Will my dh ever understand he has dementia?
Is there ever a time my husband will realize and accept that he has dementia? After at least 10 years of a slow decline, I’m just worn out from it, and incredulous that he’s still adamant he has no issues with memory. He screams that it’s ME who has the problem. To the outside world, he can seem pretty normal. And he’s not doing wildly inappropriate things—which is almost harder to reconcile. Does anyone else have these feelings of living in a fantasy world where they as caregivers are in a constant state of gaslighting from their mates?
Comments
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A BIG yes!
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Yes. My husband has anosogosia and doesn’t recognize his disease He showtimes at an award winning level. Yet his executive functions have deteriorated quite a bit and is quick to anger toward me.
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He probably never will. An inability to understand their own level of functioning is an almost (but not quite) universal feature of Alzheimer's. The damaged brain does not recognize its own level of damage. It's not denial, but anosogosia.
It can be helpful to avoid pointing out the losses, however obvious, because in his mind he's just fine. That means you must be wrong (in his mind) and it can damage the trust needed to have a smoother caregiving experience.
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I’m just learning about this thing called anosogosia tonight as I’m laying in bed feeling bad that we had such a bad fight about this I lost the desire to even go out to celebrate New Year’s and my sister’s birthday as planned. I truly thought up until now that he surely had some idea how much help he requires in a single day’s time. But now I realize he just plain has no idea. It’s especially hard to try to explain to your mate the things he can’t do or remember, but even more excruciating when he comes back with complete disbelief and angry denials. To make matters more confusing, he is able to do a lot, so he only remembers the things he CAN do, and claims I don’t think he does anything. So usual the situation escalates and I end up locking myself in my room and by next day he rarely remembers. It’s just exhausting, as I guess everyone here understands.
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I think I’d quit trying to explain things he can’t do or remember. That will most likely cause anxiety, fear and anger. If you hang out here long enough you’ll learn that you can’t reason with someone whose reasoner is broke. I found a lot of peace and tranquility by entering into my DH reality, instead of trying to drag him into mine. Sure, I still get frustrated, mad, sad, but not near as often as I used to. I gave up thinking I had to reason with him or explain things. Life is much easier living on his terms, and less stressful for him. I’m the one who can change, he can’t. Adapting to him really changed things for us.
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Yes, I have hardly ever in all these years mentioned the things he can’t do. It’s not until the big blow-ups where he screams and yells about how much he does and there’s absolutely nothing wrong with him, that I’m the problem, that I feel completely exasperated and exhausted trying to pretend like everything’s normal. It’s not, and it will never be, and sometimes it’s just a matter of keeping my sanity to speak up and defend myself. Sometimes I feel I’ve made myself so small by trying to avoid conflict in any way and live in his world, I don’t even know who I am anymore. But I also know, as you say, it’s the only way to survive.
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What about meds, is he taking anything to help calm him down? My DH takes Seroquel and Zoloft. Has helped a lot.
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No meds, and at this point I don’t think I have the energy to go down that path. First, it would be a nightmare just suggesting it. But even if he agreed, it would be me doing everything to facilitate it—the doses, side effects, scheduling doctor appointments, getting him there, trying to help the doctor understand what they don’t see and what he doesn’t know, endless complaining, questions, etc. My father had catatonic episodes of depression, and I spent years of my life trying to keep him above water. I couldn’t have loved him more, just like my husband. But I’m just so tired. I’m running out of everything it takes to try to fix everyone when I can’t even help myself.
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welcome. Sorry for the reason you are here. Your husband can never understand he has dementia. People with dementia have severe anxiety and don’t know why. They usually take it out on their primary caregiver. He may become aggressive. Do you have a DPOA? Medical POA? If so you don’t need his permission to speak to the doctor. I would send a message on the patient portal. I got my husband to see a Neurologist by telling him she was a brain doctor and when she prescribed medication I told him it was to help his brain. I never said the word dementia. You can put the meds in his food. He really should be on anti anxiety meds. Read the book “The 36 Hour Day” it helped me after my husband’s diagnosis. Also search online for dementia caregiving videos by Tam Cummings or Teepa Snow. Your feelings are common for caregivers. You’re angry at the disease. It’s the disease talking, not your husband. The disease robs us of so much. It helped me to see my husband as my patient and me his nurse since he was no longer my partner. It took the emotion out of caring for him. I repeated the phrase throughout the day that I learned here: “you can’t reason with someone whose reasoner is broken”
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Unlike the others, I would not say there will never be a time.
My DM has had symptoms for the past 3 - 5 years, but officially diagnosed in December 2024. I too, initially, thought she was in denial until I learned of anosognosia from this group of Dementia specialist.
My mom, like myself, is a retired registered nurse. She just saw a neurologist 10 days ago. I took mom to the appt with the CD & written report from her last MRI. The doctor reviewed the images in her office, on her pc. Strangely enough, she thought to take pictures of a few of them. When she came back to the exam room, she showed my mom the pictures and told her what they indicated. You know they say, "A picture is worth a 1000 words?" In mom's case, it was. The images somehow have been burned into her brain and she NOW has started telling family and friends that she was diagnosed with Dementia. Needless to say, she insists that this is the first time a doctor had ever told her she has Dementia.🤔
Maybe your hubby could benefit from seeing what his doctors are seeing as well.❓️❓️❓️
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Thank you for your help. The strange thing is how LITTLE anxiety he seems to ha
Yes, maybe that would help. Thank you.
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I doubt he will ever accept that he has dementia. Even if he does, that doesn’t mean he will understand his limitations. My mom knows she has dementia and would not argue with that. The problem is she believes she is in the very very early stages. Her symptoms are related to judgment and decision making, her memory is not so bad (she has vascular dementia). She is so incredibly confident in her ability to do things she can’t. A person that speaks with confidence can be very very convincing. Others don't see the issues or ask her questions about her plans that would reveal the problems. She wanted a toaster oven in Al. Many residents had them so staff said sure. When I actually asked questions about this, she tells me she wants a full size toaster oven (wouldn’t even fit on her counter) so she can bake cupcakes (she is diabetic) and make some of her own meals (paying a small fortune to have meals prepared for her and bring in raw meats was not happening). Even when the deficit is right there in front of her she has an excuse. The tv is not working right, her cell phone is messed up, her hearing aids need to be fixed. She never says I’m having trouble figuring this out. A lot also gets blamed on me. If I would just bring her the sewing machine she could finish her quilt, she is perfectly fine to live on her own, but being the horrible, controlling daughter I am, I take away all her freedoms. It’s hard always being wrong and getting blamed for everything (it messes with your head and makes me second guess myself). So far anosognosia has been without question the most difficult symptom to deal with. Sorry I got off on a little rant there. So no you are not alone. I will attach an article on anosognosia.
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Yes, that’s a good way to describe my DH—he speaks very confidently and is very convincing! And as I’m realizing as most everyone here does, it almost makes everything harder because you’re constantly trying to parse fact from fiction, ie what I feels like gaslighting to the nth degree. Day in and day out. But on the surface and to other people—including our mates—everything is normal. As someone else said, “it messes with your head.” And for the sake of his and my kid’s wellbeing, I WANT him and them to feel as if everything’s normal. But my inclination this time of year to be depressed makes for a doubly difficult situation, because there’s just no room for me to falter.
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I am so trying to do thus. It is soooo hard.
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A big YES!!! And all of the comments I can relate to. Hate that we are all in this, but glad I'm not alone.
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I can definitely relate and now my health is going downhill. Stress...trying to do what everyone says. Don't argue, don't point out the logic, just let it go. I have not mastered this yet.
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Mom was officially diagnosed with dementia 2.5 years ago at age 94, I'd say in early stage 4 at the time. For a couple of years prior, she was aware she was having memory problems, but her doctors just chalked it up to advanced age. We've never told her she has dementia, because it would devastate her, and I doubt she could fully comprehend it due to her anosognosia. She is now in stage 6 in MC and needs help with all her ADLs, yet from her perspective because her short term memory is non-existent, she thinks she is doing all these things for herself.
As far as "He screams that it’s ME who has the problem", the best thing to do in this situation is just to agree with him and say "I'm sorry, I'll try to do better". When you need to hire caregivers for him, you can tell him they are there for you. If he accuses you of stealing something because he's misplaced it, you can say "I'm sorry, I was cleaning…let me help you look for it".
Interacting with someone with dementia is like being in a 24/7 improv play that you never auditioned for. The only good thing about it is that you can recycle the same responses and don't have to constantly come up with new material. You just have to make sure your delivery is cheerful, confident, and makes them feel like you're on their side. People with dementia can still pick up on your mood, energy, and tone of voice.
This is an excellent short film by Rachel Wonderlin, one of my favorite dementia experts. She trademarked the phrase "Embrace Their Reality". She also has a wonderful podcast called Dementia By Day with helpful, short, and to-the-point episodes.
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That is a profound & eye opening video clip. Thank you for sharing.
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SiberianIris, thanks for posting the short video!
Iris
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I love the 24/7 improv play. Perfect description. The movie is a great resource. I will be adding this to my favorites and sharing it often. Thank you!
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yes I am in the same boat. My DH has diagnosed 2022. Has not filed taxes since 2016.
Breaks everything , has bad temper . Blames me for his problems. Wonder why I get upset and argue.
He has cerebral amyloid angiopathy IR.
I resent him.
He is out of control
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have you read the book “The 36 Hour Day” it helped me after my husbands diagnosis. Also search online for dementia caregiving videos by Teepa Snow or Tam Cummings. They are very helpful. It’s the disease talking, not him. I learned 2 things here: you can’t reason with someone whose reasoner is broken and never argue with someone with dementia. Learn all you can so you can help him. We know what you’re going through.
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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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