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Lately my mother who has short term dementia has been unusually aware that her mind is not working right. She'll get frustrated and say, "I don't know what's wrong with me, my mind is all messed up this morning." "What's wrong with me?"


At first, I just said things like, "Don't worry, Momma, it's okay" but last time she said emphatically, "NO, it isn't okay!" And she's right. I've also tried explaining, "You have a condition called dementia and it keeps you from remembering things, but there's nothing we can do about it, so we'll just deal with it and work through it together." Although this works sometimes, she is still frustrated and, of course, she doesn't remember my explanation past the moment.


I'm wondering if anyone of you has had to answer this question and what response you gave that seemed to help calm their concerns.


Thank you for any ideas or advise.

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When pops asks why he can't remember or becomes angry that he is being told something that he doesn't remember we try to address what he's really expressing and that's usually fear. It is terrifying to even consider that what you think is reality might not be. It is terrifying to have to decide whether or not the familiar strangers around you are lying to you or telling you the truth. For Pops it was all about allowing him to believe what he believes whenever possible and reassure him that we are here to help him, protect him and enjoy his life on his terms. If that means he believes someone is moving his shoes around then we tell him it's a hide and seek game and we all start searching and playing etc. We've had a lot of years to develop techniques that work. It's not always easy and the same thing we did yesterday might not work today. (hugs) good luck on the journey to figuring it all out.
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disgustedtoo May 2019
HAHAHA - hide 'n seek! That would probably trigger old memories from childhood, which they can more or less relate to!

I often say we all need to get creative (and what works today may not work tomorrow, so keep creating!) because what works for one of us may not work for others. All suggestions are worth a try (and I am loving all the creativity being posted in this thread! Wish I could use some of the ideas, but our mom is one who doesn't acknowledge that SHE has a problem!)
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Perhaps just an acknowledgement, something like " yeah, that darned dementia is acting up again, but don't worry mom I'm here to help".
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Thank you all for your responses...somehow it makes me feel validated in feeling helpless? :)
Like Sweetstuff, 12LittlePaws and others suggested, I've stopped mentioning the word dementia and now stick with her simply having problems with her memory. Sunnygirl1, I love your compassion and focus on the positive. I have used this technique and it seems to be very comforting (to both of us).
Blessings to all of you who share in this journey. May the lessons of compassion, patience, acceptance and love nurture our weary souls.
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Depending on her sense of humor you could say she is getting oldtymers and it is going around.

I worked with a 70 year old woman and she would say that when she forgot something, there's that oldtymers again. We all were able to laugh and help her with whatever it was. We all used it about ourselves as well.

To much seriousness over the unchangeable can create unnecessary anxiety.

Don't minimize the situation but treat it with lightness.
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erhilley May 2019
Like this one.
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My mom doesn't ask anymore, but when she did I would tell her she has a memory problem. Using the word dementia in my opinion can cause anxiety and upset and loss of hope/will. She was told back when she was diagnosed, so this is not keeping information from her, but no need to hurt, scare, upset her over and over again.

The long explanation I give my mom is that imagine your mind is like a room filled with filing cabinets. All your memories are all neatly filed away with neatly labelled file folders for each memory. Then somehow the files are all mixed up and the labels are lost and now you don't know which file is what or even what cabinet they belong in. Some of the files you may be able to find everything that was in them and re-label the folder and file it away, but some will never be recreated. They are just missing for good. I told her that is how her mind is. It is searching for a certain memory but it can't find where it is in order to access it. Some memories will be accessed and some never will. She seemed to accept this simplified explanation.
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NeedHelpWithMom May 2019
Interesting analogy. I like it.
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My mom had a stroke and was left with aphasia so it's easier for her to think about it that way though we all know she has dementia as well. It is hard to know what is at play though often so we just remind her that her brain isn't getting enough oxygen so it's processing slower. Then we remind her she needs more water and exercise to help get the blood flowing which will help her thinking. Depends on the day whether thinking clearer is worth getting up and doing some walking or not...but it does help.

My brother also started referring to her "bewitching hour" and she knows as well as we do that after 6pm it's usually not even worth trying to do anything important, she accepts this as her brain and body just being too tired after 6pm and we have all started referring to her bewitching hour to lighten the mood or conversation. Humor helps a lot if you can use it and they can appreciate it.
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disgustedtoo May 2019
LOVE IT!

Also great ideas about saying she needs more oxygen, which can encourage some physical activity, which is also good for her! Encouraging her to work on getting "better" vs replying with downer comments is great!
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I always tried to be honest with my Dad without usual medical terms. That seemed to upset him more and he would call himself 'useless' or 'a burden'.

I used to say, you have a memory problem. It's not your fault and it happens to a lot of us and there are good days and bad days. They can't fix it, but we're going to hang in until they figure out how to.

Just remember, I'm incredibly proud of you. You're always going to be a good person; you're kind and thoughtful and nothing is ever going to take that away from you. Let's build some fun memories today if we can.

My doctor told me that people with dementia often remember things very clearly from when they were very young so I would try to lead him gently into telling me stories from his childhood. I would get to hear stories from his grade school, or high school, or the day he joined the Army. It made him feel better that those memories were so sharp and clear. I think it gave him a little sense of control in a scary situation.

On bad days the doctor told me to use his childhood name because it would feel so familiar to him. So Jimmy it was, those days. I would put on old music - they can usually remember all the words. Or I would make a dinner that he was very familiar with. Meatloaf was a huge comfort on a day when things felt scrambled.

I would never lie, I just tried to emphasize the memories that were clear. Even putting out an old brand of aftershave or perfume can bring a sense of calm because sense memory stays strong.

I hope that this helps.
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When my Mom would ask "what's wrong with me?" I would ask her "Why do you ask?" or "What are you feeling?" or "What do You feel is different about yourself?" I would try my best to get her to verbalize what changes she felt, perceived, or thought were happening. Often these answers surprised me, and would allow me to provide additional insight to her caregivers and doctors.

I am registered nurse, and so is my mother. Even though we both were trained with the medical knowledge to understand an explanation of dementia, I know she is no longer able to comprehend this explanation...much less how it applies to her.

No matter what she asked, I always did provide her reassurance that I would be there for her, get her any help she needed, and always love her. Everyone has to navigate this pervasive challenge differently depending on their loved one's level of anxiety and level of impairment. Sometimes just holding Mom's hand and telling her "I'm not sure what's wrong, but I promise we will figure this out together" is all she needed to relax, and let go of the troubling thoughts she was having at that moment.
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I think that no matter what answer you provide, you'll likely have to repeat it over and over, because, she'll forget. And, no answer may really satisfy her. Most of the people that I know who have dementia are not cognitively able to process that they have dementia. AND, if they do, they forget it. So, it's a matter of continually reminding them. That's awfully tough on a person and I chose not to go that route.

With my LO, even though her doctor and neurologist told her that she had dementia, she would forget and ask about her confusion, memory, poor balance, etc. I focused on the positive, so, I'd say that her memory was poor, but, we were working on that with vitamins, medication, proper nutrition, physical therapy, doctor's care, etc. With her incontinence, I said that no one has a perfect bladder. This made her feel positive about her condition and gave her comfort. Of course, eventually, she didn't realize that there was anything wrong with her and she never asked questions about her condition again.
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disgustedtoo May 2019
Wow - way to work the replies! It is difficult when the person does realize something is wrong, but even if they understand what you tell them, they don't always retain that info...hence the need to repeat...

Although I don't personally know a lot of people who have dementia, I do interact sometimes with other residents in mom's place. So far I haven't witnessed any one of them acknowledging they have an issue. In my comment to another post, I mentioned our mother - she chalked being forgetful as OK, because she's old and entitled to forget sometimes! As we all know, sometimes = most of the time, and can recur in a matter of minutes!!! That was her stance and we just don't go there.
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One of the worst things is to 'reassure' them that there's nothing wrong. She knows there's something wrong, she knows her mind used to work better, she misses her misplaced competence -- so telling her she's 'fine' just makes her distrust you and feel that you don't (or won't) understand her.

Acknowledging that this is hard can help. Don't pretend that it's just normal aging, though -- she knows her friends weren't having this much trouble, and she knows that most of them don't come around anymore. She may even have a glimmer of the things she did or didn't do that made many relationships fall away. If those around her pretend that everything's fine, it just adds to her frustration.

Validating her perceptions -- "I know it's frustrating for you when you can't find something" -- and letting her know you're here to help, or watch over her, or keep her out of trouble, or whatever the present concern is -- those are the things that are must helpful.

And then, change the subject in a direct and fairly radical way. Put on some music from her youth, or take her into another room as if something sudden, and normal, is causing the move. "I just heard the dryer stop, would you help me fold the laundry?" or "We're out of milk, will you come to the store with me?" can completely distract her from whatever was upsetting her in the moment.

If there's another person available, the fastest way to interrupt the pattern of her upset is for another person to come by and start a different conversation, because she probably will quickly lose the thread of what she was talking about with you.

So -- help her keep calm by helping her get out of her emotional upset, but don't pretend this isn't happening. She doesn't need the bigs words or a long explanation, but she knows something is wrong.
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