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Mom is 93 with Dementia. She still knows who each of us are but forgets things. She is in the dementia section of a senior living center. Dad passed away several years ago but she insists she talked to him the other day. She is always asking where he is. My brother passed away last Friday but we haven't told Mom yet because of the Covid19 restrictions. We visit through a window. What should we do?

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Would she expect your brother to be at the window visits or to call her?

I think I would not mention it. She is unlikely to be able to process the information, but it will make her sad anew each time she hears it.
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What would be the advantages of either telling her or not telling her?  For the former, she may not remember, or understand, but if she does, it could cause her painful grief and more of a sense of isolation in that another family member is gone, not to mention grieving from the loss.

If the latter, what would be the downsides?   If he visited periodically or frequently, you could make excuses - car problems, house problems, etc., wash and repeat.    If he visited rarely, would she be aware that he's still not visiting?

I think the question is how would she react to either telling of his passing or not, and which would be the easiest and most helpful for her?
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I would not tell her. Did he live in your area and was he able to visit? I think that you should wait in case your Mom asks. Speaking of old times is what most seniors in Dementia do. They don't often talk about the present. If she starts to ask about him, then I think you will have to approach this with honesty. If she doesn't ask, I wouldn't. Try to continue to divert her with old days. With photo albums of the family when he and all the rest were younger. Those are the days, the long term memories that will most interest her now. Play it by ear as time goes along. Good luck; hope you will update us.
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“Honesty” does not always mean the same thing as “fact”.

My LO has suffered more than enough. I don’t tell her anything that could distress her. I see no reason for her to have such information.
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Please do not tell her, because she'll be distraught then later forget. She'll ask where he is, you'll remind her he died, then it'll be like she's hearing it the first time all over again.

Imagine losing a child every day or week -- that's how it'll be for her.

We've lost two close relatives since my mom started with dementia. I haven't told her and won't.
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I'd suggest running this by the social worker at the facility or if mom is followed by a psych APRN monthly for medications, maybe you could speak with him/her to see what they think. Unless she is intent on knowing and cannot be distracted or provided with a reasonably plausible explanation of why she has not seen her son, I see no advantage to telling her. Consult with people who interact with her on a daily basis before you decide. My condolences on the loss of your brother. I wish you well with your mom.
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When my relative with dementia about my father who had died we just would say “oh he is sleeping right now.” And he would be ok with that answer. He asked a lot.
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When my brother's daughter overdosed, we chose not to tell mom.  The granddaughter had been in a lot of trouble and had not been around much over the years so she wasn't a constant in moms life and we figured no good could come from telling her.  I know other family members disagreed with my brothers decision, but they aren't the ones dealing with mom.  It was hard enough for us to mourn the loss.  Mom has never asked about her even though we keep a picture of her in moms room. 

You can only do what you think is right.
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disgustedtoo Aug 2020
In your case this granddaughter had not really been on the "radar" so to speak, for a good long time. At some point a memory of her might come up, but cross that bridge when it happens!

"It was hard enough for us to mourn the loss." - This is reason I disagree with those who say be honest, don't hide the truth, don't lie to those with dementia. It will be hard EACH AND EVERY time you have to tell them! If the LO is just old, has medical issues, but no dementia, then sure, be honest. Just not when dementia is a factor!

The only time I mentioned a cousin has passed to my mother, she was mad that no one had told her. But I just did! Last time I was able to visit and hear something other than repeating how she liked some pair of shoes on sale someplace, I could tell from that "discussion" that she is living her life about 40 years ago! My brothers don't really visit (can't now) and her occasional queries about them stopped many many months ago. Out of sight... out of mind... She doesn't remember what she said or asked 2 minutes ago, so I would NOT tell her about anyone passing away.
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Is the pain of telling the truth greater than the pain of lying about it? I tend to be a truth-teller but I also lean in the direction of being kind. Kindnes does not hide the truth but tells truth s a sensitive manner. Maybe, plan a memorial that she can be involved in. Give everybody a chance to mourn and deal with the loss together: online, window memorial, Facetime at a facility where the memorial is happening.

Yes, she will be upset... so is everybody else. Give her the opportunity to process the loss. Then, allow her to move on with her life.
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disgustedtoo Aug 2020
Has anyone with dementia ever "processed" anything, esp a loss? My mother can't remember anything she said or asked, or that I said for 2 minutes! If she asks about someone, I don't necessarily lie, but there's no point in dumping the raw truth on her, causing her anguish and then have to do it again, and again, and again... Let the sleeping dogs lie.
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First of all, I am very sorry for your recent loss. Second of all, I would not tell your mother about this loss. If she asks about your late brother, focus on past memories. She may be confused about present news, so no point in causing Mom unnecessary distress. Condolences.
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This is a common question with this health condition.  Once you tell her and she becomes upset; only to forget about it and ask where he is the following week or two or three ... what will you have accomplished ?

Are you lying to her; or sheltering her from unnecessary grief ?
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disgustedtoo Aug 2020
Doesn't have to be a lie... there are ways around the question, by turning the focus to memories or giving a truth such as "I haven't seen X in a while." That is whitewashing the answer, but there is no point, NONE, in telling anyone with dementia over and over again something that will cause them anger, anguish or grief. NONE.
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Don't. She won't remember. You'll have to tell her repeatedly, which will only hurt you. There is nothing to be gained from telling her. When she remembers him and asks about him, redirect her attention.
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I wouldn’t. She won’t remember your telling her and will keep asking.

My friend’s MIL had severe dementia and kept asking about her husband, who had died several years prior. Friend would tell her that her husband was in Heaven. She would get upset and cry each time. It was like hearing the news the first time, every time she asked. And she’d ask 100x a day. Same reaction each time.

So it was time for the ‘therapeutic fib’.
“Oh, he’s at work.”
”He had to go to the store.”
”He’ll be home later.”

She’d still ask all day, but it spared MIL getting upset and reliving the shock.
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The same thing happened to me only I had my father at home. I chose not to tell him because I knew he would forget and like someone said, if I reminded him it would be like losing a child every day of the week. I think my father knew somehow...overheard whispered conversations, noticed the phone rang less. But he never asked about my brother. I wouldn’t tell your mother. You’ll figure out the most appropriate thing to say if she asks about him.
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Go along with her happy stories and think of her son as being busy in a better place like on vacation and she will see him when the time is right is the way I would approach things at her tender age.
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Hello doxrus.

could your brother have gotten a job and moved ? Maybe he won a cruise ?

my daughter died a year and half ago and as far as im concerned shes still living in her little blue house in ky.

When your mother gets to see your brother again she’ll find out soon enough.

why not let her think hes having adventures in the meantime.
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Sorry to hear about your brother. My husband is 58 with Alzheimer’s and his brother passed in April. He is 1 of 5 boys, only him and another brother remain. I didn’t tell him about his youngest brother cause anytime I tell him something sad he cries. He’s a very sensitive person and is worse with Alzheimer’s. I agree to not tell her, she will see him one day. Let her enjoy the memories while she can. Prayers to you
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I went through this with my husband not believing I was his wife. Every day at 3:00 pm, he would ask me to do him a favor, take him to see his wife and son whom he left in a city 190 miles away from where we moved away 30 years ago to work overseas. I showed him our wedding pictures, and pictures throughout the years, but he said I, in the picture with him, was not his wife, but the man was him. Nothing I said or did would work. Then he started to leave the house to hitchhike "down there" which was truly south of where we lived, and no matter what I said he didn't believe me. I routinely asked him who was I when he was talking about his wife. He kept saying I was his friend. Partway up the street/boulevard, he would get tired and turn around and come back home. One day he crossed 6-lane boulevard in front of our house while I was in the bathroom, and I was frantic. He didn't use the direction he always used, but the opposite, which I didn't know where it would lead. I started to run aftr him, but at 79 I couldn't run at all, would fall if I did. So, then I thought, he always turns back, and about that time, while I was looking at him walking away from me, he turned back. Thank God. I got to where I just let him think I was his friend. HURT!!!! but worth it to just have peace and quiet of hearing he has to see his wife.
Your parent may not remember even if you tell him/her, but just let them ask. Make excuses if they don't get it that your brother died. They are in a different world now.
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Lovejoy01 Aug 2020
Thank you for sharing your story! I’m still crying. In part for what you’ve gone through and in part grateful I did not have to go through anything like that.
Keep writing! The biggest help for people in the midst of a family member with dementia is in your details. Thank You!
Dianne
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Dear "Doxrus,"

After reading all the responses, I can see there really isn't a one-size fits all answer. I think their are many aspects to consider as everyone has mentioned with some differing thoughts and questions for you to ask yourself.

My circumstance was different from all the others. My mom is the oldest of eight and until 2016 all of them were alive except one who passed away long before she was diagnosed with Alzheimer's at the age of 89. Currently she is 95 and has five siblings remaining ranging in age from 75-89.

I look at their personality (prior to their dementia diagnosis) for starters. My mom was always a strong, independent type which I took into account. The second thing I considered was where she was at in her disease. In the first couple of years, she would become very emotional (which can be common) which I've never seen her display very often throughout my life. It wasn't that she didn't feel those things, she was just private about it and also, it came out in other ways physically from holding it in - keeping the "stiff upper lip" so to speak. So when one of her brothers passed away in 2016, two of her siblings called to let me know because they didn't want to be the one to tell her if she was to be told at all.

I did tell her very gently and a little bit nonchalantly because at this stage of her Alzheimer's she was no longer expressing emotions much. She didn't cry and wasn't upset - she took it rather as a matter of fact. The other reason I told her was because my mom has never experienced the constant "asking" about any particular person such as in your case (and many others cases) where your mom is always asking where your dad is and insisting she talked to him recently.

So, I really think it is an individual choice. Her new facility made homemade ice cream the other day for the residents. I said "mom, remember when you and your family were growing up you would make homemade ice cream? who would love to lick off the blade?" This gave her a chance to remember it was her brother who ALWAYS got to enjoy the fruit of their labors!

I think the bottom line is, you will feel at peace with one decision vs. the other and you will have your answer - especially if you don't overthink it. You and only you can truly know what is the best and right thing to say or not say. The rest of us can only give you aspects to consider in trying to help you with that decision.

I hope whatever you decide it works out for you and I am so sorry for the recent loss of you brother - may God comfort you in your grief and give you wisdom in making your decision.
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Lovejoy01 Aug 2020
Wonderful information about your process for figuring out such a difficult subject. Thank you for sharing with all. If we haven’t dealt with it yet we probably will eventually. Dianne
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I also wrestled with this decision (pre-Covid.). I finally chose to not tell my mother when her brother died. Later, I did not tell her when my brother, her son, died. At the time, it was an agonizing choice; however, I cannot say I’ve ever regretted it. My condolences on the loss of your brother.
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My MIL’s only living brother (out of 6 kids) died after she entered Memory Care last year and her niece passed away during the lockdown of a heart attack because she was too afraid of COVID to go to the hospital. We did not tell my MIL or FIL about either one. They lived far away from her and she hadn’t seen either in several years. When asked by the staff if she has family she will tell them she has 6 brothers (she had 3) and a husband. No mention of anyone else. Since she doesn’t live in reality we didn’t see the need to bring pain to her world by trying to remind her of her actual family set up and then tell her that they died. So we didn’t say anything, and she’s never asked.
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At that stage of their lives, no secrets, complete disclosure was always my policy. If she forgets because of the Dimentia that's fine just the same. Withheld from or lied to, we all reconcile & cope with it in our own ways. I don't want anyone making any wrong assumptions & decisions based upon lack of knowledge or information. If she is asking where he is, she needs to know about her son/your brother.

In my situation, Dad was starting to slip into milder dimentia, I think it was more because his heart, lungs & blood circulation was failing to oxygenate his brain adequately. It was more of a mild retardation process as he declined. He may have understood things or not at the end, but I explained as many times as necessary with that patience & understanding. None of it was easy, but he had a right to know the truth of those he cared about. I think the last 5 years he carried a burden that he didn't do enough for Mom when she had her 1st stroke. I know he mentioned it once as I was a live-in caregiver the final 2 years. I explained to him that even though there is a "miracle" drug that seems to minimize a stroke's damage, there is still no guarantee anyone recovers fully. See that only mitigates the stroke that happened, Mom had a series of strokes, and that first one was just a warning the others would follow. In his own situation, he would have a series of events that took a little more each time from him just the same. I recall him telling me, that things he enjoyed as favourite foods, he just didn't want them any more. The foods, I didn't put too much thought behind what that meant, what he was trying to say was he was ready to move on. The first item was glazed doughnuts, I figured he just didn't want doughnuts going forward.

Anyway, honesty & full disclosure is always the best policy. No regrets for playing the game of life without holding back.
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disgustedtoo Aug 2020
If it was just age and some decline, maybe, but with dementia, it is often VERY hard on the person to accept the loss and they suffer a lot from the "revelation." If they, like my mother, forget what was just said to them minutes later, then you risk hurting them and causing them grief over and over again.

When my mother first moved to MC, she was still aware that her sisters and brother and my dad had passed away. Over time, she forgot all that. The only time I mentioned anyone passing, it was a cousin of mine that I just found out about. She was angry that no one told her, but that was about it. However, based on multiple times she has talked or asked about someone, I KNOW she is living her life about 40 years or more ago. She has asked about her mother, wants to go see her, know what she's doing for the holidays, etc. Her mother has been gone 40+ years! She mentioned her mother AND father to staff at least once. He died in our house when I was 10 (mom is 97 now.) She has brought up a younger sister and based on what she said, I know that she was reliving times also about 40+ years ago.

I will NOT tell her the "truth" about her mother, father, siblings as I know each and every time she will be angry and go through grief over losing them. What purpose would it serve to make her angry or cause her grief, each and every time? There are ways to respond without telling the truth or lying - turn the discussion around to memories, have them relive HAPPY times, not grieve each time you have to tell them! If the question is simple, like have you seen Johnny lately, you can just say no, not recently and drop it. Some people are more adamant, as shown in some of the other comments, demanding to go see the other person - we have to tread carefully. Telling the truth isn't always a good thing.
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Sincere sympathies for your loss and your dilemma!

Reading all the comments, the majority would seem to lean towards not explicitly telling her. Although she still knows who you all are, that is likely because she sees you, even if it is window visits. The fact that she was aware/told of your dad's passing, she still considers him alive and has seen/talked to him. I don't think she's going to take the loss of a child well and/or retain that fact.

My mother used to ask about my brothers often (one doesn't visit at all, the other wasn't big on it, and hasn't really in a long while, but both are still, I think, among the living!), but over time she stopped asking. Out of sight... out of mind!

As noted in responses to other comments, I can tell from what she does talk about that my mother is living about 40 years ago. She knows me when I was still able to visit. I think this may be because I would have been an adult at that time, so I am not TOO much different than before. I also visited regularly before the lock down. My daughter wanted a pic of the 3 of us, which a staff member helped with. Looking at the pic, she asked who "those girls" were, indicating my daughter and I. Then she asked if that was "Nana", her mother, in the center of the pic! She is now the only one left of her generation, on both sides. Many months ago she asked about a younger sister. Previous queries about her mother plus that discussion point to her living life 40+ years ago.

The only death I mentioned to her, about 2 years ago, was one of my cousins. I had only just found out, and she was mad no one had told her! Who was there to tell her? So, if her mind is in -40 years ago, everyone else is still alive and kicking! She also doesn't ask about dad, mostly her parents and some sisters.

Personally I will NOT ever say that someone she asks about is dead. In your case, IF she brought it up, you could make one attempt, if you felt it was beneficial and/or she wouldn't be devastated by the news. Clearly if it is upsetting to her, I would NOT repeat it again, no matter what she asks or how often. There are ways around not telling the truth or lying - as others suggested, bring up old happy memories and let her enjoy those memories! Simple non-committal answers and try to redirect the focus if she asks simple questions, such as:
Where's John? Oh, he's not here right now.
When's John coming? I don't know, I will try to find out or he's away and can't visit right now.
What is John doing? I don't know, if I see him, I will ask him.
Can I go see John? Not right now, he isn't home.

Last time my mother asked me if I'd seen her mother recently, I took a chance and said they were in FL for the winter. She thought about it for a bit and then said "They used to do that." Whew! I lucked out as I was afraid she would be angry they didn't ask her to go too! Clearly that WAS a fib, lie, whatever anyone wants to call it. I ONLY resort to this so as to keep her calm and happy. I don't want anything upsetting her.

You get the drift. It will be harder on YOU to have to relive your grief every time she brings him up, if she does. If she doesn't, so be it. Leave that alone!
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Imho, I cannot advise you if you should tell her of your brother's demise; while she certainly has a right to know, it may confound her doubly (since she asks routinely about her deceased husband). Prayers sent.
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First of all I am very sorry for the loss you have gone through with your dad and brother and losing your mom in a gradual way as well

That said, I personally dont see how any good could come out of telling your mom about brother. Others may have thoughts I am not considering, as is often the case.
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Keep in mind that when you tell a demented elder that someone died, they are going to forget it. Then, when they ask again where that deceased person is, you'll again have to tell them they've died. Again and again. So, each time they ask, they get to re-live the news over and over again, as if it's brand new grief to process. That's what makes telling a demented elder bad news a cruel thing.

If she's still asking about her late husband, then you see what I mean. She'll do the same thing with her son, and you'll be facing that dreadful conversation time & time again. (For what it's worth, my mother insists my late father is either sitting in the chair or lying beside her in bed at night; she has said that ever since he passed in 2015. Who am I to argue with her? For all I know, he IS there with her in spirit, as he had been for 68 years prior. If it comforts her, that's all I personally care about, you know?)

I wouldn't go there if it were me with my 93.5 y/o mother who has dementia & lives in a Memory Care ALF. The LESS info I give her, the less she has to obsess about. Especially bad news...........she's OCD on her best day, so bad news is something she'll dwell on endlessly. No good comes of it. Keep them happy at any cost, that's my motto.

I am very sorry for all of your losses, my friend. Sending you a hug and a prayer for peace.
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Has she asked about your brother? If not, leave it alone and let them see each other in Heaven one day.

When she does ask a question, does she remember what the answer was? Or, like your dad, she really doesn't remember that he died? If she asked, perhaps tell her that he hasn't been feeling well if you think a death conversation would make her sad.

I say don't discuss it until she brings it up. And then decide to tell her the truth or to tell her what you think she can handle.
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I'm sorry about your brother passing away, but I wouldn't tell her. No good can come of it. What will happen is that she'll get upset and be devastated, then she will forget. She'll ask about him again and won't remember that he died, so you'll have to tell her all over again and it will be like she's hearing it for the first time. She will just be re-living the same hurt and shock over and over. Don't tell her. If she asks about him just make something up.
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theguardian Aug 2020
You're spot on in your answer. My mother suffered through Alzheimers and what you described was exact. It wasn't just the original devastating news but the horrible re living it over and over till the day she passed. It was just awful to watch her suffer but not be able to comfort her. If I had to do it all over again I wouldn't have told her.
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I am sorry for your loss. Prayer for you and your family. If it was me I would tell her and get it off my chest at least you will be doing your part. She needs to know regardless.
I just told my parents of a sibling passing. I just said he went to be with the Lord.
Nuff Said.
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theguardian Aug 2020
Sorry but you're absolutely wrong!
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Right before he died, within the hour, my father with dementia asked where my brother was (who had passed the year before). I said he was on his way over. He smiled and nodded. I'm so glad he passed without last moments of any more sadness than there already was.

He also asked if my sister was still suing him. I didn't say anything. She was.

You live a long productive life and then sadness at the end makes it seem empty.
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