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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

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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imtheparentnow Jul 12, 2019
I can't even express how much I love this. I needed to see this, thank you for sharing.
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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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Reply to mollymoose
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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 15, 2019
Yes, and this works for her!
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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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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 9, 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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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 10, 2019
Thank you so much. I am so thankful for the wonderful words!
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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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Reply to Angelika1947
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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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Reply to Daisy9
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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 15, 2019
Your advice is spot on! Thank you.
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