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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?
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
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.
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.
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.
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.
I say whatever brings comfort to my OL. If she says “Is my sister Alice still living?” I say “I haven’t heard from her recently” or “Why do you ask”? or whatever I think can get her painlessly through her thoughts and into a new topic.
You might be able to move to “She made the BEST BROWNIES” or “I’ll never forget the games we send to play together” and get her away from the birth/death distinctions with memories based thoughts of those who have departed.
It is common for this to happen, and I am grateful to be able to say that my LO hasn’t suffered emotionally from her losses since her dementia took hold of her.
What counts to your LO is that YOU are her current source of security and comfort and safety.
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.
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.
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.
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.
By proceeding, I agree that I understand the following disclosures:
I. How We Work in Washington.
Based on your preferences, we provide you with information about one or more of our contracted senior living providers ("Participating Communities") and provide your Senior Living Care Information to Participating Communities. The Participating Communities may contact you directly regarding their services.
APFM does not endorse or recommend any provider. It is your sole responsibility to select the appropriate care for yourself or your loved one. We work with both you and the Participating Communities in your search. We do not permit our Advisors to have an ownership interest in Participating Communities.
II. How We Are Paid.
We do not charge you any fee – we are paid by the Participating Communities. Some Participating Communities pay us a percentage of the first month's standard rate for the rent and care services you select. We invoice these fees after the senior moves in.
III. When We Tour.
APFM tours certain Participating Communities in Washington (typically more in metropolitan areas than in rural areas.) During the 12 month period prior to December 31, 2017, we toured 86.2% of Participating Communities with capacity for 20 or more residents.
IV. No Obligation or Commitment.
You have no obligation to use or to continue to use our services. Because you pay no fee to us, you will never need to ask for a refund.
V. Complaints.
Please contact our Family Feedback Line at (866) 584-7340 or ConsumerFeedback@aplaceformom.com to report any complaint. Consumers have many avenues to address a dispute with any referral service company, including the right to file a complaint with the Attorney General's office at: Consumer Protection Division, 800 5th Avenue, Ste. 2000, Seattle, 98104 or 800-551-4636.
VI. No Waiver of Your Rights.
APFM does not (and may not) require or even ask consumers seeking senior housing or care services in Washington State to sign waivers of liability for losses of personal property or injury or to sign waivers of any rights established under law.
I agree that:
A.
I authorize A Place For Mom ("APFM") to collect certain personal and contact detail information, as well as relevant health care information about me or from me about the senior family member or relative I am assisting ("Senior Living Care Information").
B.
APFM may provide information to me electronically. My electronic signature on agreements and documents has the same effect as if I signed them in ink.
C.
APFM may send all communications to me electronically via e-mail or by access to an APFM web site.
D.
If I want a paper copy, I can print a copy of the Disclosures or download the Disclosures for my records.
E.
This E-Sign Acknowledgement and Authorization applies to these Disclosures and all future Disclosures related to APFM's services, unless I revoke my authorization. You may revoke this authorization in writing at any time (except where we have already disclosed information before receiving your revocation.) This authorization will expire after one year.
F.
You consent to APFM's reaching out to you using a phone system than can auto-dial numbers (we miss rotary phones, too!), but this consent is not required to use our service.
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!
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 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.
You might be able to move to “She made the BEST BROWNIES” or “I’ll never forget the games we send to play together” and get her away from the birth/death distinctions with memories based thoughts of those who have departed.
It is common for this to happen, and I am grateful to be able to say that my LO hasn’t suffered emotionally from her losses since her dementia took hold of her.
What counts to your LO is that YOU are her current source of security and comfort and safety.
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.
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.
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.
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