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

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

We have "reminded" grandma often that she has memory problems but she forgets. I don't mean that to be funny.

At the beginning of her dementia, we tried to explain it and her doctor tried to explain it, but in the end it really doesn't matter. If she understood it in the beginning, that understanding is now also lost.

We don't bring it up anymore. Sharing this with her causes her to react with either sadness or anger and we'd rather avoid both. So we operate as well as we can with repeating ourselves constantly, leaving notes on white boards about where we are in the house, and trying to remain sane ourselves.

Hope it helps. Goodluck and hugs.
HB

I think most people know when they have dementia-it must be very hard for them to realize that it is happening to them-the best thing you can do is to take them to their primary MD so they can get on meds as early as possible and you yourself learn as much as you can about and if possible join a neuro support group and this site is very important there are many threads here where you can join discussions so you are not alone and get support and assistance from others and where you can vent as needed so you do not feel alone because this disease will affect you greatly often even more than the person with dementia-I remember a doctor increased a med I was on even though I said the dose I was on made me spacy and after taking the stronger dose I got lost going home from church twice and let me tell you it was scary for me.

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.

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".

My mom's neurologist told her.

Nope she would not have understood anyways...kinda of explained it in another way but not the terms dementia or alzheimers.

When my mother-in-law asks why she has such a terrible memory, I just tell her that she still has all the information in her brain, but she can't access it anymore. No sense telling her she has the beginning of alzheimer's she wouldn't remember that anyway.

First I want to thank everyone for their quick response to my question. Let me tell you a little about my Mom. I knew something was up 3 years back with Mom. She used to love to read ,do crossword puzzles you name it. Mom lived on her own in a senior housing for 20 years. My Dad died very young at 46 so Mom was on her own for a long time. She lived about 45 minutes from me near my brother. This is another story let's just say he took himself out of the picture several years ago. He was never one to face responsibility . Getting back to Mom. I noticed she starting to act so differently ,she would become paranoid over little things. She stopped reading,watching TV and many other things she used to do. I began to pay her bills for her,take her on all her doctors appointments. As far as her health then she had border line high blood pressure,she also has essential tremors she was taking meds for. I did get her to see a neurologist finally! Her regular doctor whom I didn't care for wouldn't recommend a neurologist he was going to take care of my Mom's tremors his way. I had noticed her meds weren't working well and she was getting worse so that is why I made a stink and demanded he recommend a neurologist. This doctor was wonderful he was the ONLY doctor to ask me at the time, if my Mom had dementia other wise it was dismissed by others. Let us just say Mom ended up in the hospital many times for one thing or another mostly UTI. I also noticed she wasn't caring for herself the way she used to like bathing,eating and so on. I kept her independent as long as I could which was 3 years. Since then she had other medical things that required 24 hours care which I couldn't provide. As I said my brother stopped talking to her and me and left me to take care of it all. I was able to get Mom down here to a rehab center our family doctor was head of and from there it was determined Mom needed special care. She also has congestive heart failure and lung problems. She is still able to get around with a walker. I visit her in the home several times a day and take her here for visits. Getting back to her dementia the signs as I said were there 3 years back and just recently have become worse. She repeats things,she thinks folks are against her in the home at times. she gets depressed. She has good days/bad days. She always asked me why she can't remember things. I just say lots of folks have the same problem. One thing though I was able to get her to do word search games to keep her brain somewhat active. I thank-you all again for your input. As far as me I had thought it best not to tell Mom because it would scare her and would serve no person. I was just wondering if that was the right thing to do.

I think it depends on the person and what use the information is, and your 'delivery' of it. If you are answering their own question and you think they really want to know, then maybe. However, you don't want it to hang over their head each and every day, and tell them every problem they have. You don't want to brow beat them. "You have dementia and I don't" kind of thing. As things progress thay do not need to be reminded of it. It is better to reassure them that you are there for them and will help them navigate their daily needs.

Dear Lrock - It sounds to me like you are handling everything beautifully. Your mom is lucky to have you tending to her needs. May you sense some sort of a reward each day.

My wife cried and was disturbed when a Dr suggested she might have AD - she has said many times over the years she didn't want to know if something was seriously wrong - so we have NEVER DISCUSSED this and she is in late stage now.

With us, Mom knows that she has 'memory problems' as she calls it. She does not really know to what extent and some days are better than others, and we've certainly seen our share of what appears to be a bit of selective memory issues :) ... The only time we actually bring it up is if we are confronting an issue that really needs some kind of effort on her behalf, such as needing at times to post reminders about something that we need her to either do or not do (such as leave the back door open -- "Mom, please close the back door" posted at eye level at the door. If she challenges us over these kinds of things we gently as possible remind her that it will be help to her 'just in case' she forgets, usually she'll respond with something like, "yeah my memory isn't so good anymore". We've never used the word Dementia with her, even at her lowest functioning points we know what it is and just find ways to cope and where possible get her contribution :)

I agree with the 'go with the flow' attitude. It is always about making your loved one feel loved and secure. You have to find the groove that works for you and your patient. I believe that the last thing caregivers should do is upset their patient, because it is unproductive and just plain sad to keep reminding them.

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.

Hey Lrock,
For me when they told me that my mom had dementia, I was not sure what to do. So when she started to forgot a lot and started saying that she was just going crazy then I told her, but she acted liked she did not know what dementia was. I tried to explain it to her but she just did not get it. Then I would tell her you are not crazy that we all forget stuff some people more than others, And for some reason evertime you go to the hospital it just makes you worst. Then in the middle and late stages I would just tell her you are not crazy.

The doctor told me in front of my mom .... "Your Mom has Dementia/Alzheimers." And then proceeded to tell me what drugs are effective. Mom had tears in her eyes, and he noticed it, so he said, "Mrs ...., it's not all bad losing your memory. The things that most people worry about, you just forget about them, so you do not have a thing to worry about, right? And, that's a good thing." I wondered why he would give her diagnosis like that, but I guess he figured she would forget about it by the time she left the office, which she did. I have never mentioned it to her again.

Thank you, Lrock, for telling your story about your Mom.
So many things you describe are the same with my Mother. It is wonderful that you are able to care for her now. A lot of us know about the unavailable siblings. She is fortunate to be able to see and do the Word Search puzzles. My Mother did crossword puzzles until she could not see.
I hope you are taking care of yourself--visiting Mom several times a day doesn't leave you much time. Take care:)
Hugs,
Christina

Christina you bought tears to my eyes. What I didn't add was I found out a few months ago, my husband has Parkinson Disease and he could get Dementia as well. Thanks to everyone who has answered my question.

In the beginning, my mother got angry if we mentioned the A or D word. Later, when she couldn't remember a word, or a name and say, I don't know what's wrong with me, I would say, that's okay mom, your brain is playing tricks on you. She accepted that, and then would forget it right away.

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."

I haven't told my mom that she has dementia.....She makes excuses every time she forgets something which I think is her way of coping. When she repeats herself 15 times in a conversation I just don't respond or nod my head. She has never been one to accept anything she does not want to hear, so for her this works right now.
I don't know what will happen in the future but for now just agreeing with her calms her down.
I agree with the above comments that you have to determine what works well with your parent's personality. It seems to be an individual decision. I know it is hard but in my humble opinion I would try other alternative terms before you use the word "dementia" because of the negative connotation older people may have of that particular word.
Good luck to you and know that you are only trying to do what is best and that is all you can do

I made a decision long ago not to tell mom she had Alzheimer's. What purpose would it serve? It would only serve to add to her anxiety and agitation. When she asks why she can't remember everyday things, I tell her that it is not unusual for older people to develop memory problems just like they develop hearing, walking and other physical impairments. She accepts and is comforted by this explanation. It took me quite a while to learn that full disclosure and transparency with a loved one living with dementia may not be an act of kindness and may not serve their best interests.

Lrock, I am so sorry that your husband has been diagnosed with Parkinson's. Enough already - right??? I hope you can get help with all that you are handling. I'll be sending you a bouquet.

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!

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...

In an attempt to help me, my brother told my mother that she has dementia when she was on a rant about me...I am the primary caregiver and he lives 7 hours away. My mother was greatly distressed about her memory loss at that point - and that news just added to her panic.

Whether the meds are helping calm her or her dementia does not allow her to remember that she has memory problems - which frightened her, things have changed recently. One of her granddaughters came to visit and she had no memory of her, but she wasn't frustrated by not knowing her. A year ago that could have caused a psychotic episode.

Evidently if a person lives with dementia long enough, they will forget they have it. Of course then they think YOU are an idiot. :)

Elisabethgrace, thats too bad what your sibling did. Mine did something similar, not about her memory but told her she did something wrong in life. To this day my Mom still tries to express the words she is sorry she did something wrong and starts to cry. This stayed in her mind and is smoldering there, I hate my sibling for what was said. Poor Mom, so innocent and has to deal with dementia and stress? not right!

You know, luvmom, in his defense, my brother was trying to defend me to my mother. She was absolutely smothering me at that point and was continuously furious with me because she couldn't remember how much interaction we really did have. She was telling anyone who would listen how I was not taking care of her. He didn't say it to her unkindly, just matter-of fact - told her she couldn't remember everything and when she asked why, he told her. She didn't remember a few hours later. But we never use the "D" word now. She really does just think we're idiots most of the time now. On (my) good days, I just let it go.

My mom, too, dealt with a lot of guilt, but we have no idea what it was about. A horribly strict cult-like religion in her childhood probably made many things seem unforgivable in her years of mental illness prior to dementia. The good news on the dementia -, she has completely forgotten whatever grieved her, has completely forgotten my father, his anger and their difficult marriage and now, for the most part, has forgotten that she can't remember.

On her good days, she lives for bingo, what she's going to wear tomorrow, accessorizing her outfits and her cat. She doesn't long for grandchildren to call, because she can't remember them. She remembers that I am the go-to person and will call me to solve all her problems. Other than me, no one else exists.

I too am the go to person and my mom has forgotten almost everyone else.
I haven't told her that she has dementia but am at a point now with her that I must tell her something because she is starting to realize that she is forgetting everything and is getting panicky.......I've decided to console her and just tell her that she is getting older just like me and as we get older we forget things more frequently.......I'll fake a few examples with my memory and hope she gets the point--------wish me luck---------