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Mom is in one of those lucid times, which don’t happen very often, but when they do I spiral. I know that sounds awful, but it puts me so on edge, and I feel guilty for moving her into AL ... even though I know it is the best thing.


I spoke to a friend of mom’s the other day, and my step-sister yesterday, and mom is (very clearly, like she is as clear as we all are) telling everyone that she should be better and be home by November. 😦


When she isn’t clear, we go places like the casino and restaurants on the water, which she thoroughly enjoys. However, last night I told her that maybe we would go out on the island for lunch this weekend, and she very sharply said, ‘Yeah, whatever,” so I know she is going to tell me this weekend that she’s going back home. 😕


If she is still very lucid this weekend and does bring it up, I am thinking of telling her about the dementia and how we are going through this together. I know I have brought this sort of a situation up here before, but I don’t really have anyone to talk to about this. When I tell hubby about this recent situation, he is able to just laugh it off and say it will pass ... whereas I get so stressed out, I feel like I’m having constant panic attacks. 😞


As I’ve said before, I don’t tell her she has dementia, because I don’t want her to feel scared ... but I also know that I am so extremely stressed when she isn’t happy on why she can’t go back home. I’m thinking that if she seems very clear tomorrow, that it’s time I just shoot straight with her, so maybe she will understand and not get so mad about things.


Sorry for rambling. I’ve just been so stressed the last few days and needed to get it out of me. ❤️

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I don't think she's going to 'get it' even if you DO shoot straight with her, frankly. When they want to go home, or do whatever it is they want to do, they want to do it, period, whether it's the right or the wrong decision for them. You know what I mean? Lots of elders live in Assisted Living *my mother included* and it's a good thing for them. I read a comment from someone here on the forum today, and it was one of THE best comments I've ever read. She said that her mother lives in AL because they BOTH need a life; mother needs her friends and her social circle, and daughter needs HER friends, etc. And mother needs someone outside of her family to help her with toileting and showers, and she gets that very thing in AL. So true, isn't it?

Your mother may think she's going home in "November", so let her think it. When November rolls around, you can let her know she'll go home when her doctor thinks it's a good idea to do so. Or some other comment that seems appropriate at the time. She's taken care of where she is and BOTH of you are thriving. There is no need for you to be panicking either.......old age is tough. We don't always get what we want, but if we're very lucky, we get to live in a nice place AND have family members, such as our devoted daughters, looking out for us and taking us to casinos, and restaurants, and out to the island for lunch.

You're a wonderful daughter and your mother is lucky to have you.
Keep up the great work!
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NekkidFish Sep 2019
Your response brought tears to my eyes. Thank you so much for your calm and logical comments. I’m going to print this out and read it to myself when I get panicky. Thank you and have a wonderful weekend! ❤️
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Bless your heart. Nekkidfishes comment was very wise and so right. praying for you hun and keep me in your prayers as I too am caring for my aging mama that's battling dementia and other health issues.
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It might help you feel better to get it off your chest and tell her she has dementia. But, be prepared for her to argue with you, defend herself, get agitated, and be even more difficult. It’s called denial, but hard to predict if this will happen in your case. In the end, it almost doesn’t matter if she accepts the diagnosis or not. It is what it is.
I tried for the longest time to try and have my mom understand what was happening and her dementia diagnosis, but gave up. Finally, a neurologist and psychologist team told her that she had dementia, Alzheimer’s disease, and she seems to have accepted their diagnosis, for now. There will be a time where she will forget the evaluation and their diagnosis.
Thank goodness for hubby’s....and this too will pass is absolutely right. In November, it could easily be something else, so just go along the best way you can right now, use fibs, and perhaps back off from visiting as frequently right now. Take care of yourself!
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I know this is so very difficult. I really don't think that there is any right or wrong answer.

My step-mother has dementia, not sure exactly where she fits on the scale, but there are times when she is more lucid. When those times come around, we discuss her issue. Several years ago, I told her she had dementia, it did help her as when she is with the program she will ask me "Do you think I am doing better", I will respond in kindness, she is relieved.

She once said to me "You are my angel, I know that you will take care of me, I am no longer afraid".

So for her, it was the right thing to do. My very best!
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Consider why you think you should tell her.

Consider whether you would want to be told if you were in her position.

Consider how and whether she herself will benefit/use whatever information, if any, you decide to share.

Consider the aspects of her present condition that would change if more information than she already has were presented to her.

My LO KNEW, not from me, and became more and more anxious from her intermittent awareness, and worked frantically to keep those of us whom she loved from knowing her “secret”, with increasingly sad results.

Your mom may have some ideas about home, or just a sense of longing that there was a place once that she loved, and she isn’t there. But talking to her about the “whys” of her being where she is now isn’t likely to stop her longing.

I remind myself constantly that I am my LO’s source of peace, care, safety, and comfort. “Truth”? In my opinion, for an LO with dementia, overrated.
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Why do you feel the need to tell her?  It won't change the fact that she has dementia and it won't change the fact that she needs to be in assisted living and eventually memory care.  I think you're taking these little snippets of her remembering something from her past and thinking she is "back" and is going to judge you for the decisions you've made about her care ....when in fact she isn't back.  Your husband is correct...it will pass.  Enjoy her moment of clarity and know that you have made these decisions for a reason and the reason is she has dementia.

I know it is hard but you will get to a point when you realize that the mom you knew is no longer there and you no longer have to keep looking for her approval.  You are doing exactly what you need to do and that is making sure she is safe and taken care of.  :-)
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I don’t think there is anything to be gained by trying to explain to someone with dementia that they have dementia.
They may understand for a bit but you’d be explaining again the next day or maybe an hour later. Plus it could hurt feelings, cause anger and so on. Just not worth it.

My fathers dementia has slowly worsen over the last 9 years. He would never agree to any testing. So I just rolled with it, learned how to placate and divert him. I have reminded him through the years that his memory is not very good these days. He’s not bothered by that. He has zero short term memory.

The other question that that comes up here is whether or not to tell a dementia person that a spouse has died. Same issue. It won’t be retained. I’d have to force my dad to re live his grief over moms death every 15 minutes. Absolutely no point in doing this. I avoid the subject and if he asks about mom, Oh, she’s down in therapy. We’ll go see her later.
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Daisy9 Sep 2019
In a nursing home setting with many Alzheimer residents we told the surviving spouse once that the other had died to allow them to grieve. Later we would give diverting answers or the little white lie, e.g., "in the therapy room", etc.
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I recommend the book "Still Alice" for you. It's about a college professor with beginning and progressive Alzheimer's. She knows something is wrong (keeps ending up.in odd places, forgetting important things, etc.) and how her family deals with it.
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LarkInTN Sep 2019
Such a wonderful book!
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We never mentioned "Alzheimer" to my MIL (about mid way through her journey), but upon being presented with a new med my husband told her it was for her memory. She acted surprised and said "I don't have a problem with my memory!" DH said "Yes, you do". She was still with it enough to read the probable side effects and claimed "itching" as a reason not to take the medicine. Lesson learned: never let the person know there are possible side effects or allow them to see the med info sheet.
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disgustedtoo Sep 2019
Same here, we don't use the D word (although clearly memory issues, most likely vascular not ALZ, no actual Dx, but no real difference, eh?) She has always equated dementia as meaning "off your rocker", aka crazy, so we don't bring it up.

The memory loss - funny your MIL says she doesn't have a problem! Most will say that. Our mother did, at one point, say she did sometimes forget things, but followed that with saying she was entitled to forget because she's old!!! HAHAHAHAHAHA! Sure mom. Forgetting things does happen for all of us as we age, but forgetting you just said/asked something 5 times in the last few minutes? Nope. Thinking you already took your meds, but haven't for days?

Funny too how she "takes on" the side effect and then uses it to refuse the medication! I forget which thread it was, but I was amused by one person's account about mom "pretending" to dust & clean while searching for the hidden car keys! So many behaviors with cognitive decline are difficult to deal with and disheartening, but this one was just soooo cute! I could just picture her mom dusting along...
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Have you thought of talking to her doctor about this and let him advise her in front of you? Then in the days ahead you can always say, "It is what the doctor advises for you". That statement works with my husband.
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I agree with the folks who are advising do not tell her. Nothing to be gained. I know all too well, the good days are actually the bad days. Instead of being able to enjoy the lucidity, our loved ones are full of difficult questions on these days. Just give them a "sugar coated" version of the truth, that they are there because they need a little help, you want them to be safe and not alone, but don't feel that you have to give them a grim diagnosis and start throwing around medical terms. That may scare her and put her into a deep depression. In time she will settle in where she is. I never thought my mother would but she did, she seems to like the staff at her facility and she is all smiles when they come into her room. And don't feel guilty--you are doing the best you can for your mother.
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Your post reminds me of an incident from many years ago. My former brother in law (bil) has Paranoid Schizophrenia. He also was a street drugs user, would sell his meds to buy street drugs, was in and out of hospital.

When he was in the local Mental Health hospital, getting three meals a day, no street drugs, clothes laundered, proper meds administered on schedule, daily showers etc., he did very well. Does this sound like a care facility? He would be discharged to a half way house, then to live independently. Soon he would crash and it would start all over again.

It was never fun for my former mil to see her son in a mental institution, but it truly was the best place for him. Now he is in permanent care as he had a stroke in the shower at a half way house and received burns to much of his body from the hot water.

Your Mum may have her lucid periods for the same reason my former bil did well. All her needs are being taken care of and you are not doing the hands on care. There is no reason for you to feel guilty because you understand that she cannot have what she wants.

Do you have a member of clergy, therapist or other person who you can talk to in person about your feelings? Do you worry that Mum is well enough to leave and you will once again be providing all the care? You know as your husband does that this will not happen.

It has been posted here many times, but we all need to remember, we are not responsible for our parent's happiness, or any other emotion they experience. Your mother may be mad about her situation when she is lucid, but that feeling is hers alone. You did not cause her decline.

If you visit her and she is in a mood, cancel your planned outing and leave. There is no rule in life that we have to stay with someone when they are angry, unhappy or in any way taking out their bitterness on us.
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This is the MOST tricky, delicate situation I've ever been in - talking to a person who has dementia and doesn't know it. And, they know they know what they know. Period end of story. It is like a dance of communication where we (care providers) are often on a tight rope.

I would recommend you read / listen / sign up for some of TEEPA SNOW's seminars. They are the best in the country. I've been training on-line w/her for years.

One major mountain (bit) of wisdom I've learned (well, continue to learn) is to NOT argue with a person w/dementia. Do NOT set up any verbal exchanges where one is right and the other isn't. This only upsets everyone involved and may elevate blood pressure, etc. No one wins.

It is ... shockingly fascinating - to say the least - when a person with dementia 'appears' to be so lucid and as if nothing is amiss - brain functioning appears to be absolutely normal. This is part of dementia.

I had a client (brilliant world traveler/writer, several books published and the quickest wit you'd ever hear) said to me "What do you call people like me who need help from people like you?" I said "people that need some help."

Actually, while I work in this field, it is one of the most intriguing and heartfelt experiences of my life. It continues to challenge me as - no one can throw me (us) off as a person with dementia. To talk and 'try to help' a person who believes they are fine (and do not have incontinence . . . when they are peeing on everything day in and day out) is a special skill we learn as we go along. This is my experience anyway. It keeps me on my toes as no other situation does. It challenges me to be quick, sensitive, and as honest as I can be filtered through loving kindness. gena
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NekkidFish Sep 2019
Thank you so much!!!! I guess I have a lot to learn. ❤️
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Please don't tell her. I understand how confusing it can be for you. Second guessing if she really is okay and did you do the right thing and on and on.

I told my dad and was promptly told I was an effing liar, he does not have any type of mental issues or dementia. He still remembers that conversation but can't remember to take his pills. It is a no win situation and you must pick you battles wisely.

Hugs, this to shall pass.
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disgustedtoo Sep 2019
Funny, in a sad way sometimes, what DOES stick with them and what doesn't! Lucky you that he remembered THAT conversation, but probably not a lot of others, especially any loving/caring ones!

I avoided the topic - knowing my mother, I likely would've ended up being called many names as well! She would probably also remember it, unlike most other "new" tasks/things. I knew what her opinion of dementia was, long before it impacted her, so no way would I bring up the D word!

I also told my brothers I would NOT participate in the actual move. Figured I would get the blame whether I did or not, but for the most part that piece of the plan seemed to work! When previously we had taken her keys to the car, YB did ALL the talking and took the key, I just stood in the background. On the way out, I asked could he disable the car as I am sure she has another key. Sure enough, next day I get the nasty call accusing me of taking her key and to bring it back - I could *honestly* say I never touched it (and didn't even have possession of it at that time.) She asks: "Well who did then?" Reply: You're so smart, you figure it out and I hung up. Forward to day 2 - call even nastier demanding I get down there to fix whatever I did to her car. So clearly I was right - she had another key and managed to find it.

So, I made all the arrangements/plans, but did NOT go on moving day (she only went reluctantly due to a phony letter YB wrote from "Elder Services" at the hospital that treated her cellulitis, which she got just prior to move day! I also stayed away for about 2 weeks after the move. Although for the most part she doesn't think of the place as home, I can say that she has never asked me to take her home (early visit about month after move she saw me and said 'funny you showed up, when (YB) comes tonight, I'm going to have him take me home.' I'm standing right there, doesn't ask me (VERY thankful!) and when I gave YB heads up, he wasn't even going there that night! It'll be 3 years in January, and no requests for me to >take< her home (drop off at mother's or ask if I have key to previous home they had, but no asking ME to take her home!)
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What is the point of having that conversation? When she is not lucid, she's not going to remember you told her. It may frighten her or depress her to know that she has it, so why mess up the good days. Enjoy the good times with her and talk about good things, memories, all the things she loved because you are going to miss those talks when the lucid times are fewer.
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Jannner Sep 2019
I totally agree. My mother is finally on a good dose of anti anxiety medication that has helped her agitation but she still HAS dementia. She’s not going to get permanently better. If she maintains this level, hope she can enjoy it , telling her will not help her
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Isn't just maddening? I tell my mom that she has been diagnosed with dementia and moderate Alzheimer's whether she likes to hear it or not because it is true. I take her information regarding Alzheimer's research projects and any updates on the research. She is getting worse and worse, and her lucid moments are not as frequent as they used to be due to the progression of the disease, but I let her know I care by doing things for her and with her whether she is nice to me or not. My cardiologist and my neurologist can tell the stress I am under when I go to see them. They know the score.
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I want to send big thanks and hugs to all of you! I am crying as I type this, both because of how much I appreciate you all listening and reaching back to me, but also for all that you all have been through. 😢❤️

My aunt told me last night that I am way more compassionate with my mother then a lot of people are with their parents. I think that that comes from really never having much of a father figure, and my mom has always been “my person“.

At one point in my life, I remember my stepsister getting all pissy because my mom and her husband at the time had gone on two cruises that year. That made me so angry! I explained to my mom that she and her husband had worked their entire lives and if they wanted to go on a cruise every damn month, then they should do it.

I have always just wanted what is best for her, and now that that is in my hands, it does seem very overwhelming at times. So, I can’t tell you how much I appreciate your ears and your voices during this time. Again, I’m sending big hugs and love to all of you! ❤️✌️
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disgustedtoo Sep 2019
Bet step-sister didn't like to hear any of that! Some people don't get it.

I can only hope that if dementia is in my future that my kids will treat me kindly as you do your mom. I was, for the most part, their all. Dad was "in the picture, but only just. I did tell them that if they were not comfortable dealing with it, not to worry about it. It isn't for sissies and hearing/seeing/learning all that I have had to go through with mom isn't for everyone! I can only hope some asteroid or something takes me out before any kind of dementia can creep in!! Mom was really one of the luckier ones - she made it to 90 or 91 before it became noticeable - minimal at that time, but we will had to learn and make plans!

It is a constant learning process. I knew nothing about dementia other than the word Alzheimer's (most likely mom's is vascular.) I started out seeking information so I would know how to recognize the behaviors, react/deal with them and what to perhaps expect. One thing was clear - although there are general paths of behavior/memory issues, every person goes down their own path.

Mom will be 3 years at MC in January. She turned 96 in August. She was the first to move into the MC (place was rebuilt) and of the few who moved in shortly after, she is the only one remaining, everyone else came much later (seems like every few months there is a new face.)

The saddest ones (they are ALL sad) are those who are still fairly young, some younger than ME! Once happy vibrant lives brought down by this. Can't speak for my brothers, but I am thankful mom got so many good years before this. She has outlived all others in her generation of family and most friends. Who knows, she might outlive us too!

So, keep on learning, do keep reading here, even topics that might not seem to apply, as they could help you in the future! The first few times I read people recommending testing for UTI when odd behavior occurs, I pooh-poohed them. Not anymore. First UTI, mom became a raging person, needing to get out, go home, guests coming, every afternoon/evening! Happened on a Friday night, no access to doc until Monday. Antibiotics for the UTI, Lorazepam for the "anxiety", which was needed until the UTI cleared. More recently, bed wetting. Although we had already switched her to disposable undies, more because sometimes she couldn't get undressed quick enough, she started wetting (read soaking) the bed and herself, and wouldn't get up if they tried to wake/toilet her. Sure enough, another UTI! Once cleared, no more bed wetting.

So, keep on learning, loving and caring! Your mom sounds like she is in that mostly enjoyable state, so relish it! Don't try to convince her of anything, don't say NO to moving, even though you won't move her, don't try to explain what is going on, just enjoy, try to brush off the questions/comments, change the subject, defer what it is she wants to "later", aka don't be specific about a day or date. As Isthisrealyreal found out, once in a while something you say or do just might stick with the person and it might not be something you want to stick!
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I don't know if it would do any good to tell her. My sister in law with Alzheimer's can never remember that she has the disease.
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A mid-line on the ‘telling’ might be to talk to your mother about the changes that happen to everyone’s brain as they age, and the range of changes from dementia to just the bit where the brain cells shrink (I’ve forgotten how to put this accurately, but I do know it’s true – my MIL at 99 had brain deterioration without any dementia). Tell your mother that like everyone who is getting older, her brain is different from day to day. When things aren’t good, it wouldn’t be safe for her to be at home. When things are good (like today, Mom) it’s hard to accept that you ought not go home, but the reason is that things will be different in a few days. Here you are safe on bad days as well as good days. You don’t need to announce ‘you’ve got dementia’. That explanation might make sense to her when she is lucid. Best wishes, Margaret
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I had an experience once with a woman I'd never seen before. I was in a hospital seeing my husband who'd had surgery. For some reason, they had a dementia patient on the same floor. One day there was a huge kerfuffle, and I went out in the hall to investigate because my husband was very ill and trying to sleep. This woman had gotten agitated, was clearly upset and frightened. There were two aids (I think) who were yelling her name and pulling on her and talking to her like she was a misbehaving child. Meanwhile, she was worrying loudly about the "business and the deliveries and Bill". People kept pouring into the room and adding to the confusion by trying to deal with her. I had been so exasperated by the poor care my husband had gotten and the general chaos, I took over. While nurses and staff stood around, arguing about what to do and yanking on this poor woman, I called her name and told her not to worry because they called from the depot. I said the factory had a backorder and a missed deadline and the delivery was delayed til Tuesday. I told her Bill had called and hammered out the details with the customers, and it was OK. Bill would be in around noon tomorrow. She settled right down and cooperated with the staff. Then I went outside her room and let the staff have it. I thought if I (with no training at all) could figure out that you just need to treat the person with respect and figure out how to go along a lot of the times, why the heck couldn't they? I think the worst thing you can do is bend down or stand over them and call them "honey" or "sweetie" when you don't know them. It doesn't need to be the truth. It just needs to be what they need to hear.
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RedVanAnnie Sep 2019
I love that you spoke to the woman within "her own reality." Just the right thing to do.
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You are definitely on a trip together. Just don't tell her where she's going.
Try reflective responses to her questions, i.e. : "I'm ready to go home now."
Mom, I know you enjoy (the garden, the .... your favorite chair ...
Do you have a favorite sweater (or blouse) you want to wear? That could go into knitting, your creative projects, etc.

Although I know it isn't a good idea to bring up things that they won't necessarily remember so you don't want to put them on the spot -- it may take some finesse on how to divert attention. You could role play with a friend. Or look at some You Tubes.

Best to try to answer a question with an open ended question, that can lead into other subject matters.
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My Dad had loads of lucid times, although they are reducing now.
i think telling them they have dementia will make no difference. My Dad would have denied it anyway and say they had made a mistake. Part of the disease is denial that anything is wrong.
He always wants to go home and has tried everything. Bullying me and the staff. Saying he has been mistreated. Telling me others are going home. The list is endless.
i just agree or say oh you are possibly right or change the subject.
good luck
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I just told my mother that her brain was not working as well as she got older. It's kind of like people with schizophrenia - when they are taking their medicines and feel fine, they decide that they are ok and don't need them anymore. They end up in the hospital again in a worst state than before.
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Being told she has dementia wouldn't be meaningful to her and it would mean nothing as far as her own future expectations. She lives and thinks moment to moment. Your interraction with her needs to respond to the moment at hand.
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Judy79 Sep 2019
I have told her that she has dementia and what kind.  I complement her as much as I can.
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Interesting responses here. My mom knew from the beginning that her memory was bad and still knows. I don't have to tell her. There are of course times she will say that she did not say or do something when she did and I learned very quickly not to argue with her. But if I ask her something she will sometimes say "I have no idea. I don't have a brain. You'll have to ask someone else". Also many times she has asked me what happened to her memory and I explain. It seems to bother her more to not know what is wrong with her than to have a simple explanation.
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I have told my mom that she has dementia.  The mild kind.  She is 88 almost 89. It's more of an age related dementia for her.  I will continue to tell her that I am very proud of her and I love her.  Of course, my mom is in a memory care facility.  That is where she was put initially.
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Dementia was a word first coined in 1910 after a German psychiatrist Dr Alzhimer found physical changes in the brain of "some" patients in their 50's who suffered confusion, memory problems and other symptoms usually associated with being much older.
Ask yourself "does giving a disease name help my Mother to understand & enjoy her life more? ...&/or make any solutions for her or yourself?
I suggest not
Does it give doctors a reason to load even more stress in the form of additional medications (with severe side effects) into an already weak system.?
Definately
Telling a person they have "X disease" merely saddles them with unnecessary fear and dread
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If I or the doctor told my husband he had Alzheimers he would become very angry. Would he remember it 1/2 hour later......maybe. It is surprising what he forgets immediately and how he remembers other things longer. He gets agitated as it is when going to see his doctors, like a kid, I would not want him to have this worry too. What good would it do?! When he gets upset, concerned about things he doesn't remember/know, I say "that's ok and not unusual as we get older, that's ok." And I change the subject. I try to keep things calm and happy. I take one day, one minute at a time. Live in the moment. Being my mother's caregiver, due to Alzheimers, was a real training for me.
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Ricky6 Oct 2019
Very well described and Very true.
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