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Sibling5 Asked July 2016

Is it wrong to tell my Mother who's had dementia symptoms for 3 years that she has dementia?

My mother is 93 years old and told my sister that she was going crazy, that she can't explain things, she can't remember things. My sister told her she had dementia, that's why she couldn't remember things, but we, her children, were going to take care of her. Is it wrong to tell here she has dementia?

micalost Jul 2016
My mother never asked "why" she would just state she had a bad memory and i would agree that i did too and we would giggle together about it-- she didnt feel so alone then... Yes , as the months went by and she could no longer express what was going on, I would sit and listen to her as long as she needed, agreeing with her that it was hard and yes, lets try this or that vitamin.
Yes Sibling5 it is the most hard thing I have done, watching someone who became my friend losing parts of her self bit by bit..

Countrymouse Jul 2016
"Why can't I remember anything?"
"You have a memory problem."

Not tremendously helpful.

If you don't like the word "dementia" - personally, I blame J K Rowling - then by all means put it a different, gentler way. It doesn't have to be a label, as such. You could explain that there are protein plaques causing her to have difficulties with thinking and memory, or that the blood supply to her brain needs to be improved, or whatever. But if she's asking you to explain, then explain. Telling her she has a memory problem doesn't explain anything.

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Sibling5 Jul 2016
I think saying "memory problem" is better that telling her "dementia". She knows enough I think to be very confused why she can't remember or express herself. It's so sad to watch such a loving, caring individual just fade away.

micalost Jul 2016
I told my mom she had a "memory problem" and to take her 'memory pill' and we would go see the 'memory doctor'. When she would realize (back then) she wasnt herself (waking up not knowing who she was), I would just rub her and hold her and reassure her- just like you would do with anyone with a chronic disease. Other times when she would remark about her memory, I would reply my memory was awful too...

Jinx4740 Jul 2016
I have told my husband twice that he has dementia. He let me know in advance that he wouldn't want to know if he did. But once he was asking me if he was going to die, and I reassured him that he didn't have cancer, but alz, and would live for another 15 to 20 years. That's not a lie, because some people do live for decades after diagnosis.

One other time I told him his diagnosis. I needed him to understand that he couldn't drive, and a mean part of me wanted to win an argument. He remembered it for about 18 hours. After forgetting, he was still angry and sad for three more days. Then he forgot completely, and cheered up.

So I won't ever tell him again. I call it memory problems, and he accepts that. He realizes that it's true. Then the next day he will talk about going back to work as a software engineer. Sigh. A lot of my conversation consists of saying, "Uh huh." Agree with everything you can, true or false. That's hard for me, but I'm getting better at it.

ohmeowzer Jul 2016
Oh heavens she has a caregiver while I'm at work

ohmeowzer Jul 2016
Sorry about the typos ..I'm cooking supper and answering

ohmeowzer Jul 2016
My mom is a retired nurse and she told me 3 years ago , I think I have dementia.....the. As time went on she forgot she had it , her neuro added alzehemiers now her short term memory is gone ,and she is declining...but she is a fabulous person , I am a RN and take. Good care of her just not sure of when to start hospice.... I do all the. Cleaning everything .. She is all I have left since my sister died 3 years ago ... I am sick but still work she has a caregiver... I send you all hugs and love and hope you can get your problems solved. I love you all...

jeannegibbs Jul 2016
It sounds like Mother wanted to know -- wanted an explanation other than "I am going crazy." I think Sister handled it just right.

For people to whom "dementia" is too alarming, calling it a "memory disorder" may be better. Mom, you are certainly not going crazy! You just have a memory disorder. The doctor is aware of it, and we are all working to help you and keep you safe etc. etc.

If someone doesn't ask and in fact doesn't seem to know anything is wrong, then an explanation may serve no purpose.

Sunnygirl1 Jul 2016
It's always a tough thing to determine, but, there are varying ways to handle it. Some people explain that there are memory problems and that they will work on getting her as healthy as possible, take care of her, etc. pursuant to doctor's orders. I found that that explanation didn't seem to alarm my cousin. There was no need to frighten her. The neurologist later told her that she had dementia, but by that time, I'm not sure she full understood what it meant.

I think the issue is that no matter what you say, it's going to be forgotten, then you have to repeat it, so it may distress the person to give them this news over and over. I don't see the need to do that, so I would try to put a less negative spin on it.

I think it's important to have full knowledge if you are still at the stage to process it, make plans for your care, sign Power of Attorney, Wills, etc., but if those things are done and you aren't functioning well, I'm not sure I see how it helps the patient.

Countrymouse Jul 2016
No. Your sister has given your mother a) an explanation of what is happening to her and b) reassurance that she is not going crazy and that you will all take care of her. Full marks to your sister.

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