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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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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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.
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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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 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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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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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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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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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!)
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
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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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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