Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:My mother lied in the earlier stages to try to hide her capacity. Overstating what she could do, blaming others for things to cover up her forgetfulness, etc. It was an effort to facilitate her own denial and stress and in some areas she believed her own lies (ie insisting my dad or I changed computer settings and passwords instead of admitting she could not remember how to use it).

This is what I've mostly seen as well. A friend of mine's parents are still at home but declining rapidly. She does everything for them. Goes to their home every day, gets all their groceries, medications, drives them to bridge, dr appts etc. Her mom is telling other people that the children are basically neglectful. They do their own groceries. She goes for a walk every day. Calls their own plumbers/etc. None of this is true. She told a family member this who relayed it to my friend, obviously concerned since she also knew this wasn't true. It really really hurt my friend. She is giving up 75% of her life for them and they are so mean to her and tell everyone how neglectful she is!

I lived this with my mother and it really did in my health. It's amazing how people who who have known you your whole life will believe a woman in her 80s who has been a diva a whole life. My advice to your friend is if there is money outsource a care manager and lots of things. I waited until total burn out and my own illness to do this and by that time I could not listed to another lie or complaint or anger outburst from my mother. I could listen to another doctor or read anything about it. If I didn't have a husband and kids I cared deeply about I wanted to jump off a roof rather than have more years of this. There is a lot of turnover, but even at her worst with them she behaves far better for strangers than she ever did for me. Just seeing me, she still gets an evil glimmer in her eye and wants to blame me for everything and yell.

I'm sorry <3 It's really rough. I feel like she would say the same thing. It's an awful awful situation. And to have people glibly crying "it's not mean!" "theyre not lying!" while discounting other peoples lived experiences is quite nasty.

It's not gaslighting, it's reframing in a way that can make it a lot easier to deal with (or, really, not deal with -- you can't fix this, you can't even make it better, so just do what you can and get out). Your parents aren't aware of facts but telling you something different: They genuinely do not know what's going on. Someone's personality doesn't change from sweet and appreciative to hostile and accusatory because they have suddenly discovered pleasure in being a biotech: They don't know what's going on and the narrative they've come up with makes sense to them. The more you try to make them aware of facts, the more frustrated they get, and the more they'll take it out on you.

I'm surprised that a PP's mother actually accepts the written documents from her doctors saying she shouldn't drive any longer. My mom would have said she'd never seen them before and spun a nonsensical conspiracy before she'd ever acknowledge that maybe she just didn't remember.

Did you ever take lifeguard classes? I remember being told that when you get close enough to a drowning person, you have to be careful because in their desperation, they will push you under in their efforts to get their heads above water. It makes no sense -- you're there to save them -- but all they can think of is how to breathe.

This is not always true. My mother told me my sister had not visited and I said “Mom, she was just there yesterday; I spoke with both of you on the phone”. Her next statement was “Oh, yeah, I wasn’t in a very good mood”, which was actually the truth.

We were told by a neurologist after my father’s stroke, that his personality could change and he could become a lot more difficult. And that dementia can make people mean. That does not make things easy on the family members, whether or not the person can’t help it.

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:My mother lied in the earlier stages to try to hide her capacity. Overstating what she could do, blaming others for things to cover up her forgetfulness, etc. It was an effort to facilitate her own denial and stress and in some areas she believed her own lies (ie insisting my dad or I changed computer settings and passwords instead of admitting she could not remember how to use it).

This is what I've mostly seen as well. A friend of mine's parents are still at home but declining rapidly. She does everything for them. Goes to their home every day, gets all their groceries, medications, drives them to bridge, dr appts etc. Her mom is telling other people that the children are basically neglectful. They do their own groceries. She goes for a walk every day. Calls their own plumbers/etc. None of this is true. She told a family member this who relayed it to my friend, obviously concerned since she also knew this wasn't true. It really really hurt my friend. She is giving up 75% of her life for them and they are so mean to her and tell everyone how neglectful she is!

THe meanness is part of the dementia. It sadly gets worse.

And again, it isn't exactly meanness. They don't know what's going on and if you tell them, they'll have forgotten literally two minutes later. They know their life is sort of working. They don't remember how that happened, and they decide they've done it themselves.

My mom is about to be moved into assisted living, and she thinks she might be moving into an independent living apartment. She complains a lot that none of the nurses (she broke her arm, and once she was being seen by objective observers up close every day, it became clear how bad her cognition is) tell her anything, and she's mad about it. But we know the nurses and the social worker are telling her things, repeatedly, because we're sitting right there.

Please don't discount other people's experiences. Maybe it's "not exactly mean" to you, but it's absolutely mean to other people going through this. I'm glad your experience has not been as bad.

I agree with you - it’s devastating and so hurtful, esp. when other family members believe it.

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:My mother lied in the earlier stages to try to hide her capacity. Overstating what she could do, blaming others for things to cover up her forgetfulness, etc. It was an effort to facilitate her own denial and stress and in some areas she believed her own lies (ie insisting my dad or I changed computer settings and passwords instead of admitting she could not remember how to use it).

This is what I've mostly seen as well. A friend of mine's parents are still at home but declining rapidly. She does everything for them. Goes to their home every day, gets all their groceries, medications, drives them to bridge, dr appts etc. Her mom is telling other people that the children are basically neglectful. They do their own groceries. She goes for a walk every day. Calls their own plumbers/etc. None of this is true. She told a family member this who relayed it to my friend, obviously concerned since she also knew this wasn't true. It really really hurt my friend. She is giving up 75% of her life for them and they are so mean to her and tell everyone how neglectful she is!

THe meanness is part of the dementia. It sadly gets worse.

I think that's what really struck her. Her mom was so sweet, and now she's calling her an ungrateful B for even suggesting that mom doesnt actually go to the grocery store every day That is hard to reconcile with.

So hard to reconcile with. I feel badly for your friend. It’s very hard

Anonymous wrote:

Anonymous wrote:My mother lied in the earlier stages to try to hide her capacity. Overstating what she could do, blaming others for things to cover up her forgetfulness, etc. It was an effort to facilitate her own denial and stress and in some areas she believed her own lies (ie insisting my dad or I changed computer settings and passwords instead of admitting she could not remember how to use it).

This is what I've mostly seen as well. A friend of mine's parents are still at home but declining rapidly. She does everything for them. Goes to their home every day, gets all their groceries, medications, drives them to bridge, dr appts etc. Her mom is telling other people that the children are basically neglectful. They do their own groceries. She goes for a walk every day. Calls their own plumbers/etc. None of this is true. She told a family member this who relayed it to my friend, obviously concerned since she also knew this wasn't true. It really really hurt my friend. She is giving up 75% of her life for them and they are so mean to her and tell everyone how neglectful she is!

My husband was called a slumlord by my aunt, telling relatives that he would not fix up the house she rented. In truth, he was the legal bank for her mortgage 20+ years earlier, and she welched on the loan, never paying him a dime, and lying about her income (said the company cut off her pension, which wasn’t true). I found all this out when I was at her home, helping her hospice, because relatives were “so surprised I showed up”. My husband is much nicer than me and just rolled his eyes and chuckled. I wanted to put a pillow over her face, and pride myself on not doing so.

Anonymous wrote:As an example the previous day might be recounted in a way that makes someone at fault for something they didn't do. Stuff like this.

Yes. I have one sister that called me and said my mother, who is in a rehab after breaking her knee was very sad because the sister that lives near her (we are 3K miles away) “never visits her and the staff hates her”. My sister goes there at least every other day and I call constantly, but my mother won’t pick up the phone if she doesn’t want to. The staff doesn’t hate her either - they are just encouraging her to be able to transition from bed to toilet, etc, so she’s not bedridden for her entire rest of her life. She’s always HATED exercise and refused even 20 years ago after a car accident, to do the PT needed, so now she’s much worse off as a result.

She’s also called the nurses in during the night to check on my father, who she said is dead in the bed next to her. My father died last August. She also speaks of my father constantly poking her and not letting her get any rest. Could be the pain pills, could be sundowning, could be a lot of things. She’s lost 50 lbs and is fairly anemic and I suspect that she has something else undiagnosed going on, but she has refused to go to her regular doctor and the staff can only do so much. She was refusing to be transferred in a wheelchair to the orthopedist to check on her knee but the rehab doesn’t give her a choice like her assisted living place did, which is actually a good thing.

NOW my mother wants to move back East where there is more family, but of course, now it’s too late to make that transition because flying would be too difficult, and she’s too afraid, even with medication, to let the staff transfer her from wheelchair to plane chair. I feel sad for my mother, but after five years of trying to get her to move back East and being refused, I don’t have any guilt. I’m still upset that the last time there was a crisis and I went out, I couldn’t leave for 2 months and our old dog had to be put to sleep and I couldn’t be there to say goodbye.

Bottom line is the more siblings, the more disagreement, the more misery, esp when it comes to memory issues, which often brings out stubbornness in those who were previously in denial.

What medications are given in early stages?

PP whose mother ‘lied’ to cover up/deny her decline. One problem with this is that it was actually pretty successful in fooling other people, some of whom may have been willfully in denial (like my dad), which delayed getting a diagnosis. Other relatives thought I was overreacting when I tried to sound alarm bells about cognitive decline and it took almost a year to convince them that it wasn’t ’normal aging.’ I don’t blame her, but it was very frustrating and undermined our ability to get her on medications that had some benefits in the early stages.

On some level they are aware there are gaps in their cognition/memory, this causes discomfort, the solution is "lying".

Anonymous wrote:The big thing with my mom was “lying” about her continued abilities. She thinks she still has the ability to drive and go places herself even though two doctors have told her she no longer had the physical or mental capacities to do so. I’ve had them put it in writing so I can refer her to it when she thinks I’m making it all up. Not only shouldn’t she drive, she doesn’t know the area, she can’t lift any weight (or her walker), she can’t get into or out of a car independently, can’t navigate a step up over a curb, open doors, etc. It would be a complete nightmare yet she would do it in a second without regard to her or anyone else’s safety.

+1

Perfect example.

Anonymous wrote:

Anonymous wrote:My mother lied in the earlier stages to try to hide her capacity. Overstating what she could do, blaming others for things to cover up her forgetfulness, etc. It was an effort to facilitate her own denial and stress and in some areas she believed her own lies (ie insisting my dad or I changed computer settings and passwords instead of admitting she could not remember how to use it).

They aren't lying or in denial. Because of the memory issues they don't understand what is going on or what they are being told (i.e. doctors).

That may be true for some people, but my mother actually was dealing with both in the early stages. She knew she was declining and was terrified and upset, because her father had Alzheimer’s. She would cry about it and confide to my father how afraid she was. To me that was the one of the saddest aspects — her retention of awareness that she was experiencing cognitive decline, for a long time.

Yes that's it. Making no sense because she doesn't want to admit she doesn't remember.

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:My mother lied in the earlier stages to try to hide her capacity. Overstating what she could do, blaming others for things to cover up her forgetfulness, etc. It was an effort to facilitate her own denial and stress and in some areas she believed her own lies (ie insisting my dad or I changed computer settings and passwords instead of admitting she could not remember how to use it).

This is what I've mostly seen as well. A friend of mine's parents are still at home but declining rapidly. She does everything for them. Goes to their home every day, gets all their groceries, medications, drives them to bridge, dr appts etc. Her mom is telling other people that the children are basically neglectful. They do their own groceries. She goes for a walk every day. Calls their own plumbers/etc. None of this is true. She told a family member this who relayed it to my friend, obviously concerned since she also knew this wasn't true. It really really hurt my friend. She is giving up 75% of her life for them and they are so mean to her and tell everyone how neglectful she is!

I lived this with my mother and it really did in my health. It's amazing how people who who have known you your whole life will believe a woman in her 80s who has been a diva a whole life. My advice to your friend is if there is money outsource a care manager and lots of things. I waited until total burn out and my own illness to do this and by that time I could not listed to another lie or complaint or anger outburst from my mother. I could listen to another doctor or read anything about it. If I didn't have a husband and kids I cared deeply about I wanted to jump off a roof rather than have more years of this. There is a lot of turnover, but even at her worst with them she behaves far better for strangers than she ever did for me. Just seeing me, she still gets an evil glimmer in her eye and wants to blame me for everything and yell.

I'm sorry <3 It's really rough. I feel like she would say the same thing. It's an awful awful situation. And to have people glibly crying "it's not mean!" "theyre not lying!" while discounting other peoples lived experiences is quite nasty.

It's not gaslighting, it's reframing in a way that can make it a lot easier to deal with (or, really, not deal with -- you can't fix this, you can't even make it better, so just do what you can and get out). Your parents aren't aware of facts but telling you something different: They genuinely do not know what's going on. Someone's personality doesn't change from sweet and appreciative to hostile and accusatory because they have suddenly discovered pleasure in being a biotech: They don't know what's going on and the narrative they've come up with makes sense to them. The more you try to make them aware of facts, the more frustrated they get, and the more they'll take it out on you.

I'm surprised that a PP's mother actually accepts the written documents from her doctors saying she shouldn't drive any longer. My mom would have said she'd never seen them before and spun a nonsensical conspiracy before she'd ever acknowledge that maybe she just didn't remember.

Did you ever take lifeguard classes? I remember being told that when you get close enough to a drowning person, you have to be careful because in their desperation, they will push you under in their efforts to get their heads above water. It makes no sense -- you're there to save them -- but all they can think of is how to breathe.

The big thing with my mom was “lying” about her continued abilities. She thinks she still has the ability to drive and go places herself even though two doctors have told her she no longer had the physical or mental capacities to do so. I’ve had them put it in writing so I can refer her to it when she thinks I’m making it all up. Not only shouldn’t she drive, she doesn’t know the area, she can’t lift any weight (or her walker), she can’t get into or out of a car independently, can’t navigate a step up over a curb, open doors, etc. It would be a complete nightmare yet she would do it in a second without regard to her or anyone else’s safety.

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:My mother lied in the earlier stages to try to hide her capacity. Overstating what she could do, blaming others for things to cover up her forgetfulness, etc. It was an effort to facilitate her own denial and stress and in some areas she believed her own lies (ie insisting my dad or I changed computer settings and passwords instead of admitting she could not remember how to use it).

They aren't lying or in denial. Because of the memory issues they don't understand what is going on or what they are being told (i.e. doctors).

I don’t think it’s that simple. In later stages, maybe, but not early on.

Yes, dementia is memory issues and memory loss. They don't understand. They are trying to cover it up as they don't get what is happening to them.

And that's fine if you aren't intertwined anymore and are just treating them as a baby. In the beginning stages though you don't really know what is going on and it's confusing what's happening because they can be fine for 5 days and then completely off.