Dealing with emotional reactions based on incorrect facts

LilRoundTop

Hi All -

I'm reaching out to get some help dealing with what's becoming a more frequent occurrence with my LO. She has not been formally diagnosed with dementia but has been showing signs of short term memory loss for a few years now. Her doctor has been helping her by modifying medications, etc but it feels like we are getting close to a point of needing more testing and evaluation.

The dynamic that is happening now is that she gets confused about the facts from conversations that happen with me or the kids. If the "alternate fact" hits an emotional area, she will begin to ruminate on it and become upset. She often goes to a place of thinking that she's been wronged or disrespected or lied to. When one of us try to tell her that she misunderstood the conversation or that something she thinks she heard wasn't actually said, she becomes even more distrustful and lashes out saying that we are manipulating her or taking the person's side. It's a difficult situation to manage for me because I'm trying to help her understand what's actually going on but instead I become the "bad guy" who's "always taking the side of the kids" in an argument or conflict that she's created out of thin air.

(Note: she is still very independent and functions very well with a moderate amount of help from me. She's not home-bound but needs help keeping track of the calendar, etc. She doesn't pay bills, cook dinner or manage the house anymore. She's still active socially but rarely does anything alone with others. She always wants me along.)

My adult children understand that her memory is starting to falter, but these situations feel like something else because she's so in tune with her emotions and she articulates them so clearly at these time that she doesn't appear to be impaired. Making things even more complicated, she reaches out to others who weren't involved in the first place, tells the story of how she's feeling and why (with incorrect facts), and then gains support from the unknowing party that she's right to feel this way.

The strain on me is great when this happens because my tendancy is to call the kids behind her back and explain what's going on so they can be prepared when she calls, but that is making me crazy. It feels like I'm creating the "Truman Show" where everyone knows what's happening isn't real and we're trying to manage a different reality for her. The alternative often is for me to support her emotionally but that puts me in a situation where the kids feel that I'm not supporting them when dealing with their drama-queen mother who's making up things that didn't actually happen.

Any suggestions on how to stay sane through this phase?

M1

welcome to the forum. These kinds of misunderstandings are common, and I think contribute to why a lot of people with dementia withdraw from friends and family as the disease progresses.

Cardinal rule is that you don't try to reason or correct. She can't process the information. Unfortunately, it's common for the paranoia to be directed at family members. So yes, you do talk to the children—and everyone else—behind her back, and that's a very early shift in your relationship in that you are no longer functioning as a co-equal partner but as her caregiver, not including her in your reality. It's very sad and very hard, but very necessary. Safety and her staying calm are now your priority, not reasoning with her or getting her to see reality.

You may find that you just don't tell her a lot of things, don't try to include her in day to day processes that could be confusing for her. I had to do this a lot; when something needed doing around our farm, I just scheduled it and took care of it, and never even told her that appointments were made. We no longer functioned as equals, and that took a lot of getting used to.

Another strategy is just to use noncommittal statements—if she accuses one of the kids of something, just say "gee I'm sorry that happened" or "sorry there was a misunderstanding, I'm sure that was upsetting." You're acknowledging her emotion, but not commenting one way or the other on who's right and who's wrong.

It does sound like it's time for more testing or a formal diagnosis, because you may be to the point that anti-anxiety medication might help her. It also sounds like you may be close to the point that she should not be driving (always a big hot-button issue).

jfkoc

Addition to above;

A formal diagnosis is imperative and it must follow protocol.

One online source for diagnosis

https://www.mayoclinic.org/diseases-conditions/alzheimers-disease/diagnosis-treatment/drc-20350453

charley0419

https://alzconnected.org/discussion/comment/204606#Comment_204606

https://alzconnected.org/discussion/comment/204606#Comment_204606

see if you can get into a trial as they do testing that insurance won’t pay for and get a lot of info. I did for wife kept her in trial for short time as didn’t like idea of not knowing if she was taking meds or placebo, thought better to have Nurologist put her on meds.

Hope5757

OP,

As usual, M1’s advice is spot on.

We had a “catastrophic reaction” last night after MIL was triggered by a long conversation with her daughter. Their relationship is complicated and some discussions cascade into paranoia and accusations. MIL hears certain things. Those words trigger feelings and emotions that are neither accurate or logically warranted. But that’s how she feels.

After I got her calmer, she said something about being in the right. I responded that we all cared about her and we weren’t trying to take her money. She denied making any accusations and literally crossed her heart and swore she’d die if she had accused us. And of course she had just accused everyone.

All I could do was reassure her. She can’t remember. She can’t infer information correctly and when triggered, her paranoia results in hurtful accusations flying like shards of wood from a splintered board. It’s hard to ignore her meanness but that’s where she was tonight. This morning, she was cooperative, ate her breakfast and is sleeping soundly in the recliner.

LilRoundTop

https://alzconnected.org/discussion/comment/204621#Comment_204621

Where can I learn about protocol to ensure that happens? I read through the link you posted are you saying it should be done by the right professionals (ie. neurologist) or something more?

LilRoundTop

Thanks for the quick response. I see the transition happening. Some things feel easier (such as managing finances and the home maintenance) but the things she used to manage are harder (such as groceries). It’s not that I can’t do it on my own but she gets angry if I’m buying something she doesn’t want or if I tell her that we don’t need another giant Costco box of crackers because she can’t remember we bought 1 two weeks ago.

The emotional issues are really my challenge. She was the emotional leader in the relationship and with the family. Now that she’s becoming more erratic and paranoid, it’s affecting each of us in different ways and none of us seem to know how to manage her effectively. The description below of splinters flying in all directions is very accurate.

I’m starting to see that a diagnosis is important if for no other reason to be able to confirm suspicions. I also think I’d have less of a tendency to blame myself when things are off the rails. Without the diagnosis, a part of me wonders if I’m the problem rather than her.

SSHarkey

You’ll never convince her or cause her to see her illogical thinking. Management involves mostly redirection. Validation of feelings, then changing of subject and focus. I would suggest you have a meeting with your daughters and discuss these issues. Just as you have given them to us. You are a team, so to speak. And they need to be completely aware of what is happening. You can all support each other, remind each other, and brainstorm together.

Iris L.

Read about anosognosia. Don't bring up her having dementia. Learn the work-arounds that the members use.

Iris

harshedbuzz

I'm reaching out to get some help dealing with what's becoming a more frequent occurrence with my LO. She has not been formally diagnosed with dementia but has been showing signs of short term memory loss for a few years now. Her doctor has been helping her by modifying medications, etc but it feels like we are getting close to a point of needing more testing and evaluation.

Hi and welcome. I am sorry for your reason to be here but pleased you found this place.

I would prioritize a comprehensive evaluation at this point. A PCP prescribing psychoactive meds without a diagnosis is kind of like playing wack-a-mole. If this doc hasn't ordered bloodwork and imagining to rule our treatable conditions that mimic dementia, I'd start over with a new PCP.

What meds is she taking? Dad had a lot of the behavior you are describing and needed a low dose antipsychotic to tamp down his anxiety so that distraction and validation could help him be less stressed and agitated.

The dynamic that is happening now is that she gets confused about the facts from conversations that happen with me or the kids. If the "alternate fact" hits an emotional area, she will begin to ruminate on it and become upset. She often goes to a place of thinking that she's been wronged or disrespected or lied to. When one of us try to tell her that she misunderstood the conversation or that something she thinks she heard wasn't actually said, she becomes even more distrustful and lashes out saying that we are manipulating her or taking the person's side. It's a difficult situation to manage for me because I'm trying to help her understand what's actually going on but instead I become the "bad guy" who's "always taking the side of the kids" in an argument or conflict that she's created out of thin air.

This is pretty typical. She likely has anosognosia and can't appreciate that she's suffered a loss in cognition and memory. It's never generally a good idea to "correct" a PWD. It's best to apologize and move on with a distraction or change of topic.

(Note: she is still very independent and functions very well with a moderate amount of help from me. She's not home-bound but needs help keeping track of the calendar, etc. She doesn't pay bills, cook dinner or manage the house anymore. She's still active socially but rarely does anything alone with others. She always wants me along.)

If it's dementia, these changes may still be years away.

My adult children understand that her memory is starting to falter, but these situations feel like something else because she's so in tune with her emotions and she articulates them so clearly at these time that she doesn't appear to be impaired. Making things even more complicated, she reaches out to others who weren't involved in the first place, tells the story of how she's feeling and why (with incorrect facts), and then gains support from the unknowing party that she's right to feel this way.

Emotional intelligence remains intact well into the latest stages of the disease. She won't remember what she was told but she will remember how what she was told made her feel and she no longer has the bandwidth to properly process it.

The strain on me is great when this happens because my tendancy is to call the kids behind her back and explain what's going on so they can be prepared when she calls, but that is making me crazy. It feels like I'm creating the "Truman Show" where everyone knows what's happening isn't real and we're trying to manage a different reality for her. The alternative often is for me to support her emotionally but that puts me in a situation where the kids feel that I'm not supporting them when dealing with their drama-queen mother who's making up things that didn't actually happen.

The TL;DR to this is that your children need to put on their big-boy/big-girl pants accept this as a part of this hellish disease and not about them. It's the disease talking. Unfortunately, this can be easier said than done. Was you wife always dramatic and something of a pot-stirrer by nature? If there's a male version of a drama queen, it would be dad. When I would come here to rant about his accusations seasoned members would remind me it was the disease talking. This did little for me as the verbal assaults falling on my ears were consistent with the scripts I grew up on.

It was only when I embraced this notion and realized there would be no closure that I could let go of the anger and frustration and grow into a better assistant caregiver. This also helped me avoid the temptation to be unkind now that I had the upper hand. Dad routinely accused me of costing him $360K by selling his home cheaply. Mom didn't listen to my advice to fib— she wanted to treat him as the equal partner in the marriage he no longer was. We paid dearly with month of angry outbursts as a result. I apologized once when this came up and he calmed right down and dropped it. I only did it to prove it wouldn't work on dad. It was like magic.

Any suggestions on how to stay sane through this phase?

I would do the evaluation and keep the kids looped in. Maybe even bring them to the appointment where her testing is reviewed and diagnosis is given. They may be more accepting of this coming from a doctor.

I would share these as well. Good luck-

HB

https://tala.org/wp-content/uploads/2019/04/Tam-Cummings-LLC-Handouts.pdf

https://www.smashwords.com/books/view/210580

upstateAnn

Thias drove me nuts in the early stages of my DH’s disease. Once I decided to go with the flow it just got better. Last night my husband asked where the two men went. I said, hmm I did not see them but they are not her anymore. We returned our attention to the basketball game on tv. Our kids have learned to do the same. Except I if it involves danger, we accept that our DO lives in another world sometime.

jfkoc

Lil round top…..Usually diagnosis is a team effort. PCP. Neurologist, Neuropsychiatrist/Neuropsycologist. (SP) After diagnosis care is from a neurologist.