Dementia or manipulation? And who cares?

[Fiasco]

I haven't seen BPDm for years, as we live several days drive or a flight away and she can't travel. I call her most Mondays, and stay on the phone as long as it takes me to go for a walk or fold the laundry. She's been disabled for a decade after a serious accident where she almost lost her life, was not predicted to even live. Of course she's still chugging along.

What makes me come back to the forum today to write is how after all these years of seeing her for exactly who she is I STILL can't tell when I talk with her if she's at a significant stage of dementia or just yanking my chain. Every Monday is mostly the same conversation. She asks me when EVERYONE's birthday is, usually at least twice. Then she runs down the list of things that happened to various family members in the last year, getting the details wrong about half the time. If there's a birthday or holiday coming up she asks me about a bazillion times what she should send, alternated with telling me she already sent something, and then asking me if she sent anything. It feels like she's trying desperately to orient herself, which is very sad.

I've paid all her bills for YEARS because she can't organize her mail or get any task done in a reasonable amount of time. Bills can get trapped under other crap and not be found for months, if ever. And yet she still tells me what bills she paid that week, doesn't seem to realize she hasn't paid anything since 2020.

On the other hand she orders all her own groceries and other items online with no problems. She was falling for a lot of scams but I think that's normal for the elderly and I solved it by giving her a special credit card that I manage and approve all the purchases on, after she canceled her master card for the billionth time because of "fraud" (actually just dumb purchases she made herself). And when she had regular doctors appointments she never missed a single one, even using Lyft to book her rides.

Another example where I can't tell if she is yanking my chain or not: it was my son's birthday in Feb and she sent him a birthday card. Great, only a week late too. My son got a gift from her brother and I did have my son send a thank you card to her brother. I didn't bother with a card for her and last week when we talked she goes "did I send (son) a birthday present?" She's forever asking me if she sent my family a gift, although she very rarely does. And she proceeds to say "I know I sent him a card and I know my brother got a thank you note and I never did".

I'm just a ball of confusion. I manage her life for her remotely and don't plan to ever see her again. I do a good job, although sometimes I wonder if I'm leaving an extremely vulnerable senior to her own devices. Vulnerable senior or evil genius? I just want to be free of her. I'm not a heartless shell (like her) but she's turning me into one. I don't know if I even have much of a question, but I'd like to hear from anyone who can relate, or who has managed to solve the riddle of PD or dementia.

[Poison Ivy]

My mom, age 94 1/2, has not been diagnosed with dementia but has become much more confused since early this year. (We think she might have had a TIA or stroke but no health-care professional has said this to us.) The variety in what she can remember and what she forgets is interesting and frustrating. One thing she always remembers: to bug me about my children not sending thank-you notes to her. My theory is that certain "essential" parts of people's personalities linger even when the brain is diminished by illness, injury, or age. As applied to my mom, that means, "Once a cranky person, always a cranky person."

[FromTheSwamp]

I went through all this with my mom.  It was dementia, which became very clear as it got worse. All the things you mention went on, and I tried to tease out the difference between the PD and dementia, and in the end, like you said, does it matter?  She was also manipulative throughout, and she treated everyone increasingly badly as she deteriorated.

The ability to spend money was one of the VERY LAST things to go.  Apparently it was super important and she held on to it with deep determination. 

Your mom is lucky that you haven't cut contact with her, and are willing to talk to her and help her manage her finances.  I'm sure she wants more, but she should have treated you better, and then you would have felt safe with her and would be more present now. 

I wanted desperately to have the kind of loving relationship where I could help my mom more personally, but she chose differently.

[Fiasco]

The ability to spend money was one of the VERY LAST things to go.  Apparently it was super important and she held on to it with deep determination. 

Really interesting perspective from both you and Poison Ivy on the way she never forgets the things that are most important to her. Like how to shop, or complaining how victimized she was as a child by having a favored brother. She's got very prominent internalized misogyny from that one (made it extra fun to be her daughter).

Fun update since I posted this morning she has sent an extremely lucid and fancy sounding e-mail to a realtor, so she can continue to pursue a hobby I thought she'd left behind: attempting to buy a house near me. Looks like I will be skipping next Monday's call in a desperate attempt to not have a stroke from her nonsense. Wish me luck!

[wisingup]

Fiasco - I am going through this now as well.  It is a very complex web of PD, age-related cognitive issues, weaponized incompetence, and in my mom's case - recurrent urinary tract infections that cause episodes of delirium.  There is probably a significant amount of generalized fear & anxiety in the mix as well.  And anger (at me) at not getting the treatment she feels entitled to.  In the end I've had to conclude that it doesn't really matter.  Being around her is incredibly damaging to me & I have to minimize it, no matter the root cause of her behavior.  And then I struggle with my "abandonment" of this elderly sick confused person.  I think of my own kids, though, and whether I would ever want them to feel as anxious and burdened as I feel dealing with my mom and her endless crises & the answer is a resounding NO!

Her behavior is all over the map.  Her memory & ability to complete tasks are all over the map.  It's too much for us non-trained people to try to figure out.  I'm hoping at her new assisted living facility they will have more expertise in how to handle these issues.

[moglow]

You know all too well her lucid moments are fleeting at best, she'll melt down soon enough. You can do this!!

That said, I can't tell with mine either - I'm going with manipulation because patterns matter. I know who she's shown herself to be throughout my life. Call it what you will, still not my stuff and I ain't playing anymore.

[Boat Babe]

Yeah, same over in my corner of the world. Moments of lucidity, interspersed with legit and understandable complaints of distress, regression to childlike states, then POW! a PD snarky comment just slipped in there when I least expect it.

Joy!

[bloomie]

Fiasco - I want to be you when I grow up!! You have established a way of caring for your mom, a level of contact, and managing both of your needs in a way that works for you right now. The emotional aspect of it all has to be less clear and must take a toll.

My mother was diagnosed with early onset Alzheimers AND she showed all of the traits of a person with BPD, was grandiose like someone with HPD, and addicted to prescription medications as well. She ran my parents' life into bankruptcy 3 times despite my father working hard and providing a good living. Her home was packed with well organized hoarded fancy items. It was impossible to know what was causing what, but like others have said the money, spending, hoarding bit hung on far into the later stages of dementia.

The only reason it mattered to know about the cognitive impairment versus the other combo plate of issues she had is two things - there are medications that can help someone to maintain cognitive abilities longer AND my father finally realized that even though on the surface it looked like my mom was taking care of things, when we dug deeper she wasn't at all. So, it really did help adjust expectations of what she was truly capable of and could be trusted with. And for us, because she was young it did help explain some of her erratic behaviors and paranoia.

People with cognitive decline compensate and can seem pretty ok on the surface for a long time, but I believe from observation, if they are disordered in their thinking to begin with, those same primal kinds of coping and defense mechanisms are so well grooved in their personalities that they use them. I watched my mother during the verbal part of her dementia assessment and it was fascinating to see how she could navigate direct questions she knew she couldn't answer and attempt to manipulate through offense and outrage when confronted with her diagnosis. Which she didn't "agree" with!! Because if you are my mother you can disagree with a full diagnostic process and reliable findings if you don't like them. And she was observably impaired when she could still do this.

People with cognitive decline also have good and bad days. So, your mother may order groceries on a good day. And it may have taken her several to do so. She most likely, would present to you only her accomplishments and the things she can do. The repetition on certain subjects could be her trying to get to the point she didn't get a thank you card, or could be she is stuck in that groove right now. She also may retain certain abilities and skills for a very long time while she has lost others and is covering that up or trying to 'show' you the list of things she remembers.  And if your mother is like mine at all, she could be lying about some things or how she accomplished certain things, I am sorry to say.

It can become mind boggling if we let it.

Keep doing what you are doing in thinking this through and adjusting your engagement as you need to. It's pretty sad to be facing any of this, isn't it? I am just so sorry that it is all complicated and raises more questions than answers as our mothers face the final season of their lives.

[Sneezy]

Being around her is incredibly damaging to me & I have to minimize it, no matter the root cause of her behavior.

This is exactly how I feel about my mom (covert NPD).  I know she is having some age-related cognitive decline, but much of her behavior is exactly the same as it's been for many, many years.  I can't always tell when she is lashing out at me because I am not paying enough attention to her or because she can't remember something that she should remember or because she is feeling physically unwell.  In the end, it doesn't matter.  Spending too much time with mom is bad for my mental health and so I have to limit the time I spend.  That said, I do feel guilty about it at times, especially when mom is having a "good day." But I know if I get sucked back in and start spending more time with her, I will eventually regret it.

I think it's very difficult to tell which behaviors are PD-related and which stem from dementia.  My MIL has moderate/advanced dementia.  And yet, her histrionic behaviors are still there as well.  In hindsight, some of her behavior over the past ten years that I initially attributed to her histrionics were probably related to dementia and vice versa.  Sometimes you can only recognize dementia behaviors in hindsight.  For example, MIL suddenly got very reclusive a few years ago.  Stopped socializing and wouldn't even talk on the phone.  I initially thought she was punishing her family for not paying enough attention to her.  I joked that we had our very own Greta Garbo withdrawing from society to teach us a lesson.  Looking back, this was a clear sign of her progressing dementia.  But it wasn't evident at the time.

MIL never admitted that she had any memory issues (because she was always perfect).  Similarly, my own mom refuses to acknowledge that she may be getting forgetful (she is also always perfect and so she never forgets anything.  It must be someone else's fault at all times).  It's really too bad because a full cognitive assessment and proper medication (where necessary) and lifestyle changes can make aging better.  Not great, but certainly better.  Unfortunately, our parents have a harder time than most adjusting to the aging process.

[Fiasco]

People with cognitive decline also have good and bad days. So, your mother may order groceries on a good day. And it may have taken her several to do so.

This statement hit me. She' DOES take several days to finally place her grocery orders. I can see the items sitting in her Amazon cart (I'm in ALLLLL her online business) for up to a week sometimes. She's also been going on and on lately about how websites get overwhelmed and don't work.... now it seems so obvious it's her that's overwhelmed and can't figure out how to complete purchases.

For example she likes to order from a specialty gift shop online for holidays and she's FOREVER going on and on about how she tried to order something for my family but "the website ran out of (literally everything they sell)". I've let myself get distracted by the fact that she always manages to place a big specialty gift order for herself (I see the confirmations in her email). I even argue with her, saying "that's weird because you managed to order something for your place, lol" but she either denies placing the order or claims her sister sent the gift to her. Um, no she didn't, you placed the order and I approved the charge. It's such a tangled mess! I could scream. 

Thanks for helping me through this, maybe my title was right all along. Who cares which it is when there's nothing I can do about it anyway.

[Returned]

Oh my goodness! This thread has been eye opening for me. I have been struggling about whether my mother is developing dementia. She sometimes confuses me to such an extent that I think I'm the one cognitively declining!
It is such a relief to know that I'm not th only one feeling this way.
So often things like planned appointments don't go her way and it's always someone else's fault! She won't let me help in any way so it happens often. And not managing to order things online because they were out of stock or the website wasn't working, or her grocery shop not being delivered (when it turns out she didn't complete the order) This I wouldn't mind, except that again I'm not allowed to help her, so I've ended up taking her out for a grocery shop, which takes all aftenoon, and trying to stop her buying things she already has in her freezer/is complicated to cook and she won't manage it.
She's a fairly covert narcissist and my siblings and I manage her by being careful what we talk to her about (and one keeps away as much as possible) but walking on eggshells is so tiring!
She wants the help but doesn't want to want it. One sister pointed out that she's worst to the ones that give most help.
She contradicts herself a lot! But would deny it if challenged.  I could go on, but I don't think I need to as I think all of you understand. 
She is charming to people outside the family, but little do they know that she talks badly about them. Except when she's comparing us unfavourably to them. She'll often say that someone is 'like having another son/daughter'. I think that is very hurtful but she believes she is lovely and kind and sweet. I'd never say that you my children, ever!
Your comments have made me feel saner and I wish the best for all of you

[Fiasco]

She sometimes confuses me to such an extent that I think I'm the one cognitively declining!

This! I feel like this whenever I talk to her. The not letting you help thing is maddening. I'm sorry we are both going through this.

[Leonor]

Walking this road alongside DH and MILand waving to my fellow Out of the FOG travelers along the way!

It occurred to me while reading these posts that it really doesn't matter; and feeling guilty for feeling frustrated or upset with someone who "can't help it" because of dementia is just the flip side of feeling like if only you said this or did that, you feel you could "get through" to someone with a personality disorder.

All the feelings we experience and the judgements and analysis we torment ourselves with for having those feelings are inaccessible to a personality disordered or cognitively impaired person.

The bad and sad news for us is that it doesn't matter. They are incapable of accepting compassion or kindness or concern. It's like a radio frequency they don't have the receiver for.

The good news is: it's not personal. So take the same measures to protect and nourish and care for yourself: are you eating / sleeping / exercising / laughing / relaxing all the time that you need and want? Are your caretaking obligations in agreement with your personal qualifications and life goals? What can (and should) be outsourced to professionals? Are you making care decisions based on pragmatic, logistical circumstances?

And are you emotionally caretaking yourself, giving yourself the time and space you need to honor and tend and nurture your own feelings and grief?

[Fiasco]

And are you emotionally caretaking yourself, giving yourself the time and space you need to honor and tend and nurture your own feelings and grief?

Thank you for everything you said, and especially this reminder at the end. 

[bloomie]

She sometimes confuses me to such an extent that I think I'm the one cognitively declining!

YES!!!! It is a labyrinth like no other. We have true decline in our elders, we have compassion for the season of life our elder is in that is filled with loss - of control, of friends and family, or independence, of cognitive ability, physical ability. AND layered in all of that is their innate personality and tactics for dealing with the world. Which are anywhere from okay to poor coping to outright toxic.

And if they have been unhealthy and disordered for decades they will still be. We know that. We are living that.

I think for most of us there has always been a familial tradition of caring for, and honoring our elders to the best of our ability, often with them living nearby, or in the same home. In that model, elders did what they could to continue to add to, and be a contributor to family life as they were able. As it should be.

But, correct me if I am wrong, when did things shift to the point where all of the resources, energy, and oxygen in the room is to be expended on one family member to the detriment of others? So much time and energy putting ourselves in exhausted, triggered states every single day because an elder refuses care or confounds and creates chaos around every day life fighting like mad the reality that they are OLD and all that entails.

When does the bigger picture of our entire lives, our needs, the entire family system's needs become the consideration in all of this? I am asking here for all of us.

When did we begin carrying around our elders on potato chips? (asking for a friend  )

[Poison Ivy]

 

[1footouttadefog]

I am loving this question myself.  Is it PD or dementia.  Is it decline and incompetence or pd game playing?

A few thoughts that come to mind:

In most cases It does not matter, either way I have to use tools or set boundaries to limit or manage the impact on myself. 

Either way is mental illness. 

There are many types of dementia and in some personality changes take place long before  memory loss or coincidence with it. 

My PDH will have glitches in thinking or task completion and at other times can do the same task. 

When his mind is set on certain things he can have a hard time on boarding new info.  Repeats questions and such
 

[Sister Ha]

Thank you for this thread.  Very helpful topic and everyone's posts are top shelf.  I learned and commiserated a lot. 

I just had a particularly hard day with PD/ALZ mom and this really helped me.  Thanks again!

[Fiasco]

Thank you for this thread.  Very helpful topic and everyone's posts are top shelf.  I learned and commiserated a lot. 

I just had a particularly hard day with PD/ALZ mom and this really helped me.  Thanks again!

We're in this together