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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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Yes, you let her believe it. I have a son that died almost five years ago. For one thing, the reality has not hit her yet AND with her having dementia, her reality will NEVER be normal! Maybe she’s dreaming of him at night, and those dreams can feel so, so real. If she’s dreamed of hugging him just the night night before & thinks it was real, then you remind her he’s dead, that’s literally a stab straight in her heart. You die a thousand deaths, when you bury your child. There’s no purpose in reminding her he’s gone.
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If she were in the later stages of dementia and she was very very disturbed by the repeated news, my answer would be different. But, since it sounds like she is in the earlier stages, I think that you can gently remind her, at least for a period of time, like a week. Then decide, based on her reactions, how to proceed. I'm so sorry for the sudden loss of your brother. I'm so close to all my siblings that I can't fathom loosing them, my heart goes out to you.
This video might help you: http://bit.ly/2XxaIzF
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Murphy18966 Jul 2019
Thank you Sofia. Life dealt him a brutal blow as he was brilliant, accomplished, funny but lived with sickness since birth and passed with 3 cancers and a bleeding spleen. Horrible for a man who cured the sick. It's brutal! I agree with your answer above as well.
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Well, you certainly don't flat-out contradict her; that would be very unkind. When my mother became confused about who was still with us and who wasn't, I used to keep the conversation going and gradually lead her back to the present day.

But your situation is rather different. You have just lost your brother unexpectedly. Your mother has lost her son, and no one should have to "bury a child" as they say. As well as the difficulties of your mother's understanding, you have the immediate shock and grief of your own to deal with.

Give it time, let the feelings and information settle in, and then see where you are. If it's any consolation, you can't get this *wrong*. Saying what seems kindest and simplest in the moment is *fine.*

I do think it's important to let your mother talk about your brother, though, if it isn't too painful for you. Would talking about him as he was in life help you, even, I wonder?
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Thank you. She calls several times a day and some of those times she starts with asking me how I am coping with it and other calls are thanking me for taking him to see Steve before he passes.
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And Molly, I can't be more sorry for your loss!!
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If she is saying thank you for taking her before he passed she may fully understand but can't articulate her thoughts. That is part of dementia, thinking one thing, saying another and thinking you said something else.

I would talk about the good times and his great characteristics and how much you guys love him. Whether she is addressing it in the present or the past those things are still true and very real.

I am sorry for your loss. She is right, it is not the natural order of life but far to common. Hugs 2 u and mom.
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Murphy18966 Jul 2019
Thank you. Your insight is helpful and your kind thoughts consoling!
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I am so sorry for the loss of your brother. I know how difficult it is. My brother passed away three years ago. My mother sometimes forgets he died but I reassure her he is with the Lord and is at peace in heaven. She may tear up a bit but understands he is better off and not suffering any longer. I would explain to your mother that Steve passed on and he is at peace now. Talk about Steve and the memories you have of him during his lifetime. I pray both of you find comfort and peace at this very difficult time. God bless you.
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Murphy18966 Jul 2019
So sweet of you to reply and to share such kind words!
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Murphy, Sorry for your loss! I have no words of wisdom on this just my sympathy.


Hugs!!
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Murphy18966 Jul 2019
Thank you. It's going to be a rough time.
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I would treat this the way I would whatever time a person might be in at a given time, go with it. If her mind needs to believe she saw him the other day so be it and when her mind allows her to remember he's gone, go with that. Rather than lie maybe fib a little and simply say "I didn't think he looked well but it sure was nice to see him wasn't it?" or something to that affect. I wouldn't create stories about him being sick or getting better just interact as minimally as possible in the memories she's experiencing. This may be her mind protecting her as much as it may be her mind failing her and I don't see any benefit to challenging either reason on this one. When she goes on about how wrong it is for him to go before her, I would simply agree and not force any more conversation or worry about her seeming lack of emotion, again her mind is dealing with it the best way it can and I would just take her lead if I were you.

I can't imagine how difficult this must be for you, loosing your brother suddenly and having to navigate this major event for your mom while mourning yourself, I wish there were some words of wisdom I could offer but I just don't have them. Be sure to take time and care for yourself here too, this isn't all about Mom.
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Murphy18966 Jul 2019
Thank you so much. I am so thankful for the wonderful words!
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Hola.
Lo' siento,chica.(i said i am so SORRY) for your loss, that's so sad he passed on making the transition to RIP in heaven, much earlier than planned, so that is always very sad. I pray tonight for his eternal peace, with our heavenly father, Amen.

About madre(your mother)

two things:
#1.) If mom is asking you directly where is Steve et.al..,

i would say gently lovingly, "Steve is no longer physically with us mom."
-
But, he is at peace. God has taken him home. I would not lie at all about it."

However, i would also remind mi parent,

"'But, Steve is still here, living through u, and me mom and all who loved him, and still do!"Steve is living through us each blessful waking day, we are thinking about him, and all happy rememberance of our beloved steve, keep steve ALIVE mom. That's how i would tell her." God bless u and you will be blessed for taking great care of your beloved mom, during her stages of this ALZ/DEM etc., and may your beloved loving sibling continue RIP but is living through you all who clearly love and miss him. God bless your loving mom, your family...and always take time for you, even if just a brief moment. GOD BLESS YOU.

adios.
Buenas Noches.(Good night)
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Miadvocacy, that is a lovely way to deal with a death, however, people with dementia cannot fully comprehend and what happens if the mom now believes that Steve has possessed her body or someone else? Just saying, I wouldn't create any concepts that could turn out to be harmful or tormenting to anyone with out the mental capacity to full grasp the concept. No este bien, it's not good.

Buenas Dias! Good day!
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I would talk to my mother like the person was still alive. She knew what it meant when someone had died and I couldn't see any reason to upset her so I kept death away from her.
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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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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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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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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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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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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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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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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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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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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 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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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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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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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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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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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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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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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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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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