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My 90-year-old mother is declining in memory and cognition rapidly. She still lives in her own townhome, with aides and relatives coming in almost every day to help her.


Sometimes she is like her old self, but more and more she has not just memory lapses, but more like rewrites of events, where she revises what took place and who said what to her (I am often the bad guy in the rewrites as I am the primary caregiver). She remembers the basic events, but in her mind changes what happened.


When she was in rehab from a fall recently, I provided a written, dated summary to her frequently of what had taken place each day, as she was particularly tangled as to timeline and events. Should I continue to do that for other events that she is now changing about in her mind, and sometimes denying things she did that caused her problems, like she has been repeatedly unplugging her phone, then blames me or her aides for it not working? Or should I just fix the phone, and other things, and spare the argument?


I set up a private messaging system for close, helpful, relatives to know what really took place, and what to watch for, as she will unload all these suspicions and anger, often about me ‘bossing’ her, on them, and they have no other way to know what she’s saying didn’t really happen the way she is telling it.


That is helpful to me and the rest of us, but how much should I try to document for her? I say ‘document’ because she wants things written down, and has a calendar with her constantly. How much should I try to give her as information, and how much is just futile to try to straighten out and document for her, especially when the truth might portray her in a bad light to herself?

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You know, as I read these accounts, it should be crystal clear to anyone caring for a loved one with dementia that their stories are all the same. That observation alone should let us all know that we are a collective of shared experiences and we are not meant to be frustrated and forgotten martyrs. If, you do not choose to be a caring and understanding caregiver, then please pass it to someone who does or place your loved one in the care of others. If this is not possible, then please get help in learning how to be forgiving, patient, and caring because these skills will be tested.
I have had the wonderful experience of raising a son who was diagnosed throughout the years with the best guesses of professionals at that specific time in history. As a result, his diagnoses (and medications) have changed many times...ADD, ADHD, Mild Mental Retardation, Moderate Mental Retardation, Bipolar(!), and then, at the age of 27, after a 2-month stint in the hospital and complete loss of memory, a competent neurologist who worked with Alzheimer patients informed us that his frontal lobe was underdeveloped and he scored very high on the autism spectrum. At 36, he is now properly diagnosed and with his care and medications now correct, he is amazing. I tell you this for one reason only. I have cared for a confused, loving, angry, aggressive, sweet, violent and very special person for much of his life. It was my training!!

I have now been the primary care giver, in our home, for my 90 year old mother with rapidly deteriorating dementia. She moved here at the beginning of the pandemic from Washington state. The remainder of my family is in Oregon and Washington, which leaves my husband and I no respite.

What I have found, is that I have had so much training for this time in my life. It is like my son's development now going backwards! She requires the same intense patience and understanding. The same slow explanations, over, over, and over again. I knew right from the beginning that phrases like, "I told you that yesterday.", or "Don't you remember, I've showed you that." would not only begin to feel disrespectful to her, but would make her shut down and not ask questions. I know who stories are inaccurate. I know she makes things up, But so does everyone else. I email her updated progress and significant changes to others in the family. I DO NOT spend any time trying to correct things she says, I just keep everyone up to date. They know to listen to me, not Mom, and it keeps everyone in a loving and caring place.

I now understand that I am uniquely experienced and qualified to be her caregiver and will do my best. No, it is not always fun. Yes, there are days I wish that I was not the one. That is the reason I joined Aging Care yesterday. I know that just like all of you, I will need that extra support and your experiences to see me through days ahead.

My best to all of you on your challenging paths. Love them the best you can. Never ever hurt them, even with your words. They do not deserve it, and in the rare case that they do...you should not be their caregiver.
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gdaughter Feb 2021
wow. you are amazing....I don't think patience and tolerance can be taught to anyone...we all just do the best we can and some have more capacity than others. Bless you for being one of those...but love clearly goes a huge distance in these situations...your love for your child enabled you to hang in there and to learn a lesson well. Your last words have truly hit home with me so much I am going to write them down to remember them. I am reaching the breaking point with my own mother who is increasingly challenging and is 98, but also with my father who is going on 104 and is making himself a huge part of the problem and interferring with ways to deal with the most challenging of behaviors. My health has suffered to the point of emergency surgery and the surgeon and I had to laugh when he said the best thing I could do to help myself would be to keep my BP low. But laughter is good! And placing her would just increase a massive amount of stress. We all live together and my father thrives in taking care of his lawn,garden, going for walks, talking to neighbors. A placement for one or both would be financially devastating to all of us, a point which well-meaning people are ignorant of when they suggest it. I would also stress over finding the right place and worrying about the care. One day at a time....
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I understand this very well. My mother, has rewritten several stories of her life. My father was extremely abusive, but she says those beatings never happen. My brother has spent his life in prison, but she recalls him graduating from college, at the top of his class. I used to debate her and challenge her on her facts, in front of friends and family. It made her so angry and embarrassed. Then, one day, I said to myself, at 82 years old, why should I have to constantly remind her of her pains and life failures? At this age, she should be able to rewrite any story she wants to, as long as it makes her happy. Who cares! I knew the truth, but in her brain the truth was not reality. There are no life lessons to be learned for her at this age. So, I let her rewrite her life stories. May she die happy. 😊
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LeChelwelborn65 Feb 2021
Beautiful answer
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Speaking of writing things down minutely:

1. Your mother finds that her phone is not working.
2. This annoys her, because she wanted to make a call.
3. Being annoyed, she starts out on the wrong foot to solve the problem.
4. Unable to solve the problem, she becomes more frustrated.
5. Because she can't solve the problem, she assumes that somebody has done something to her phone to stop it working.

In none of this is her reaction actually unnatural or disproportionate.

All you have to consider is:
1. Her phone is not working when she wants to use it.
2. Is there any way to help her correct the problem that causes her phone not to work?

I like checklists myself, nice clear bright checklists on laminated paper. [The trouble is she's very unlikely to refer to it, but you never know - there could be a way or a place to display it...] e.g

**********************************************************
TO MAKE A CALL

1. Check the phone is plugged in.
2. Listen for dialling tone.
3. Dial the number.

WHEN YOU FINISH THE CALL

Press the red button on the key pad.
That's all.
You don't need to do anything else.

*********************************************

The general principle is this: that you do not need her acknowledgement of what has gone before. You don't have to make her see or agree that the problem was her own doing, and not someone else's mischief. Instead, you look for ways to make her routine mother-proof - yes, I know, good luck! - but at least it gives you a constructive approach to work with. And as for her complaints, acknowledge the problem (the phone didn't work), sympathise with her annoyance (that's a pity, I know you wanted to call Lily on her birthday), and then without comment do what you can to preempt a repeat of the issue.
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Mom145 Feb 2021
Countrymouse
Beautifully written for me...
What a blessing, Thank you
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Smile and go with the flow. You will never win an argument so it’s not worth it. I used to get inside her head and go with her. When she told me she had visited the White House recently (on a nursing home trip😀) I congratulated her and asked her questions about what she saw. We had a great time reliving her imaginary trip. She was happy and that’s what counts. My Mom passed away in October and I would give anything to hear one of those crazy stories again
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Relatives should be told--ONCE--that your mother now has dementia so severe that she remembers things correctly or incorrectly in an entirely random manner. Tell them that you don't really wish to have them calling you regarding every single rambling of hers; that if there is a CRUCIALLY IMPORTANT concern, you do keep a diary and would give them the real skivy on it, but that would be seldom and only in matters of extreme importance. As to your Mom it is a matter of "Mom I love you, but your memory is not what it once was. We don't need to argue these issues, and I don't intend to". Period. Full stop. And because she won't remember THAT, either, then you will have to repeat it.
As to what light people's renditions of any of this nonsense gets people painted in, really, who cares? Too unimportant to discuss given all the trials and tribulations that honestly DO matter.
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Goddatter Feb 2021
Valid points, all. Thank you. I’m past the feeling hurt by her complaining to others about me, largely due to the helpful support I found here. I share info at different levels on a need-to-know basis - her grandkids don’t need all the details, better to keep their happy memories of her intact. The ones who are actively helping need to know more details and events. My husband suggested I keep a log/diary of events and general impressions of how she is doing. It is turning out to be valuable.
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I would recommend keeping a journal for yourself, if she is casting you as the 'bad guy,' just so you have a record of what is happening. Humor her if she wants to keep a calendar - you can put her doctor appointments and other things in it. But don't try to get her to change or understand why she is wrong about things she is saying. With the phone, just fix it, as needed. She sounds like she has gotten to the state where she is no longer learning. It is not unusual for personality changes to occur with dementia. At first, the changes are usually confusion, lack of judgment, going through the same loop in her mind, accusing people of stealing when they have misplaced things, etc. When my mother's mind was declining one of the aides in her facility tried to leave notes all over her bathroom about how to dispose of things, but it never worked. It sounds like she should have aides with her every day. Don't forget that her condition is likely to decline. At some point you may have to elder-proof her home so that she can't do things that would put her in danger.
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You can talk to her until the cows come home and this is not going to change - she has dementia, is old, and will not absorb anything. Direct the conversations if they get out of control. Do not play into her antics. If it gets really bad and she creates a scene, excuse yourself and leave. Don't try to fix what can't be fixed. It won't work.
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She's rewriting history to fit her narrative. My mother des the same exact thing with me and always has since I was a little kid. You being portrayed as the "bad guy" in her story has probably been going on for a very long time. Long before she ever had a moment of cognitive decline. You've probably been the family scapegoat for many years like I have.
If you're able to, just fix things like the phone and spare yourself the exhausting and useless arguments. That's a classic narcissist who can't possibly accept that something could also be their fault.
Then tell her that if she thinks you're "bossing" her and is going to tell anyone who will listen how terrible and insufferable you are, that it would be best for both of you if you no longer help her. Then stick to it. Tell your family members what's going on and refuse to help her with anything for a while. If you still want to continue doing for her then it has to be on your terms, not hers.
The minute she calls and starts complaining to you about her home aides or instigating something with you, hang up on her. If you're at her place and she starts up walk away.
This is the only way you will be able to maintain your own sanity in the caregiving situation. This is what I have to do with my mother and unfortunately for me we're in the same house. When she starts about someone taking some item of hers that she misplaced, or starts instigating something because she wants a fight, I walk away and completely ignore her. I refuse to play that game. I will not jump to attention because she wants something either, and I make her do for herself in the ways she's still able to. Whether she likes it or not. You should try some of this tough love in your situation too.
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NavyVet90 Feb 2021
Bingo! NPD is one of the worst among personality disorders. A lot of their deplorable behaviors and way of thinking are actually not that different from sociopathy. My raging narc father didn't even have the excuse of dementia. It took me a lifetime of biting my tongue, walking on eggshells around him so not to upset my mother. Then she died first and I had several epiphanies and finally walked out of the F.O.G. My patience was done. From that moment on, I stopped putting up with his abuse. I'd walk out when he started in on his conspiracy theories, lies and screaming and swearing at me in TWO languages. I ended up having to block his phone and dealing with everything from a distance through the ALF staff. Went from very low contact to NO direct contact 2 months before Covid broke out. I made sure he was well taken care of and I have no guilt whatsoever. I went above and beyond what most people would have put up with. It almost killed me - my health is still a mess. Although he's been gone since May, I'm still trying to recover from all the anger and resentment of being the scapegoat and getting stuck with toxic, difficult parents. The Golden Child siblings will never understand that. Out of sight, out of mind. They had it so easy, but then life is rarely fair.
One of my favorite stories about him: Every so often, people (at either the ALF, rehab, hospital, etc.) would come up to me and say "Oh your father is such a WWII hero. I didn't know he was a Holocaust survivor!" I would burst out laughing and tell them "Um, no. He has never been to a concentration camp and he's not even Jewish." He would say anything that would get him sympathy/attention/accolades. The only charitable things he did throughout his life was when he would get public recognition, pats on the back, and could act like a big shot. We always knew when he was lying, could never keep his stories straight. I could fill a book! LOL
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Oh yes, Mom kept hiding her "valuable" from the staff and other residents. A search of her room always turned up the missing item. And she complained endlessly that her phone was broken, she just got confused on how to use it. The tales go on.

I always just said "maybe you just forgot where you put it" and started to search for the thing. Then we would laugh at where she had stuck it. No use in pointing out her error, I didn’t want her to feel bad.

Although after she had accuses the staff of taking things I brought the director back to help look. I warned Mom that accusing a staff member was very serious and might get someone fired. She stopped doing it after that.
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Lilfarmer67 Feb 2021
I can relate to this. Everyday, my FIL complains something is broken (when he couldn’t figure out how to use it) or something is missing (usually right on his nightstand).

He acts genuinely surprised when we get something working or find the missing object.

We haven’t gotten to the blaming us part yet, but I know it’s coming.
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Idk but in my situation I just grin and don’t let it bother you. Enjoy the times she’s “really there”. And offer a treat when she starts thinking you’re the bad guy. That’s just my opinion. Works for me. I’m sorry , I know how hurtful that is when you’ve been the one there for her. Good luck best wishes
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