My elderly mom, who has dementia, asks everyday, several times a day, about who is alive and who is dead. Is this common with Alzheimers? How do you respond?
I think a lot of elderly people, not just those with dementia, are pretty obsessed with death. My MIL did not have dementia but she had taken care of her husband who had Alzheimer's for 11 years before his death. When going through her papers after she died, I found many notebooks full of everything from what happened each day (like, today I put the garbage out, etc.) to her thoughts on political matters, to unresolved conflicts from her childhood. A recurring theme was the listing of her relatives and their dates of death. She wrote down the dates of death of all her close relatives, dozens of times. My husband's theory is that she was fearful of forgetting things like that (as her husband had forgotten things as his condition worsened).
If your mother is in the early stages of dementia, she may just be trying to keep it all straight and make sure she remembers things. I'm sure you will realize it as time goes on if she slips back into a different reality and doesn't "know" that people have passed on; or if she becomes upset at hearing that someone has died, as if it were "new news". Then it will be time for gentle redirection of the conversation or going along with her reality, if she is asking about someone as though they are still alive. There are instances of people becoming very upset every time they hear a loved one is dead, like every time is the first time hearing it. It doesn't seem to serve anyone's interest to have them in so much distress all the time.
Reading all these responses makes me curious. My mom asks about all kinds of people, living and dead right now. She even asks about her third husband which she never had! So far, I respond honestly to her and she doesn't get upset so I figure it's best to tell the truth until the truth harms her peace of mind, then I will lie. I use the opportunity to remember stories about the people she asks about, or to invite her to tell me what she remembers about the people I never knew.
It kind of sounds like to me that as dementia progresses, LOs live more and more in the world of the dead, like they ask more frequently about dead people. Is that actually the case or is that more of a difference in how dementia manifests itself differently in different people? I can see how constantly having to address the questions about dead people would be extremely wearing on caregivers.
You ma not like this, but lie. Everybody is alive and well. Just at “work”, “school”, “out for a bit” whatever. They’ll be by “later on” or for the “holiday” or whatever seems appropriate for the person she’s asking about.
When you tell someone with Alz that a loved is dead and been dead for yrs, they will grieve all over again. It’ll be like they’ve first heard it. EVERYTIME. It could be numerous times per day. That’s an awful lot of undue stress to give them.
Just fib to keep the peace and keep them happy for the short time they have left.
I told my mom the truth when she asked "What is wrong with me?!" and she'd be distraught about the fact that she knew something was wrong with her. (So heartbreaking.) I'd gently tell her about dementia and that I was there to help her through it. She understood.
To specifically answer your question, I would tell her the truth once and see how she reacted.
If she had the reaction of "that's too bad", I'd answer honestly each time. If her reaction was traumatized or upset by the news, each time after I'd give her a white lie about that person. In my view, it's cruel to heap such trauma repeatedly just because her dementia/Alzheimer's compels her to ask repeatedly.
It's very easy. My mother has dementia and ask and/or talks about dead people all the time. I am just very upfront with her in that I always say either they are dead or living. She may ask the question again but continue to tell the truth. They don't remember and it's not there fault. It's something you have to get use to. I have done much reading on this disease and it can be much worst so consider yourself lucky. They tend to remember old things that you may or may not know about so just agree and continue if you don't know. If it's something you can to talk about, dig in. They tend to enjoy conversation on their terms, so just go with the flow.
Enjoy your parents no matter what stage they are in cause when they leave, boy does it hurt.
Love on them and try to keep them happy while you can.
Omg be thankful she asks who is dead and who is alive. That’s my thoughts. My mum pretty much lives with the dead and that is even more frustrating. She continuously for the whole day talks about my grandparents, my late brother and my 2 late uncles. They are all dead but she insists she is conversing with them. Planning, talking etc. she even says I should have come with her (sounding disappointed in me). I’m not coping with this. Coz it’s all grief and sad memories.
If she asks about a specific person, talk about your good memories of that person. It may not really matter if they are alive or dead--you can answer truthfully either way, but she probably won't remember.
The memories and the relationships are more important than the alive/dead status.
First, preoccupation with various "life" matters occurs in dementia due to their thoughts continually circulating with no closed cognition thoughts. Death, births, and even sex - our basic functions become prominent.
Unfortunately, no matter how you respond it will be forgotten again shortly.
That is why caregiving for those with dementia puts such a strain on the caregiver. It is very similar to dealing with a two year old who continually asks questions over and over.
The is nothing you can do about it. Exceptions to this could occur if the person becomes extremely upset if you share someone is dead. Then, you may need to lie to avoid that scenario.
I’m at a stage with my Mum where I’d have to be lying 24/7 and literally feel like if I were to lie, I’d be living an alternate reality myself so there’s only so far I will go before I blurt out DEAD! DEAD and DEAD! Mum talks of nothing but dead people and it’s really eating me up! She talks of them as if they are right here with us.
It depends where in the dementia journey your LO is , In the first few years of my Mom's current 8 year battle, she would often ask about her parents and "him" sometimes meaning my Dad and sometimes meaning her partner of 20 years. I learned early to deflect - answering - I have not seen /spoken to them in a while, when I do I will tell them you said hi- and then moving on. I promised her I would never lie, a promise is wish I had not made as I did end up having to tell fibletts. I best answer now may not be necessary later. Mom has progressed to the part now where she rarely asks about anyone and in fact can not make a coherent sentence. Heartbreaking but less stressful than the constant repeated questions. My go to resources are Teepa Snow and The 36 Hour Day ( a comprehensive stage by stage guide). Good luck, it does not stop hurting, but over time it becomes less frightening to navigate.
My husband, who has vascular dementia, has asked many times about his parents. They both died many years ago. When we told him that they had passed away, he was very upset and wanted to know why no one told him. He has forgotten all of the important milestones in our life. I framed a picture of his mom and dad. The picture is where he can see it daily and it has somewhat comforted him. He still asks about his parents, but I think he realizes that they have passed away. Dementia is such a cruel disease.
In the early stages, my Dad and me both went to funerals. But once he became advanced, he lost a sister that lived in another state and since they seldom kept up, we kept it from him. Nothing to be gained by telling him. It depends on how it makes him feel. Once my Dad wanted to know where his parents were, and I said they died 30 years ago and he cried like a baby. It is so hard. tell her someone and see how she reacts. In later stages, there is no good reason to tell them.
I usually just say they are on a trip or at work. There’s no reason to upset the LO. They live a lot in the past. So I just let it be as they remember it.
People with dementia who keep asking the same questions over and over again, indicates that the brain connections with the outside world are permanently cut. The answers to repeated questions those people ask, are irrelevant. Your truthful o false answers won't penetrate their damaged mind.The answers you give them will make no difference and the repeated questions will continue.There seems to be a reluctance in the part of some care-givers to accept that the demented relative has a permanently disconnected, non-functional brain. They are practically dead people who still breath and move. They do not interact with the outside world anymore. Love, affection, compassion, devotion, etc. etc, never reach them and will produce no effect one way or another. It's sad but its the crude reality.
Thanks for this. My mom has been declining for several years. She's extremely close to my daughter, her only living granddaughter. They talk fairly often. But last time I saw my mom, she asked me if my daughter was married, and if she had graduated from college, and what she did for a living, and where she lives now. She was at her graduation - 8 years ago! She knows/has been told all these answers repeatedly. Now we just let her ask, answer simply, and wait for her to ask again within a short time, sometimes minutes. SO SAD to watch.
Yes in one form or another I think it’s very common. When my mom asks matter-of-factly if someone is dead I answer truthfully the same way. When she wakes up from a nap or a nights sleep in a different time and place talking about someone who has passed as though they are alive (usually her mother) I meet her where she is, I don’t lie but I’m not brutally direct, I kind of tiptoe around and help her back to current reality, often with stories and memories of the past, until she either asks directly or figures it out herself and kind of drops it. So far this has worked well and I am able to find positives for her and for me I guess. She also has visitors sometimes, not people she knows, strangers and rather than react with the shock and dread it originally gave me for some reason I was able to hold it together and ask if “she” (its always a woman) frightened her at all and if they talked to each other. Both answers were a no and now that I’m more accustomed to it I encourage her to engage this visitor as we talk it through and Mom usually figures out it was a hallucination.
Im always thrown by how matter-of-fact Mom can be about the truth sometimes, I still worry that it’s going to be hard for her to hear the answer to some of her questions, like is Ma (my grandmother) dead but as long as I let her ask she seems to take the answers in stride. With my mom so far this is different from the repetitive questions we get or the “I never knew that” or “no one ever told me that” when it’s something we just spent a half hour going over or are talking about for the umpteenth time. Similar to every time we take her somewhere and we drive through the neighborhood she grew up in it’s like she’s seeing the changes for the first time, it’s like a kid seeing Disney World and actually if I let my guard down it’s enjoyable to be a part of each and every time. Our mothers are probably in different places as far as their diseases but the unemotional questions I feel come from their attempt to make sense of their world. They know things are out of place in their minds, meaning they can still reason and remember, I can only imagine how scary that might be but from my experience they ask because they are ready for and need the information so I would simply answer the question with as little emotion as possible but not offer the answer unless asked directly. I’m not saying it’s easy, especially emotionally, it’s very hard on me sometimes anyway but testing the waters and feeling out when and what types of answers work best for you and your mom is what I would recommend.
I love your answer. My dad could take matter of fact answers, but when he would wake and his brain was also waking up and he was thinking about his dead parents as if they were in the other room, I'd make a quick comment, meeting him where he was at the time, and say they've gone out. And walk out of the room. 10 minutes later, we'd be watching television.
I would tell my Mom when she would ask how her mother was, that she was doing well and go on about things she was doing. Same for anyone else she asked about that had passed away. It seemed to make her happy.
Depends on the person. When my mom asks I tell her the truth in simple words so that she will continue to trust me. You have to know your LO and what will be best for him or her.
I often take the question as a cue to talk about that person and show her pictures. Remembering loving relationships and special occasions can be very life affirming.
I also remind her daily of all of her grandchildren and great grandchildren, and talk about when they will come to visit. With enough repetition she can focus on future events and stays positive.
The simple answer as mentioned by others is "therapeutic lying" where you answer without using the term died. There are many ways to tell the truth without directly answering the question.
"I am not sure, last I heard they were living in a nice place though." If she is aware they had been sick, then possibly... "yes I remember she had some issues but haven't had any updates." Maybe you can ask her about special memories of those who have died. If a conversation is possible, it may stimulate her mind or at least help her feel valued.
For those who are alive you could tell the truth and try to actually engage her in a conversation and maybe she won't dwell on the ones who have died.
You may want to have some "go to" responses because it will come up more and more. If she seems to remember your answer it might help to try and be consistent or have similar answers if she pushes for more info.
I agree with @lealonnie1 entire response. Everyone is alive and life is good. Every now and then my 95 year old mother would remember that she missed my dad. I would only say we’ll all be together again soon. She did nit, nor did I use the word dead or died. Mom forget our daughter got married and would be upset we didn’t tell her. My response was “oh don’t worry, you were at the wedding and had a great time.” She would be happy again and say “Thanks fir bringing me!” Just plat along. It’s not lying; it’s therapeutic for an I’ll patient.
I just tell my wife the truth. Every day she goes to bed and says her prayers then gets back up and asks me if her brother is dead. I explain he is fine and so are all her siblings This seemed to be triggered by multiple deaths and funerals close to us in the recent months. My hope is that this will subside in time. I do expect another behavior to replace it. Now that she realizes that her reality isn’t always right, she has lost her confidence and relies on me more to help her know what is true. Subject matter aside, it will always be something, and be repetitive. She can still read and write so her note pad is always full of reminders I can see the struggle within her. I am thankful that she hasn’t given up and is still asking. I remind myself after answering her for the thousandth time, that someday she will loose her ability to question, to ask , to communicate. Then I cry, and thank God for what I have left of her today, and answer for that 1001th time.
I answer truthfully and don't dwell on the subject . My Dad will say " That Beatle died . " and I will say " yes that happened awhile ago . " One day he asked me if My brother died and I said " Yes " I do not bring up anniversaries Like " Mom has been dead for 5 years " or " Craig Has been dead 14 years . " If he asks I answer truthfully but I don't bring up the topic . he will say " I have gotten really Old . " and I will say " People are living to 95 and 100 Now a days . "
It's never a good idea to tell an elderly person with dementia 'the truth' when the truth is going to traumatize them; it's that simple. If you use THAT math, then you come up with a story as to 'who's alive and who's dead'. Nobody's dead; they're all busy or living elsewhere or unavailable to speak on the phone at the moment.
As far as "As a matter of fact, people with dementia probably wouldn't care about what happened to other people.", of COURSE they care or they would not be asking! This statement of pure fabrication (rather than 'fact') is giving demented folks no credit for having ANY feelings or ANY brain matter left at all, which is insulting and cruel, in my opinion. My mother, when she had advanced dementia, was absolutely obsessed with asking about where her mama & papa were, and where her siblings were *who were all deceased* so I was constantly making up therapeutic fibs about where they were, and 'dead' wasn't among them. That would have greatly upset her and each time she heard they were dead, she'd have relived the trauma again & again. So mama and papa were living in Florida where it was warm, and her siblings were all living in NY and couldn't visit b/c it was too far away from Colo and they couldn't fly due to old age.
Get creative. And learn all you can about Alzheimer's so you are able to deal with your mom to the best of your ability. I suggest you read this 33 page booklet (which is a free download) which has THE best information ever about managing dementia and what to expect:
Understanding the Dementia Experience, by Jennifer Ghent-Fuller https://www.smashwords.com/books/view/210580
Here is a list of useful tips from her e-book I found to be excellent:
The “Dont's”
· Do not reason and argue · Do not demand that they reason or problem-solve · Do not demand that they remember · Do not demand that they get their facts straight · Do not correct their ideas or scold them · Do not reorient them · Do not think that they are being uncooperative on purpose · Do not think that they really do remember, but are pretending not to · Do not use a “bossy” dictatorial attitude in care · Do not act with impatience
The "Do's"
· Enter into their frame of reality, or their 'world' · Be aware of their mood or state of mind · Use few words and simple phrases · OR use no words, just friendly gestures and simple motions · Do everything slowly · Approach from the front · Wait for a slow response · Constantly reassure them that everything is 'OK' · Keep people with dementia comfortable 'in the moment' - every moment · Maximize use of remaining abilities · Limit TV or radio programs which they may feel are frighteningly real · Maintain privacy · Provide a safe physical environment
Language Needs
· Use short words · Use clear and simple sentences · Speak slowly and calmly · Questions should ask for a “yes” or “no” answer · Talk about one thing at a time · Talk about concrete things; not abstract ideas · Use common phrases · Always say what you are doing · If they repeat their question, repeat your answer as you did the first time · Give them a longer time to process information · Wait patiently for a response · Be accepting of inappropriate answers and nonsense words · Speak softly, soothingly and gently
When a person's dementia has progressed to the point where they're asking the same question over and over again, it's best to not be truthful. If they aren't remembering the people in their life who have died, every time you tell them they're hearing it for the first time. Then they get upset and often that upset can set them back and disrupt their daily routine for days. It's best just to say things like, 'remember (so and so) moved awhile back?' Or 'So and so got a different job so they can't visit as much'. There's no point in upsetting someone with advancing dementia by telling them the truth about a death that they will forget a minute later.
I believe that asking who is dead and who is still living, is a very common and appropriate concern in all old people. As a matter of fact, people with dementia probably wouldn't care about what happened to other people. As people age, all the other people they know, also age, even some have already started to die, like relatives, friends, acquaintances, celebrities and other contemporaries. It's like people in their 20's wondering if so and so has gotten married yet.
Tell her the truth. She cannot remember who is alive and who is dead day to day. It is information she wants. So give it to her. Yes, it is common and in fact even for those elders NOT demented it becomes who is going down the halls on the stretcher, who the ambulance is at the facility to pick up and etc. It becomes the gossip of the day in a lot of elder communities. They are all on a personal relationship with death.
If your mother is in the early stages of dementia, she may just be trying to keep it all straight and make sure she remembers things. I'm sure you will realize it as time goes on if she slips back into a different reality and doesn't "know" that people have passed on; or if she becomes upset at hearing that someone has died, as if it were "new news". Then it will be time for gentle redirection of the conversation or going along with her reality, if she is asking about someone as though they are still alive. There are instances of people becoming very upset every time they hear a loved one is dead, like every time is the first time hearing it. It doesn't seem to serve anyone's interest to have them in so much distress all the time.
It kind of sounds like to me that as dementia progresses, LOs live more and more in the world of the dead, like they ask more frequently about dead people. Is that actually the case or is that more of a difference in how dementia manifests itself differently in different people? I can see how constantly having to address the questions about dead people would be extremely wearing on caregivers.
When you tell someone with Alz that a loved is dead and been dead for yrs, they will grieve all over again. It’ll be like they’ve first heard it. EVERYTIME. It could be numerous times per day. That’s an awful lot of undue stress to give them.
Just fib to keep the peace and keep them happy for the short time they have left.
To specifically answer your question, I would tell her the truth once and see how she reacted.
If she had the reaction of "that's too bad", I'd answer honestly each time. If her reaction was traumatized or upset by the news, each time after I'd give her a white lie about that person. In my view, it's cruel to heap such trauma repeatedly just because her dementia/Alzheimer's compels her to ask repeatedly.
It's something you have to get use to. I have done much reading on this disease and it can be much worst so consider yourself lucky. They tend to remember old things that you may or may not know about so just agree and continue if you don't know. If it's something you can to talk about, dig in. They tend to enjoy conversation on their terms, so just go with the flow.
Enjoy your parents no matter what stage they are in cause when they leave, boy does it hurt.
Love on them and try to keep them happy while you can.
Love on them and try to keep them happy while you can.”
——
i love your words!
:)
The memories and the relationships are more important than the alive/dead status.
Unfortunately, no matter how you respond it will be forgotten again shortly.
That is why caregiving for those with dementia puts such a strain on the caregiver. It is very similar to dealing with a two year old who continually asks questions over and over.
The is nothing you can do about it. Exceptions to this could occur if the person becomes extremely upset if you share someone is dead. Then, you may need to lie to avoid that scenario.
It depends on how it makes him feel. Once my Dad wanted to know where his parents were, and I said they died 30 years ago and he cried like a baby. It is so hard.
tell her someone and see how she reacts. In later stages, there is no good reason to tell them.
Im always thrown by how matter-of-fact Mom can be about the truth sometimes, I still worry that it’s going to be hard for her to hear the answer to some of her questions, like is Ma (my grandmother) dead but as long as I let her ask she seems to take the answers in stride. With my mom so far this is different from the repetitive questions we get or the “I never knew that” or “no one ever told me that” when it’s something we just spent a half hour going over or are talking about for the umpteenth time. Similar to every time we take her somewhere and we drive through the neighborhood she grew up in it’s like she’s seeing the changes for the first time, it’s like a kid seeing Disney World and actually if I let my guard down it’s enjoyable to be a part of each and every time. Our mothers are probably in different places as far as their diseases but the unemotional questions I feel come from their attempt to make sense of their world. They know things are out of place in their minds, meaning they can still reason and remember, I can only imagine how scary that might be but from my experience they ask because they are ready for and need the information so I would simply answer the question with as little emotion as possible but not offer the answer unless asked directly. I’m not saying it’s easy, especially emotionally, it’s very hard on me sometimes anyway but testing the waters and feeling out when and what types of answers work best for you and your mom is what I would recommend.
I often take the question as a cue to talk about that person and show her pictures. Remembering loving relationships and special occasions can be very life affirming.
I also remind her daily of all of her grandchildren and great grandchildren, and talk about when they will come to visit. With enough repetition she can focus on future events and stays positive.
"I am not sure, last I heard they were living in a nice place though." If she is aware they had been sick, then possibly... "yes I remember she had some issues but haven't had any updates." Maybe you can ask her about special memories of those who have died. If a conversation is possible, it may stimulate her mind or at least help her feel valued.
For those who are alive you could tell the truth and try to actually engage her in a conversation and maybe she won't dwell on the ones who have died.
You may want to have some "go to" responses because it will come up more and more. If she seems to remember your answer it might help to try and be consistent or have similar answers if she pushes for more info.
Mom forget our daughter got married and would be upset we didn’t tell her. My response was “oh don’t worry, you were at the wedding and had a great time.” She would be happy again and say “Thanks fir bringing me!”
Just plat along. It’s not lying; it’s therapeutic for an I’ll patient.
This seemed to be triggered by multiple deaths and funerals close to us in the recent months. My hope is that this will subside in time. I do expect another behavior to replace it.
Now that she realizes that her reality isn’t always right, she has lost her confidence and relies on me more to
help her know what is true.
Subject matter aside, it will always be something, and be repetitive.
She can still read and write so her note pad is always full of reminders
I can see the struggle within her.
I am thankful that she hasn’t given up and is still asking. I remind myself after answering her for the thousandth time, that someday she will loose her ability to question, to ask , to communicate. Then I cry, and thank God for what I have left of her today, and answer for that 1001th time.
As far as "As a matter of fact, people with dementia probably wouldn't care about what happened to other people.", of COURSE they care or they would not be asking! This statement of pure fabrication (rather than 'fact') is giving demented folks no credit for having ANY feelings or ANY brain matter left at all, which is insulting and cruel, in my opinion. My mother, when she had advanced dementia, was absolutely obsessed with asking about where her mama & papa were, and where her siblings were *who were all deceased* so I was constantly making up therapeutic fibs about where they were, and 'dead' wasn't among them. That would have greatly upset her and each time she heard they were dead, she'd have relived the trauma again & again. So mama and papa were living in Florida where it was warm, and her siblings were all living in NY and couldn't visit b/c it was too far away from Colo and they couldn't fly due to old age.
Get creative. And learn all you can about Alzheimer's so you are able to deal with your mom to the best of your ability. I suggest you read this 33 page booklet (which is a free download) which has THE best information ever about managing dementia and what to expect:
Understanding the Dementia Experience, by Jennifer Ghent-Fuller
https://www.smashwords.com/books/view/210580
Here is a list of useful tips from her e-book I found to be excellent:
The “Dont's”
· Do not reason and argue
· Do not demand that they reason or problem-solve
· Do not demand that they remember
· Do not demand that they get their facts straight
· Do not correct their ideas or scold them
· Do not reorient them
· Do not think that they are being uncooperative on purpose
· Do not think that they really do remember, but are pretending not to
· Do not use a “bossy” dictatorial attitude in care
· Do not act with impatience
The "Do's"
· Enter into their frame of reality, or their 'world'
· Be aware of their mood or state of mind
· Use few words and simple phrases
· OR use no words, just friendly gestures and simple motions
· Do everything slowly
· Approach from the front
· Wait for a slow response
· Constantly reassure them that everything is 'OK'
· Keep people with dementia comfortable 'in the moment' - every moment
· Maximize use of remaining abilities
· Limit TV or radio programs which they may feel are frighteningly real
· Maintain privacy
· Provide a safe physical environment
Language Needs
· Use short words
· Use clear and simple sentences
· Speak slowly and calmly
· Questions should ask for a “yes” or “no” answer
· Talk about one thing at a time
· Talk about concrete things; not abstract ideas
· Use common phrases
· Always say what you are doing
· If they repeat their question, repeat your answer as you did the first time · Give them a longer time to process information
· Wait patiently for a response
· Be accepting of inappropriate answers and nonsense words
· Speak softly, soothingly and gently
Best of luck!
If they aren't remembering the people in their life who have died, every time you tell them they're hearing it for the first time. Then they get upset and often that upset can set them back and disrupt their daily routine for days.
It's best just to say things like, 'remember (so and so) moved awhile back?' Or 'So and so got a different job so they can't visit as much'.
There's no point in upsetting someone with advancing dementia by telling them the truth about a death that they will forget a minute later.