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

I told my mom in the beginning that she had a severe memory problem because when she couldn't remember she would ask"why am I so stupid" I thought it would help to know it wasn't her fault, but she didn't understand that. Now she thinks she is dangerous to others and should be locked up.

SClck, I don't mention dementia to my mother. She will not accept that she has it and ignores any mention of it. I don't know if it may be because she doesn't want others to think anything is wrong with her. It was so strange this afternoon. We were talking about someone who had dementia and she said, "I hope I never get that." My mother is in an advanced stage of vascular dementia, but in denial that anything is wrong with her mind. She'll yell, "I'm not crazy" if anyone acts otherwise. So I never mention the D word about her. It's on all her medical printouts, but she never acknowledges seeing it. The closest she comes is when she says, "I'm starting to have some trouble with my memory." She has been saying that for 7 years now.

I don't think it's really important that she understand she has dementia, so I don't mention it. It wouldn't change the outcome even if it made it a bit easier on me if she understood.

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...

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.

About being cold-----I really do agree with the idea that it is circulation. My mom also has a sweater on all the time and wears flannel night gowns at night-----Just make sure that she doesn't have a runny nose or swollen ankles that (I am told) is a sign of congestive heartfailure) I am bringing my mom's long sleeve winter tops and long pants to the nursing home this week because she is complaiining about being cold even with the sweaters on! Good Luck---and PS I haven't told my mom that she has dementia and she thinks she is in rehab because they call it Health Care there (which I make sure everyone uses that term)----She thinks she is going back to her apt sometime and I am not telling her that she is but I am also not telling her she isn't---

My sister and I along with my brother and father have decided NOT to tell my mom she had Dementia (84 years old) For the most part we are happy with this decision She seems to be happy, She has good days and then bad days. But now her and my dad fight alot of the time. She doesnt want to take her pills which scares my dad. She is suspicious of alot of things, espeically with him (they have been married for 60 years) She doesnt want to be with her friends.. we realize after talking to her and trying to make out what she is conveying to us, it seems like she is gets lost in conversation, which makes her feel old. My mom has dementia due to a stroke. Which she doesnt believe happened to her. She has no memory from the day she went into the hospital. No memories of it at all. And she always ask what happened to her when she is having a bad day ( becasue she said she doesn't feel like herself.. ) So we tell her she has short term memory loss due to the stroke we never use the word Dementia (we are afraid she may give up and we dont want that to happen) But she blames my dad for everything... but in turn he is trying to take care of her and protect her. I did try to get help for them but they both refuse it. I was able to hire someone who prepares dinner meals for them. Which helps out alot. Since my mom has forgotten how to cook or she seems to get side track when she tries.
The Dr,. wants her to go to Silver Sneaker (senoir excerise class) which she gives me every excuse not to go. She spends everyday laying on the couch in front of the TV set. I also think that telling her will only upset her. We also noticed she has Dementia she is always cold. It is the summer now and she is wearing a warm jacket in the house and the temperture is reading 81 degress in the house. It is hard for me to visit (which I do anyway) because it is so hot. Dr. said its lack of cirulaltion... but I think it has something to do with the Dementia. Is everyone else finding that as well?

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?

Treading water that is what I do with my Mom,I tell her Mom I forget as well. I also will ask her to remind me of things, it helps her feel like she is not alone. I try to make it as normal as possible for her even if it isn't.

On another note I wish to "THANK" everyone who answered my ? did you tell your parent they had dementia or not. I am and always will be interested in all the feedback!

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---------

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.

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!

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. :)

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...

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!

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 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.

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 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."

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.

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.

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

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.

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.

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.

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.

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 :)

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.

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.

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.

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.