Should we tell Grandma that HER mother is dying? Both have dementia.

4 answers | Last updated: Sep 14, 2017
A fellow caregiver asked...

Can she handle her mother's death???

Hi, my family is completely torn on this issue. My Grandmother has pretty advanced dementia. Her mother, who has been suffering from Alzheimer's for a number of years now, recently had a stroke and is not expected to recover. The doctor who is caring for her says there is absolutely nothing that they can do for her. I don't know much about her condition, or how much time she might have. I don't think anyone has told my grandmother that her mother is dying.

On the one hand, this is her mother... Anyone would want to know what was going on, and be able to pay their last respects. I know I would, even if I didn't understand what was going on.

On the other hand, she is suffering from advanced dementia. She was recently moved into a home for dementia patients because she wasn't very aware any more. She was wandering, getting lost, and doing other dangerous things that she would not have done if her reasoning had not been affected. She quickly becomes restless and often walks away from us when we take her places. She still has striking moments of clarity, but they are few and far between.

How involved should she be? Seeing her mother requires a weekend pass and a six hour drive. Which is cruel in this scenario? Denying her the last possible opportunity to see her mother alive? Or subjecting her to the death of her mother when she isn't exactly able to coherently understand it? We are all torn on this one.

Expert Answers

Mikol Davis, PhD has worked in community hospitals with geriatric patients suffering from dementia, depression, and other psychiatric problems. He has a doctorate in Psychology from the University of San Francisco and has been in private practice in Marin County, California. Davis co-founded with his wife, Carolyn Rosenblatt.

Should you tell your mom, with advanced dementia, that her mother is dying? It is not quite clear how advanced her dementia is, but assuming that she is not aware of what is going on around her, make your decision based on her state of mind, not yours. You said, "anyone would want to know what is gong on..." Yes, anyone with intact reasoning would want to know. A person who can no longer reason might not understand what is going on even if she were there right now.

The family members who are sure that your mom needs to visit her mother may be projecting their own thoughts into what they think your mom's would be. Does she have thoughts at this point? Test it out. Ask her if she knows where her mother is and what she thinks about her mom. If she can't give any answer, she may not be able to understand at all. Alzheimer's and other dementias steal away ability to think, make sense of the world and understand things like living and dying.

No one can make this decision for you, outside the family. I would weigh the pros and cons very carefully. How uncomfortable would your mom be on a 6 hour drive? What would it be like for her to be in yet another strange place when she arrived? Does she recognize you? Would she recognize her mother? If she doesn't know any of you anymore, or isn't quite sure who you are, it's likely that it would be the same for her with her mom. Ask the caregivers and her doctor for their advice about having mom make the trip. If they advise against it, there is a reason. Listen with an open mind.

If she goes, be sure it's for her real benefit, and not for the sake of the family who may not see how demented she is and can't see how incapable of understanding certain things she may be. If you decide not to take her, let go of your own guilt. In some ways the decision is driven by her illness and not by your thoughts about what you would want. I wish your family calmness in coming to a decision and peace among you at this doubly difficult time.

Community Answers

carolynga answered...

My mother died with dementia nearly a year ago. I lived with her as caregiver for nine years. There were many deaths in that time period - that I never told her about. Because I realized that she would take in the information at that moment - but would soon forget. A nurse once told me that each time that she'd have to be told this sad news - because she didn't remember being told previously - would be like hearing it for the first time.

I felt this was probably true because she never seemed to remember my father's death - which happened several years before she was diagnosed with AZ. In the early years, when she'd ask for him, I'd try to remind her that he had died several years prior. I even got so specific as to show her his death notices in the paper or his death certificate. But then she'd accuse me/the family of keeping this information from her...and tell us what awful people we were to treat her this way. This was truly heartbreaking, so I'd just tell her that PaPa had gone to town (they lived out in the country and he'd often take the car and go 'to town' to run errands, pay bills, etc.). After a while she stopped asking. But every now and then, years later, she'd call out his name at bedtime - tell him it's time to come to bed. They were were married 67 years when he died.

Before she passed, a number of her relatives and friends that she'd grown up with died, and so did one of her most protective sons. Soon after she passed, my sisters and nieces went to a nursing home where her first cousin was a patient, to tell her of our mother's passing. Cousin Mae had AZ as well...we spent about an hour visiting with her. She charmed us with the most delightful and cherry conversation - all about pound cake! Everyone was waiting for me to tell her - but I just couldn't. When we reminded her who we were "Carrie's daughters", she never asked how mom was doing. I think she knew why we were there. At any rate, I didn't have the heart to ruin her day. So I didn't tell. her. Mae died a few months later.

On the other hand...soon after my mother had a minor stroke, about a year before she died, she returned home from the hospital talking about things that had been discussed in her presence years before. She soon lost the connection. Which caused me to believe that AZ is not a condition where the victim does not take in and hold information, but a condition where they continue to take in information but are unable to access and process it in a normal way.

Bottomline, since she would not be able to recall the information for more than a few minutes, I felt it would be cruel to give my mother such heartbreaking news - that would make her sad temporarily then she'd forget.

Frena answered...

I'd suggest that if it's possible, without too much stress, you might take your grandmother to visit her Mom. As thinking people, we tend to get all hung-up about thinking and information, but really it's feeling that's at the center of this. And people with dementia can be right on with the feeling thing. I wouldn't worry about giving information as much as facilitating contact, if at all possible. You might be surprised at what people with dementia intuitively know. You could even try asking her, if someone you loved was very ill, would you want to know? See what she says, if anything. We treat people with dementia as if they'd somehow stopped being people. But they're only people with brain processing problems. They still have hearts, dreams, feelings, intuition. Never hurts to ask. Sometimes you get a really clear answer, other times not.

Newroses answered...

I have wondered about this same sort of thing for some time now. I have been caretaker of my Mom for almost 7 years now. She has been forgetful or more like scatter-brained for long before that. I know she has dementia but don't think it's AZ. Some of her dementia worsened at times from UTI's so we keep an eye out for that, but even so, she has good days and not so good days. Her mother died in the 80's, yet there are times she will ask if I've seen her mom lately, or say we should go visit 'Mama'. I have to tell her that grandma is not here any more and she has reacted differently at different times. I have always told her I would never lie to her, but after a few similar situations, (others that have died also) it seemed to be VERY bothersome to her, so I have talked with her whether she really wants me to tell her the truth, since she won't remember, or save her the grief. She says she wants the truth. So, I give it to her and simply comfort her the best I can at the time. She usually forgets after a short time. It is not easy to do this, and I may not be able to continue, but it IS what she wants (or says she does)She does ask about people sometimes and wants to go visit them and if we can't, I just tell her where they live and what is the latest I know about them - she forgets that too, but it is what she wants and that's what I try to do.