” He will also recognize he has problems with comprehension. He has stated for years he feels foggy and is afraid he has what his mother had. BUT, at the same time he will say he’s glad he doesn’t have Alzheimer’s/dementia. He tells people that I’m his memory and he panics at the word dementia.

  • mpang123
    mpang123 Member Posts: 229
    100 Comments 25 Care Reactions 25 Likes First Anniversary
    Member

    Quilter, my mom has beginning stage Alzheimer's dementia. She was the one who explained to the PCP that she was having short term memory loss. The doctor referred her to a neurologist and did some basic tests for her. She was not doing everything correctly. Doc checked her B12 level, UA. Is all clear. She tried aricept for 2 nights but stopped cuz it was giving her nightmares. Never got her MRI done and supposed to follow up in 6 months but haven't yet. I'm going to schedule an appointment soon. Mom's memory and confusion is about the same but she is so nervous and anxious. I wonder if she could be on anxiety meds. But she doesn't like to take any meds except her thyroid pill. That makes it challenging. Best of luck.

  • Quilter42
    Quilter42 Member Posts: 10
    Second Anniversary First Comment
    Member

    Dh had an MRI a few years back but didn't show anything. He is 80. Sometimes he refers to being old other times just getting worse. His anxiety gets worse when he can't remember something but only if it is importance to him. Just crazy as he will tell me this then the next sentence will be what day is it while he's looking at a calendar.

  • mpang123
    mpang123 Member Posts: 229
    100 Comments 25 Care Reactions 25 Likes First Anniversary
    Member

    Also, she was diagnosed with MCI. When I bring her to the bank, as an example, she would tell the teller that she has memory problems and to forgive her for being forgetful and confused. She constantly wants to explain herself to people she was talking to. She is aware in this early stage but I'm worried when she will progress and worsen.

  • Pat6177
    Pat6177 Member Posts: 451
    100 Likes Third Anniversary 100 Comments 25 Care Reactions
    Member

    My DH is in Tam Cummings stage 5. He told me the other day that he has lost his memory. All along he has had an awareness that he is “losing it”, “his brain doesn’t work”, that his memory is going. And yet, he doesn’t fully comprehend his losses. Anosognosia is very real but fluctuates in severity. Anosognosia is not denial, it is an inability to comprehend one’s limitations, one’s disease. It varies for everyone with it. It sounds like your mother has pretty complete anosognosia. But not having anosognosia does not mean he does not have ALZ. Or in other words, you can have a sense of your losses and still have ALZ.

  • Quilting brings calm
    Quilting brings calm Member Posts: 2,480
    500 Likes 1000 Comments Fourth Anniversary 250 Insightfuls Reactions
    Member

    In the beginning, Mom would notice her memory lapses and would get quite upset about it. Not so much anymore.

  • ImMaggieMae
    ImMaggieMae Member Posts: 1,028
    250 Likes 500 Comments 100 Insightfuls Reactions 100 Care Reactions
    Member

    My husband told me and some of of friends that he thought he was losing his memory 2 to 3 years before being diagnosed with MCI. He was walking/running for at least an hour a day and in good shape otherwise. We all told him it was just normal aging, that we all were forgetting more in our late 60’s. I was in denial about it for a long time, even after it started getting worse. He was aware of memory loss until he was in moderate stages of dementia. At that point he was just more confused about everything.

  • charley0419
    charley0419 Member Posts: 368
    100 Likes 100 Care Reactions 100 Comments 25 Insightfuls Reactions
    Member

    my DW diagnosis was 21 months ago dementia has anosognosia real bad, at times she’ll say something like “I’m not the same”. But all in all she’s holding her own. At Nurologist yesterday , she hates that drawing of clock and asked where’s 2.55. Hasn’t gotten it right in 2 yrs. SAD!!

  • PKidd
    PKidd Member Posts: 18
    10 Comments 25 Care Reactions 5 Likes
    Member

    My DH has VD. He knows but then doesn't know. It's a roller coaster

    : (

  • harshedbuzz
    harshedbuzz Member Posts: 4,476
    Seventh Anniversary 1,000 Likes 2500 Comments 500 Insightfuls Reactions
    Member

    My dad absolutely knew his memory was impaired and it left him feeling vulnerable and later paranoid. Because of this, he ignored the advice of both his CPA and attorney around setting up a trust and naming POAs.

    That said, he did have anosognosia and was oblivious to other critical cognitive skills like empathy, executive function, reasoning ability and visual processing/spatial reasoning. He also didn't appreciate how impactful his memory loss was.

    HB

  • clarinetist
    clarinetist Member Posts: 158
    100 Comments 100 Care Reactions 25 Insightfuls Reactions 25 Likes
    Member

    Quilter, I often wonder whether Anosognosia is a blessing or a curse. It makes it much harder to get cooperation from your LO, but sometimes the fact that they are unaware of any problem makes them more at peace.

    My DH has known he has dementia since he was diagnosed six years ago. Now, in stage 6, he can’t remember exactly what it’s called, but he knows he has a disease and that the other folks in his memory care have the same thing. This knowledge makes him anxious and depressed, and I wish he didn’t know. Of course that may only happen with progression, so it’s a double-edged sword.

    To answer your question, I think your husband can have dementia and be aware of his memory loss.

  • mrahope
    mrahope Member Posts: 536
    500 Comments Fourth Anniversary 250 Care Reactions 100 Likes
    Member

    I believe that my DH has experienced "selective blindness" around his own issues. He knows his "short term memory" is impaired, yet thinks his abilities to do all kinds of things (driving, handling money, etc.) are intact.

  • ghphotog
    ghphotog Member Posts: 674
    500 Care Reactions 500 Comments 100 Likes Second Anniversary
    Member

    When my DW was in the early stages she sensed something was wrong but as the disease progressed she is oblivious to the disease now. She has been since late 3 or 4. She's late in stage six now.

  • l7pla1w2
    l7pla1w2 Member Posts: 177
    100 Likes 100 Care Reactions 100 Comments 25 Insightfuls Reactions
    Member

    Quilter, I often wonder whether Anosognosia is a blessing or a curse. It makes it much harder to get cooperation from your LO, but sometimes the fact that they are unaware of any problem makes them more at peace.

    My DW has anosognosia, and for me it is a curse. She doesn't think she has a problem, and she's with-it enough that she will challenge me if I were to seek help for her, and ask "Why?" She is now at a stage where she can't be left alone, so I can't make phone calls (she would be listening) or have people come to the house without DW knowing. I would love to go MCF "shopping" , but there's no way. This forum is the only place where I can get support (huge thanks to everyone) and advice, because I can do this without arousing DW's suspicion or curiosity.

    DW goes to a program three times a week. The organization labels it a "Memory Program", but I never mention that. I just tell her she's going to do stuff with Miriam and Sophia, and she likes them. Unfortunately for me, she sundowns just after lunch, and I have to pick her up around 1, not 2:30. At some point I will have to get in-home support, but I don't know how I'll manage to start that.

  • Karl38
    Karl38 Member Posts: 16
    Fourth Anniversary 5 Care Reactions First Comment
    Member

    Two or three years ago my wife was aware something was wrong. She couldn't pay bills and balance the checkbook. She couldn't plan and prepare meals. She couldn't remember the Bridge rules so she gave the game up. Now she has forgotten all that and believes she is leading a normal life. She is quite happy with me doing most everything and she doesn't question it. My best guess is that she is in Stage 4. I have told her a few times she has ALZ but she doesn't seem to understand what that means and quickly forgets it. She is happy and causes me no trouble so I just play the caregiver role and keep her out of trouble.

  • Stan2
    Stan2 Member Posts: 83
    25 Likes 25 Care Reactions 10 Comments 5 Insightfuls Reactions
    Member

    My DW , diagnosed with Alz is aware of her memory loss and aware of her difficulty with problem solving. She voluntarily gave up driving before the diagnoses . She is a participant in her care.

    I sometimes wish she were not aware because the knowledge of what is happening to her terrifies her .

  • Quilter42
    Quilter42 Member Posts: 10
    Second Anniversary First Comment
    Member

    my husband is the same as your DW. He is with it enough to be home alone for awhile. I'm grateful for that but yet worry as issues have arisen during those times. He insists on driving and does good. However, he has called me and said he is lost. It's definitely a roller coaster ride. My mom had it too and we contacted local agency which helped us a lot for assistance

  • Dio
    Dio Member Posts: 713
    250 Care Reactions 500 Comments 100 Insightfuls Reactions 100 Likes
    Member

    Yes, and that's one of the saddest aspects for DH in the early stage, knowing that there's a black hole in his brain and that nothing can be done about it. He used to say, "I wish there's a magic wand that will make it go away!" Now he's in memory care with the right mix of medications, so he seems normal again. But we haven't tested the waters to see how he feels about it, although I'm told by staff that they believe he knows why he's in memory care.

  • M1
    M1 Member Posts: 6,788
    1,500 Care Reactions 1,500 Likes 5000 Comments 1,000 Insightfuls Reactions
    Member

    Quilter: if your DH is getting lost, it's time to take away the keys. I remember those days. Turns out there were more of them than i even knew: a neighbor recently told me that my partner called him a few times when she was lost, because she didn't want me to know. We're lucky that nothing serious happened.

  • AndreaDC
    AndreaDC Member Posts: 1
    First Comment First Anniversary
    Member

    Do you know how to tell the difference between anosognosia and denial? Because my wife frequently denies some of her issues, for example insisting there's no reason she should always have someone with her when going out or never be home alone (because she has terrible balance and has had multiple falls). When we've tried talking together with her PT and even had the PT fill out a form clearly saying she can't safely ambulate at home alone, instead of listening she tries to rationalize why the PT put down the "wrong" assessment. And I'm not sure how much of this is being in deep denial vs anosognosia. Is this the kind of thing they can evaluate for? She is meant to have a cognitive evaluation in July.

  • ronda b
    ronda b Member Posts: 94
    25 Likes 25 Care Reactions 10 Comments
    Member

    My DH is doing this now. He is very happy with me doing everything and acts like there is nothing wrong. So this is normal for alz.?

  • Quilter42
    Quilter42 Member Posts: 10
    Second Anniversary First Comment
    Member

    Thank You everyone for all your comments! My DH is content with me doing certain things. The hardest part is some things he insist on doing (not dangerous) and then messes it up. Then of course, I have to fix it right. I struggle with taking full control as I know independence is still important to him. We had a rough last week over that. But thankfully it has passed😌 I am not sure what stage he is in as I have not researched that information. Knowing that has it helped you?

  • lisa kelly
    lisa kelly Member Posts: 4
    First Comment
    Member

    That must be so hard. That has been the most awful thing, my DH telling me he is afraid. He also knows he has misses, though I am not sure if he realizes it is worse than it was. I don't know how he gets up every day. We fall apart and cry and then say, well, let's try to do something good/fun/enjoyable - even if just for 15 minutes, or 30 minutes. It is heartbreaking over and over.

  • Pat6177
    Pat6177 Member Posts: 451
    100 Likes Third Anniversary 100 Comments 25 Care Reactions
    Member

    AndreaDC, welcome to the forum. It is a great resource and great support. Up at the top of this webpage, in the purple banner is “Groups”. Click on that and then go to the group for newcomers. There is a wealth of info and links that members have posted.
    As to your question, no I don’t know how to tell the difference between anosognosia and denial. Denial can be treated with therapy. Anosognosia is a permanent issue due to the brain damage and cannot be treated. It’s not just seen in dementia but also in Traumatic Brain Injury. Chances are, if she has dementia, it’s anosognosia.

    You don’t say what symptoms of dementia your DW has. For the sake of discussion, I’ll assume that she has dementia. If so, you will not be able to have a rational conversation with her. Dementia affects one’s executive functioning. Trying to convince her using reasoning will likely fail. You need to get creative and come up with a fiblet to use. Don’t think of fiblets as lies. Lies are to deceive, fiblets are to relieve per one of the dementia specialists on You Tube. I tell my DH that the inhome caregiver is there for me - to do housekeeping. Is there a reason why you would want someone doing something at the house? Is there a college in the area? Perhaps you could say that the person is a PT student that needs to do practical experience to get her degree.
    Keep reading and posting here on the forum. Most of what I know about dementia, I’ve learned here.

  • upstateAnn
    upstateAnn Member Posts: 103
    100 Comments 25 Insightfuls Reactions 25 Care Reactions 25 Likes
    Member

    my DH remains well aware of his failing memory and that he has dementia. It helps so much.

  • JDancer
    JDancer Member Posts: 462
    Fourth Anniversary 100 Care Reactions 100 Likes 100 Comments
    Member

    When a PWD is "in denial," it's actually anasognosia.

  • JDancer
    JDancer Member Posts: 462
    Fourth Anniversary 100 Care Reactions 100 Likes 100 Comments
    Member

    A PWD, especially one that gets lost should not be driving. How would you feel if you got a call your LO was in a fatal accident?

  • Elizabeth607
    Elizabeth607 Member Posts: 27
    10 Comments 5 Likes 5 Insightfuls Reactions 5 Care Reactions
    Member

    My husband is aware that he has AD. His Mother had Dementia and his older brother has it also. Neither were tested for AD as my husband was. He thinks the Leqembi infusions are making him better. He has not driven since October 2023. It was a problem for a couple of months, but he got over it. I do want to mention that there were a few fender benders I noticed. When I asked him about it, he said he didn't know what happened. I think he did know, but didn't want me to know. When I am driving him somewhere he likes to "prove" his memory, whether it be for him, me or both. He doesn't always get it right, but, oh well.

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
Read more