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
41 Answers
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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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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!
This video might help you: http://bit.ly/2XxaIzF
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?
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.
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