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My brother passed unexpectedly Saturday. We were supposed to take my Mother to see him prior that day. Mom has dementia but is not fully forgetful. I spoke to the nurse in Assisted Living who knows her best after after 2 1/2 years with her. The nurse said that she has MANY moments of being fully clear and lucid and that we should gently tell her. I went to her and slowly eased into the subject. She did not cry but was so deeply saddened and upset. She went between sad and laughing about this or that. All in all she was okay. Since then she will either call and ask how we think Steve looked when she saw him Saturday (she did not) to expressing how wrong it is that he left prior to her as it is not the normal order. Not depressed.


My question to you is...when she talks about Steve in the present as if he is alive, do we let her believe it?


Guidance is welcomed here.


Thank you,


Marie

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Murphy: Okay then.
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I have the same problem with my mom. She gets very agitated and says if Bill gets home and I'm not there he will be worried. I didn't know what to do so I told her that Dad had died and she got extremely upset. So next time she said it which was less than two minutes I lied and said he was out fishing with Scott (my husband who has also died) and she said ok. Didn't ask again for a couple of days and now I just say he is out somewhere and that is it. I don't know if I am doing the right thing but my theory is to keep them happy so if I have to lie I do. Hope that helps. This is not easy. I feel like I need to go to a class and ask someone with experience these questions because I don't have a clue if what I am doing is correct. Good luck and I am so sorry for your loss.
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OldBob1936 Jul 2019
In my book you could not do any better...you don't need a class. you could teach one.
Grace + Peace,

Bob
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What I think is especially sad in your situation is that when we experience a loss we want to be with others who were close to the person so we don't experience alone. It might help you to just have conversations about your brother with your mom, stories about when he was younger, times your mom can remember. If it upsets her to hear he died, leave that subject alone.

When my sister died, over 7 years ago, my mom could still comprehend and remember enough to know that her first child was gone, just not what she died of. Now she asks sometimes how my sister is. I get out the pictures of my sister and her family and we talk about her. Usually Mom starts to remember and asks how my sister died. If her memory doesn't get to it, I let it pass. I do tell her that my dad died when she asks because she has never been afraid of the subject of death. I think she mostly wants to talk about him. His photos are all over her room and at her door so that she can find her room in assisted living.
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Murphy18966 Jul 2019
I am sorry you had to lose your sister! I hope you are enjoying life while keeping her memory alive!

Thank you for your insight on this. Mom seems fine now with knowing he passed. She keeps saying that at least he is not sick anymore.
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My Mum often asks where is Dad (who died in 2018) or where is Sean (her eldest son who died in 2014). Instead of informing her each time she asks, that they both died, (she suffers from advanced Alzheimer’s Disease), I feel it’s far kinder to keep a story going that they are both fine, they are together, or with another family member. When she asks where are they, I just say, I’m not entirely sure where they are today, but I do know they’ll be enjoying themselves, where ever they are. When she asks when will I see them? I say we’ll all get to see them at some point, when it’s our turn, but at the moment they are busy, so I don’t know exactly when that will be. I keep this story going and it seems to sit well with my Mum.
In the last year, I’ve learned, it’s far kinder to tell this ‘white lie’ than to keep upsetting my Mum with the sad news that my Dad and Brother have died.
I hope this helps you with your Mom.
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Murphy18966 Jul 2019
Yes, it does. We did tell her. She actually remembers now on her on and if she does forget we just ride it out until she remembers. Thank you!
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This happened to my cousin and aunt.
They decided not to tell her that he died, but she insisted talking about him as though he were in the present. Eventually, she told them that he told her to be ready to leave on a trip. She was excited and happy. She passed peacefully.
It may help keeping someone with dementia a bit in the dark. Truth usually upsets them more than it's worth. Good luck.
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Murphy18966 Jul 2019
Mom has too many moments of being lucid that we had to tell her. She took it so well knowing Steve was burdened his entire life with illnesses and was still very sick. Thank you!
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Hi Marie,
I'm sorry for you and your family and the loss of your brother. When we lose siblings it's just hard; I lost my brother two years ago.

My mom has Alzheimer's. Even though our situation is different maybe you can find something helpful in my experience.

Mom didn't realize on an emotional level that Randell was so sick. She and Dad saw him everyday for the last three weeks of his life. Dad told her he passed and she responded to Dad's emotion more than the news of Randell's death. It just didn't compute.

Dad struggled with how Mom might do at the memorial service. Because she just couldn't comprehend the event, she wasn't sad. She just enjoyed seeing all the family and having lots of hugs! What a blessing that she doesn't have to go through the grief of losing a son.

Now they talk about him through pictures and Mom refers to him as her baby boy. She has never asked about him in the present. Then again, she sometimes doesn't even remember she still has two daughters.

When we're all together we talk openly in front of her about Randell, the past, and on occasion about his illness but she simply doesn't have the capacity to realize he's gone.

Blessings to you!
Darra
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Murphy18966 Jul 2019
Thank you! My mother took is quite well. She was upset, her eyes filled but then immediately said that he is at peace. She has continued with this since the 8th so it did sink in but does not burden her...thank God!
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My heart hurts for you.

You cannot share the grieve with your Mom like a normal situation because you are not in a normal situation. Everytime she brings him up, I'm sure it will be hard/harder for you.

My Mom would always correct my Dad when he spoke about his parents or his siblings who had passed away. He would be devastated. It was heartbreaking.

Try to remember how she would be if things were normal. It may of brought you closer together especially if she held all of you close to her heart.

I never knew my grandfather and my grandmother died when I was 8 yrs old but I heard stories about them. Those stories sometimes brought up conversations about them. When my Dad would ask about My Grandfather, I'd tell him he was at the ranch or working at the store then ask him to tell me about the animals or about the family grocery business. Sometimes funny stories would come up and we'd be laughing about a situation or something funny he remembered.

I think those conversations taught me more about my Dad than at any other time growing up. It also made me feel closer to the grandparents I never knew.

I hope you can realize that Mom is kind of stuck in the past. A past that may not include death. She may never remember your brother's passing. You will have to deal with the sadness over and over again if you keep reminding her. Remember it may always be the first time she was told of his death.

Please use it to your advantage. Honor your brother by remembering him and your memories. Bring up some good times together. Maybe his first job, first child/grandchild, costumes during Halloween, him getting caught my mom sneeking into the house after curfew, etc. It may also help you grieve.

Take care of yourself. Sending you love and prayers.
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Murphy18966 Jul 2019
Thank you very much. We did tell her and she said he is at peace after his life of sicknesses. She does not cry, remembers but when she doesn't we don't bring it up again!
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My brother passed away 2 years ago tomorrow, July 13th after an emergency surgery. He's bowels became septic due to a hernia operation, I told mom that he had passed, but she would not believe me. She is currently in a nursing facility due to a fall that be broke her hip, I think that the meds she is currently on and her increase severity of dementia has taken her to a place that she is hallucinating his presence. She tells me every day how nice their visits are. I just let her live there in the moment because you have to pick your battles and no matter how many times I explain he is gone she won't believe it. It makes my life harder knowing I'm going to hear this every day because I miss him so much, but it makes her happy that he's visiting,

.
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Murphy18966 Jul 2019
WOW...so sorry. This kind of loss is extremely hard. I hope you are doing well. Your advice was very helpful. Thank you!
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So you expect her to talk about Steve as if he were still among the living? I am very sorry for loss. Best to just change the subject if and when she does this.
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Murphy18966 Jul 2019
We were told to tell her. She took it well and has remembered since then with a few exceptions. Thank you.
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Benign fibbing is part of dealing with the elderly especially if they have memory problems or full Alzheimer's. You already know she was deeply saddened when you told her before. Why do that again? It's perfectly fine to make something up and tell her he looked pretty good he last time you saw him.
I've cared for my mom for five years now from mild cognitive impairment (forgetting, asking the same questions over and over, etc.) to mid stage Alzheimer's. I've gone to classes and conferences, and many sessions of support groups to realize that your
loved one's well-being is more important than always telling the truth. I want my mom to be as happy as possible in this "no quality of life" existence she now has. She has limited sight and hearing and the simple joys of reading and looking at photos are over.

I started with help in the home ,which she fought, then assisted living, and after a fall, she went to a group home with ten residents and two full-time caregivers. She just wants me to be with her as often as I can and hold her hand. I went from seeing her three times a week to usually once a week. I no longer worry about her 24/7. I wish I could have persuaded her to go o the group home first, but she still in pretty good shape for two years. Once they fall, it's downhill for sure.
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My mom is in the same way. She just turned 94 and she said to me I feel bad as mom (her mother) never sent me a birthday card. I go along with her. I said oh, it probably got lost somewhere in this place. If you tell her someone has died, she will cry uncontrollable and say what how come I don't remember. Then it will be the same the next time, as she won't remember and go through the heartbrake again. My mom is one of 10 siblings and they are all deceased, but she does not remember some died. It is hard at first, but after awhile you just go with it. My brothers usually change subject or take a walk when they come back she is on something else. Oh, her mom died in 1967. She knows everything that is going on currently. Very aware of everything around her. She amazes the whole staff.

Ccondolences for your loss.
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I am VERY sorry to hear of your loss & this VERY TOUGH FAMILY SITUATION! IF you want you can call me at my home in Michigan.
Dr Jack Grenan

God Bless Your family!
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Murphy18966 Jul 2019
What a wonderful offer Doctor. Steve was an accomplished Doctor himself. We told her and she was actually comforted that he is no longer in pain. Thank you so much!
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That's the big difference between Alzheimers and Dementia. 1 can have Alzheimers, while others have Alzheimers/dementia or Dementia. Many people do not realize how these illnesses can be intertwined.
Dementia deals more with hallucinations and periods of loss of the past/current. I had family members who had either 1 or both as well as helping my in-laws with their Mother when she suffered Alzheimers.
My Mom/stepfather are in assisted living group home for the past year. I visit once a month as I live out of State. There are residents suffering from the same issues, but I absolutely love all of them.
This has been/is MY WAY of handling these things.
Me, how are you doing Ms F? Everyone one of them and the good ones twice! EVERY SINGLE TIME I VISIT. My stepfather asks which one of Mom's siblings am I. Starting to ask me if I'm his eldest daughter now. I tell him over and over who I am and he goes through the list of names in order. The trick is to give the same answer but in a different way. DO NOT BECOME FRUSTRATED IN FRONT OF THEM OR IN YOUR VOICE. Very important because you will cause her to become agitated which will cause big issues with you, caregivers, greater hallucinations. Talk with her like everything she is asking is normal. You don't need to broach the subject any longer as she will when she remembers. There may come a time she will start talking with him while you're visiting. When she does, ask her what he's telling her and is he ok. I did this all of the time with my husband's grandmother because she was talking with her deceased husband (family members do come to visit, especially death comes closer), my in-laws thought I was crazy. Nanny would talk with me even when her family members were all in the same room. Our daughter was the only grandchild she would actually know and call her by her name! DON'T WORRY ABOUT IT, treat her as if all is normal. You will never ever get her to understand, ever so don't try. It hurts that you feel she doesn't understand, but she understands more than you think. She is asking to confirm in her mind.
It has been Scientifactly proven that hearing and brain waves still work after the heart stops (UK College of Science/Medicine) so she'll hear you and understand until she is given permission to leave you with your brother.
Just go with the flow....
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Condolences to you...so sorry for your loss of brother.

Yes, don’t worry about Mom forgetting about brother passing. Just talk as if he’s still alive. She won’t remember or understand his passing. Don’t expect her to remember & don’t remind her.

Hugs 🤗
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Murphy18966 Jul 2019
Thank you. Advice we are using today!
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Murphy18966; Hello ! SORRY FOR YOUR LOSS! In my opinion loss of a child is the ultimate worst loss any parent can endure ....my sister died and my parents were NEVER THE SAME !! If your mom actually forgets that bit of sorrow every once and awhile then so be it maybe a good thing I would just change the subject or change her focus ..after all our children are supposed to out live their parents..GOD BLESS YOU AGAIN SO SORRY FOR YOUR LOSS!!
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Murphy18966 Jul 2019
Lorraine12, so very sorry about your loss as well. We did tell her but if she forgets we just go along. She eventually remembers and thanks God he is out of pain.
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I say go with the moment. If she's talking like he is alive, let her talk. If she asks questions about his death, give her the answers.
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Murphy18966 Jul 2019
Yes, and this works for her!
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I offer my sympathy for the loss of your brother....I believe the best thing to do is not correct you mom when she speaks of your as though he were still alive. If she asks why doesn't he come and visit from time to time, gently tell her 'mom, you may not remember - he died so and so long ago. We told you about it...Sometimes we all forget.'

My thinking is that it is best to not have her be upset the majority of the time...if You gently correct her each time she mentions him as though he is still living, that will add to the stress for everyone.

Grace + Peace,

Bob
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Murphy18966 Jul 2019
Your advice is spot on! Thank you.
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Sorry for the loss of your brother so soon/suddenly and sorry for the loss of the mother you knew (she's still here but going through many changes!)

As others have said, go with the flow. If she is in a lucid moment, and remembers he has passed, try to divert the conversation, perhaps initially to remembering loving or funny moments with him, but guide her focus to something else. Remembering the good times with her might help your grieving process as well. If she is thinking he is still alive, leave the "door" open to hope (we'll visit tomorrow, he'll be here sometime later to see you, etc.) and divert the conversation to something else. Keep it simple, no need to weave a whole tapestry! Remember, for many dementia patients, tomorrow never comes, so you can use this excuse/diversion again (not so much for those in earlier stages, but it might work.)

Our mother, after 9 months in MC, started asking about her mother or asking to have someone call her or drop her off there to visit her mother. She's been gone about 40 years! Much later after that, she has asked staff about her mother AND her father (he died when I was 10!) If she brings it up, I do NOT tell her they are dead - this would be painful/hurtful for her AND she won't remember, so she would have to be told over and over again, putting her through that hurt and pain over and over. I've been able to deflect the asking/requests - first time was can I drop her off at her mother's on my way home - oh, it's late, not on my way, maybe tomorrow. She accepted that. The last time she asked me if I see them, it was winter so I said they went to FL (took a chance on that one!) She thought about it and said well, they used to do that, and then we moved onto something else. Whew, dodged that bullet! I was afraid she would ask why they didn't ask her to go. In nicer weather, if she asks, they will be visiting relatives in NS (she does still remember them and some came to visit last fall, which was good for her.) She's been there 3.5 years now (will be 96 very soon), slowly progressing back in time. She is the last of that generation on both sides of the family (oddly she doesn't ask about her brother and sisters. She does have some pictures of them, and will sometimes cycle through them, but doesn't ask for them.)

This could get worse before it gets better, so do what seems to be best for mom in the moment. Don't make her grieve over and over. On my last visit a few days ago, I asked mom who the lollys in her pouch were for - her kids, if they are around... ??? I pointed to myself (her hearing is shot) and she asked if my kids were around. Although she seems to know who I am when I visit, it is odd that she is thinking of her kids (which would include me!) as little lolly kids, yet I am there! Not only does dementia suck, but it behaves so oddly sometimes! You just have to be quick thinking and dodge the bullets!
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My mother was there when my brother died in 2014. In fact, she was the only one with him, and they had lived together for 26 years, each taking care of the other.

Then, about two years ago, Mom's memories faded, and she started asking about where was Jim, and I told her he had passed, and it upset her greatly. The caregivers at the memory care unit told me it was better not to tell her, that it only would open wounds.

As others have said, sometimes Mom is lucid and clear and we talk about Jim. And sometimes she remembers he has passed on her own and we talk about how great it was to have them take care of each other.

But when she doesn't remember and asks about him, I just talk about him, tell her he's doing fine, and then we reminisce about times we had together, or I let her talk.

It hurts both ways, but it gives her a little peace.

“Grief, I’ve learned, is really just love. It’s all the love you want to give, but cannot. All that unspent love gathers up in the corners of your eyes, the lump in your throat, and in that hollow part of your chest. Grief is just love with no place to go.” 
― Jamie Anderson
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I would just let it flow, if she thinks he is still alive, it's ok. The disease will continue to worsen, soon, this will not be an issue. So very sorry about your brother.
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Condolences on your brother.

I got this from a pamphlet called
Planet Alzheimer’s

Here's 10 rules while on planet Alzheimers. 

1. Never argue
2. Logic and Reason do not exist
3. Lying is acceptable 
4. You are not who you think you are, you are who they think you are 
5. Never take anything personal
6. Old memories are best
7. Learning to do something new is not important 
8. Being loved and accepted at all times is
9. Have NO expectations 
10. Take advantage of the shuttle back to earth as often as possible.

The road to come is an absurd place. 

Take care of yourselves.
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I can't even express how much I love this. I needed to see this, thank you for sharing.
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I am sorry for the loss of your brother; it's difficult. While working in a NH for several years, we told the resident ONCE that a LO had died to allow them to grieve. Thereafter we let the resident believe whatever they wanted. There's no point in upsetting them over and over. Do be sure to keep pictures of the family members and other LOs in her room.
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What I would do is simply mention him every so often. Put his pictures out all a round her. Don't get upset, when she doesn't remember. Talk about him, when she is remembering. I'm so sorry for your lost. May, his soul RIP. It won't make much sense to do anything else. Let her believe what she believes. It might be how she is coping & keeping him a live. When, my grandson died, I couldn't go to his grave. I needed to remember him a live, ten years later, I still feel the heartbreak of missing him.
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This is one of the tough ones...like it isn't all tough to get through... I would try to divert the conversation. If she asks where he is you could say something like, "well, he's not here to day." "I will give him that message." "He's so busy with new adventures." You don't have to "lie" per say, you have to divert. The truth is he hasn't gone anywhere in her mind and she is probably thinking of past things. Is there a social worker who knows your Mom that you could talk to for advice? Senior Services? The one thing I have been taught is not to give upsetting news unless necessary, and I can't think of anything worth upsetting a dementia patient because they are only in that moment and won't retain it. It only makes them anxious and fidgity and they don't understand why. My heart goes out to you and I am praying for you to get some peace of mind.
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Yes. Let her talk and talk with her as if he were still alive. If she asks where he is make up something plausible. If you tell her he died every time she mentions him in the present it will be as if he died over and over again. This happened with our father when he asked where our Mama was. I just told him she was running errands or something. So sorry for your loss. God bless.
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Talk of the Nicer Memories and Go along with her flow, She don't Know......
I'm So Sorry for your sad Loss, Dad's Brother Pete Died Sunday of Cancer...
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Be gentle with her and let her take her time to cope with the grief and loss. The loss of a child is the saddest thing a parent can bear. Our sympathies to you and your family.
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Yes, let her believe he is alive. Just deflect the conversation the best you can.
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thepianist Jul 2019
And in a way he is alive, in his mother's heart and memory.
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I am so sorry Murphy18966 for Your terrible loss. Honestly I would not have told Mom as bad news is a definite no no. Lord knows Your Mom is battling dement and Life is sad enough. Only bring the good news. Speak of Your dear Brother in the present, never in the past and when ever Mom speaks of Her Son mention how well He is doing, and how happy He is. Remember to remind Family members to do the same, or Friends who might call to visit. Occasionally buy a box of chocolates or a bunch of flowers and say to Mom " Your Brothers Name and He brought these to You Mom when He came to visit. This will please Your Mom, and as this is what You wish for to see Mom happy You will be much happier too. My Mom suffered from alzheimer's and I never told Her of the diagnosis. I only brought good news, and I told my Brothers to do the same.
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thepianist Jul 2019
Mother doesn't need to be corrected when she mentions her son as if he's alive, but I'm not sure an elaborate web of concrete lies is the best thing either. Let her talk about him, even invite this, but if you pretend he's at home, on vacation, etc., I don't think this is the best thing. In her moments of 'presence' I think she may know on some level that her son is gone (wherever 'gone' is).
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Terribly sorry for your loss.

You felt responsible to notify your mom... and you did.

There is no need to repeat or relive the loss a thousand times - for her, but mostly for you. It doesn’t stick with her now, and although she does not react with complete emotional devastation, it probably doesn’t help her either.

If we have to lose our memory, the only positive is we can also forget the painful memories. Don’t force her to dwell there.

Since her world isn’t perfect anyway, why not let her live in a world where people “die in the natural order” as she mentioned.

When she she asks about Steve, just. say, “ We’ll see him a different day.” You will feel better too.
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