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Love one says they feel fine but show a lot of behaviors that says dementia (ie) toilet paper fiasco.

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I think this is one of the most difficult things with dementia - when it's been confirmed by a doctor but the person diagnosed does not understand or remember it. They mostly continue to think they are OK and occasionally will mention that they don't have a mind anymore but are unable to grasp what that means. When the neurologist went over my Mom's tests, he was quite blunt. I felt sick because I couldn't imagine how awful it must be for her to hear all those things. She was upset at the office but by the time we got home, she had just about completely forgotten what he said. Interestingly, though, she does remember the feeling of being uncomfortable and doesn't want to go back to that doctor but doesn't remember the details. I knew I needed backup but getting her to accept someone coming in twice a week was a real struggle. She truly feels she is fine on her own. The only way I could convince her was to go away for two weeks and have appointments set up so she would need a caregiver to take her. As many people have shared here, it is a rough time for sure. But, as I mentioned about the doctor, I think there's more of a chance someone will remember how they felt more than the details of any conversation. You have a lot on your plate - take time for yourself as that is very important!
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As for sundowning, that is tough. I often spend it with my grandma looking at pictures, trying to distract her by talking about other things or taking a walk around the house to change things up a bit. I have rearranged some pills so she takes pills at that time to change up her schedule and have little baskets I made of various toys she can play with and put in and out of the basket that sometimes distracts her. I have tried those busy blankets, giving her blankets to fold as she likes to do that, books to flip through, tried tv and honestly nothing works everytime. Sundowning is really tough. It's the times where she 'wants to go home' only she is home that is the worst.
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My grandma doesn't have a clue she has dementia. She has had dementia for 20 years or so the doctors said and she just carries on like she doesn't have it. We have to remind her constantly she's 88 years old and that I take care of her. I have to remind her that she can't always remember everything and it's ok because she has me. She doesn't know or understand that she has something called dementia probably never really hearing the words. It might be because she's so far into dementia that her brain can't process that she can't remember or just might be that she assumes she's young and healthy. Either way even knowing they have dementia would probably just upset the person having it and cause them to feel lost and hopeless. Probably is best when they don't know and just try to carry on feeling strong and more confident than they are unless they are harming themselves or others or putting people including themselves in danger.
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It seems those with dementia are basically unaware of their situation - at least my Mom is -

She has been in NH 5 years now during which time she never saw Dad - she only mentioned him 3 times but now she talks about him nearly every time I see her but just since he died in Aug - we have not told her as that would not be kind -

However she 'could read my mind' from an early age [to point once I called her & she picked up phone before the first ring because she was calling me] & I wonder if she still is as Dad is on my mind a lot right now
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TO ALL of you, Thank you for the responses and well wishes . I'm sorry to those who have lost love ones... hope you find inner peace and know that he's in a better place no more suffering.
The toilet paper "fiasco" is with my 81 yr old mom who takes wads of this paper and hides it under her pillow , drawers, pocket and wraps it around her coffee cup.
my 94 yr old mother-in-law on the other hand has passed that stage and is now having trouble getting up and down from a sitting position.( both are still sun-downing and that is the part I struggle with as I cannot seem to be able to calm them and it happens when the care givers have all gone home)
yes, I'm getting help. We have care givers come-in 7 days /week to help with cooking and companionship as I still have to work. And have an adult child who lives with us who's bi-polar, a son who's crossing his teens and a child who's away at college...
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I would also note that the condition called Anosognosia, a deficit of self-awareness, a condition in which a person who suffers some disability seems unaware of the existence of their disability. It was first named by the neurologist Joseph Babinski in 1914. Anosognosia results from physiological damage to brain structures, typically to the parietal lobe or a diffuse lesion on the fronto-temporal-parietal area in the right hemisphere. While this distinguishes the condition from denial, which is a psychological defense mechanism, attempts have been made at a unified explanation. Anosognosia is sometimes accompanied by asomatognosia, a form of neglect in which patients deny ownership of their limbs.
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I believe dementia is loss of awareness. I could see my mom in and out. Now she is bed ridden with almost no awareness perhaps seconds at a time :( I miss her so much.
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If you can explain what's the toilet fiasco was, maybe I could give a specific solution. If it's dementia, he's going to lose more of his abilities as time passes on. It's like as if they become like babies again, blissfully unaware of what they are doing. It would be a funny situation, if we had the energy to run behind them. Here are few tips: 1. Buy a glow in the dark tape, such as, flourescent tape (~$10 on Amazon) and stick it on the toilet door. You may also try taping around the toilet seat, so that he can find his way around and where to park his seat during night times. 2, You can offer your help to him, whenever he wants to use the restroom. 3, If you are sleeping separately, then you can set up a audio video baby monitor along with a wifi motion detector on the side of his bed to detect his movements and guide him in restroom activities. 5, Remove unnecessary clutter.  Keep basic things.  Keep the room well-illuminated.  6, Engage him daily in some brain activities.  7, Play soothing music, but keep the noise level down.  8.  Avoid confronting him on memory lapses.  You'll just succeed in stressing him or get confrontational.  9, Above all, be patient. Don't lose your cool. It's not worth it. 
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Hi Marty30,

I can understand your dilemma. My mom had dementia for years and denied it because she really didn't know that anything was wrong with her. One day about 6 months ago, she broke down and told me that couldn't remember how to do anything anymore. She asked what was wrong and I told her that it was not her, but her brain was not working right. Of course, she forgot the conversation. As time passed she got worse and unfortunately I had to move her to a MC unit near both of our houses. She's having a pretty hard time, even though it's been almost a month, but I trust the professionals.

Please keep us posted.
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My wife had dementia for 4 years before she one day asked "What's wrong with me" I was very truthful and told her she had Alzheimers and she never asked me again. I'm not sure she grasped it or just accepted it.
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Lizzy1952, I am so sorry about your daddy. This is a trying time for us all dealing with dementia. Grace and Peace.
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Yes, both my parents were told that they have dementia by the specialist. they really didn't understand what it was. I explained it to them but within an hour or so they forgot about it. my dad passed away a few days ago but mom is still at home with me and shes out in space somewhere. I cant talk to her at all. I have no idea what she is rambling about anymore. its sad to see and deal with. I so miss my dad......
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Welcome Marty30, you've come to the right place. It's difficult for me to go out to attend caregiver meetings, etc., and this site has helped me from becoming 'beyond burnout' .. my mom has Alzheimer's and is in denial if anyone mentions her memory... in many cases, she really doesn't have self-awareness... it's frustrating for everyone!
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When my mom is completely out of it, I ask her if she feels how off she is. She always says no. She feels normal. This despite her trying to put the lancet she uses to check her blood sugar in her mouth instead of on her finger. When she normalizes, I again ask her if she realizes how out of it she was, and she still says no.
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Yes, good answers all the above. While you didn't state exactly what the toilet paper fiasco was, I bet we can all hazard a guess! Blessings to you.
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There are days when they will seem completely normal
and you will then doubt yourself.
With my husband he seems normal for a few days then bam he is gone again.
Some days he will say I know there is something wrong then other days he
will say there is nothing wrong with with him...
Very difficult situation...
You must take one day at a time.
Good luck
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It takes a while to get the acceptance stage to any disease. However, it sounds like there may not have even been notification yet. I would suggest getting some professional help to work through those stages. Dementia is rough because the brain you need to make those mental changes is in the process of destroying itself.
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Quite normal for them to think they're fine. My dad resisted help for months, before we realized he wasn't coping. It is difficult and I hope you find the help and answers. With dementia, I suggest, be gentle, it works better.
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Goodness, Marty, I just had a quick look at your profile. Do you have any support with looking after both of your new house guests??? Please feel welcome here, anyway - I hope you'll find lots of useful information.
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Yes, they were diagnosed by their neurologist but was not told directly as she does believe in doctors results were given to health proxy
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Yes, it is entirely possible for a person with dementia to not know that their behavior or memory are not normal. Or they may sense that something is wrong but use denial to cope with it. Or they may be fully aware that something is not right, and even ask "what's wrong with me?"

Have your loved ones been diagnosed with dementia?
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