Did you tell your parent they had dementia, and why? Or if not, why?

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Did you tell your parent they had dementia, and why? Or if not, why?

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I just want folks opinion.

Alzheimer's & Dementia Anosognosia

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Hi Lrock,
When my Mother asks questions about being confused or not remembering something fairly recent, and she gets upset about it, sometimes I will say, "That's the dementia, Mother." Last time, however, she freaked out and put her hands over her ears and cried, "Ooooh, don't tell me there's something WRONG with me"!
I felt terrible that I had said it. After that, I don't think I will tell her again. It's gets a bit redundant and really, it seems kind of cruel to tell them since they are already confused.
I had read on another thread that this person used to tell her Mom that she had dementia, and she had a lot more experience than I at the time, so I thought it was OK. Now, I don't think so. Even if they don't or can't respond, how do we know where that comment is going in their brain? Better left unsaid. Only WE need to know they have dementia. They will forget!
As their reality changes, our treatment of their behavior has to change, too. Our perceptions are the same, but we are watching a constantly changing picture, and must adapt accordingly. Good luck. You will get lots of answers. Weigh them all for validity, follow your instinct, and you will be fine. Hugs, Christina

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Hey there Lrock,
Everybody's dementia is different. What works for one may not work for another. I told my mom she had dementia because she was a no bs type of lady and so I said do you want the truth or do you want me to just act like nothing is wrong? And she chose the truth so I told her as gently and directly as I could.
It worked for my mom because she knew something was wrong and it was a relief for her to finally have an answer as opposed to thinking she was crazy. I told her that I would keep her safe and sound and that she didn't have to worry or be scared.
As she progressed through the disease and would experience the different symptoms that are disturbing or frightening, I would say: Aw mom, don't worry, that's just the dementia talking. don't pay it any mind. It was an obvious comfort to her and I told her every day that I thought she was the bravest person I'd ever met because she faced this terrible disease with grace and as much humor as she could muster.
My mom had the kind of dementia where she had long lucid moments and then she would fade away for awhile. It was the saddest thing I have ever witnessed and of course it was so sad for mom.
Like I said, everyone's dementia is different and the truth worked for her but might not work for you and your situation.
Could you tell us more about your parent and what symptoms they are presenting? If you are comfortable with that... one way or the other we all understand.
Please keep coming back to this site for the support you will need because you will find the most loving and caring people here like the ones above who have answered your question.

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My sisters and I didn't tell our mom that she had dementia - for some of the time we weren't even sure ourselves!! When she forgot something and said she was getting so forgetful we just said that anyone past 95 years of age probably couldn't remember everything. Mom was not the type of person who liked to admit that anything was going wrong - she kept her diabetes a secret from even her closest friends for years. Because Mom had always been so clever, she would have been SO disappointed to learn that in the end, her brain was failing her. She didn't ask what was wrong and we didn't think anything would be gained by telling her. But, as others have written, not everyone is the same so I would say " Just do what you believe is the most LOVING thing to do for your mom " and don't get uptight yourself about your mom having dementia. You will need all your energy just to "go with the flow".

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From all of these fascinating postings, I think the really important answer is, "It depends." How's that for decisive? :)

My mother's main coping mechanism all her life has been denial. It has servd her well and she can't be expected to give it up in her nineties. All of her kids respect that and her doctor does too. She has mild cognitive impairment now, but I can't see what the benefit would be in putting this to her bluntly. She still lives alone in her little senior apartment and we arrange more and more services for her and keep a close watch on her. On the other hand, my husband, now 85, has Lewy Body Dementia for 8 years and has known from the beginning. He is still in early stage with mild symptoms. We personify the disease and I can say, yes dear, I know that you can do that by yourself and you've done it well for many years. But Lewy can't be trusted to let you do it now, so how about if I help you? It is Lewy, not me, that won't let him drive. And fairly often when he remembers something I've forgotten I say, "Tell me again, because I forget -- which one of us has dementia?" I can't imagine giving my mother a name for her condition, and I cannot imagine living with my husband without his knowing all he can about his condition. Different strokes for different folks, eh?

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I have not told my mom because she doesn't believe anything I say that she doesn't want to anyway, and turns it around onto me. She accepted that my dad had dementia and had no problem talking about that and understanding that that was the reason for a lot of his behavior. She will put her memory up against mine anyday, even tho' I am taking care of virtually everything for her, such as bills, finances, mail, etc. She does not remember that my dad died, being at his viewing, funeral, wake or burial, and so she thinks that the family kept it from her. We can tell her 'til we're blue in the face that she was there for everything, but she just can't recall it. She thinks we're lying and that there is nothing wrong with her...we're just bad kids. So, for me, it's "what's the point"? She has no insight and wouldn't believe it and wouldn't recall the conversation after 5 minutes anyway.

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I also made the decision not to tell my Mom about the neurologist's diagnosis of pre-alzheimers. Mom's best friend had alzheimers, and my Mom helped her husband with her care, until she eventually had to go into a lock-down care center. That was a decision the friend's husband made, and it was terrible for my Mom to go visit her friend, and the friend begged to go home with my Mom. After going through that experience, when years later, my Mom's memory began failing, and her primary Dr. sent her to the neurologist. When they called for a follow-up visit from the neurologist's office, I asked if the Dr. had determined that Mom had dementia or alzheimers, and when the assistant said YES, I cancelled the follow-up appointment. I knew my Mom would never want to hear such a diagnosis.
I handle her memory problems, etc. like all of the responses above: with kindness, patience, understanding, and love. No one needs to hear those words: dementia or alzheimers. I really believe Mom knows it, but prefers not to give it a label. She'd rather call it fuzzy-headed, and forgetful, and we frequently have good laughs about it.
Good luck, and blessings to you Lrock, in the journey ahead w/ both your Mom and your husband!

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what does telling your parent they have dementia or whatever, help? I suggest you go along everyday and tell her h ow much you love her, not how sick she might be. It will not help her in the long run. Be patient, loving and kind.
when she is gone, you will not ever feel you did not treat her as she deserved. Believe me, that is a comforting feeling for yourself.

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I also say NO, why do that to them? Did you ever feel happy or sad and you had to take a second to think "why" and then you remember.
Well if you tell them, they will feel SAD for a long time but wont remember why. Just my opinion. I sometimes have told my Mom she is a little forgetful just like me and what she forgets I remember and when I forget she remembers. She loves it thinking she is normal, so I let her, just like she also thinks her husband is on the way home, etc. Before she was too advanced in her dementia/alz and she would forget something, I would say "oh I forget things too!!!" she would always say " oh phew, you made me feel so good."

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I think the advice you have recieved is good. My Mother has some memory issues and that is what we call it. Sometimes she is pretty good and other times she is not so good. We just try very hard to be patient and loving. She does not need to be humiliated, none of us do. I try very hard to be honest with her, but kind and respectful. My Father passed away in July and we found out quickly how much he had been covering up for her. I would just encourage you to use your instincts and be kind and patient. Realize it will make her sad and maybe even scared but reassure her you are there for her. My Mom says what would I do without you and I reply don't worry honey you are stuck with me. take care...

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I found this post tonight, praying for an answer on how to work with my Mother. Her doctor phoned me last year and said she had been asking my Mother for my phone number for 2 years to let me know that she was in her 3rd year of dementia. I finally "got it" when, every time I called my Mother she was frustrated with all the mail that was coming in. Because I own a retail business (it really owns me) I called my Mother twice a day and went out on my days off as often as possible. But I didn't really know until I went out, only a few months after seeing her and taking her out for Mothers Day, that something was not right. All of her bills were past due and she had tried to hide all of them in individual brown sandwich bags in a guest room. I took over immediately and forwarded all her mail to me so I could pay them and get them on an auto-pay for her. I have been telling her that if she would not deny she had dementia ( her Dr. said she was in the 3rd phase), I could help her so much with what to not eat and supplements to make her memory loss not be every single day so bad. I am so grateful for having found this place tonight. Every time I tell her she has dementia and I want to help her so much because I love her, she raises her voice and says "I do not have anything wrong with me!". I read all 35 answers. I will do as so many of you have, so she does not feel angry or scared as she ages. Thank you all so much for your sharing...

Did you tell your parent they had dementia, and why? Or if not, why?

38 Answers

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