No Good Deed

[moglow]

Dearest gentle readers ...

Today is Monday, July 29 - older brother [who, I might add, I work for/with for a number of years now] called me a few days ago, proposing that we go visit mommie dearest now she's in a rehab/nursing facility. He's in the middle of closing his original business location, consolidating all operations and staff into a newer busier location opened several year ago. Organized chaos, with a whole lot of moving parts and people. The move is pretty much complete, which left him with an unscheduled day. Thus his call to me, asking if I'd consider a road trip to get the lay of the land; last night I confirmed that yes, I'd go with. Mainly I didn't want to travel there alone nor did I think it a great idea for him to. Not that he can't handle himself but safety in numbers. Extra pair of eyes and ears.

I text brother #2 enroute this morning to let him know we're headed that way, and that we were indeed going to facility to see her. Our goal was to hopefully clarify some insurance/finance issues and take at least one thing off his plate if we could. More on that in a minute ...

Y'all, there was not a flicker of recognition when we walked into her room. Granted element of surprise was in our favor, but it honestly never occurred that there'd be complete blank confusion. We were there to check on her, see what she needed, how we can help, maybe get answers to her questions.

She literally asked "who are you with" and "why are you here", culminating in asking my brother who he was. He told her and she kind of shook it off with Oh my. I had no idea. I hadn't seen you in ... [actually it's been about a year-he's not changed much]. After a minute or so of bumbling around, she turned to me and asked: Then who are you?

She gave no indication she knew who either of us were or how it connected. None. We were names. Then began her explanations of I've been like this for a while and i don't know why you're here. An edge crept into her voice. Awkward awkward awkward. We apologized for disturbing her morning and left to discuss what we could with business office, get a general idea what is/isn't covered and for how long.

We go outside, still heard nothing further from brother in charge, decided to go get a coffee and hang out for a bit. We get nothing in response to phone call and texts, and decide to come home. Then the texts begin, that we should have cleared it with him, that she has to be managed like a feral cat. She had called him all upset after we left -completely emotionless when we were in her room so it flipped just that quickly- and yet he still didn't call to speak with us. It all felt like trying to manage conversation with her, to be honest. Accusations and recitation about how we handled it badly and paranoias, presumed motives that simply didn't exist.

I spoke with her just a few days ago, she was open and laughing about her needing a haircut and how maybe I should cut it for her. I knew she has claimed to remember/not remember a wide variety of situations, but this just blew my mind. None of this level of confusion had been communicated to us before. My mother had no clue who we were, when standing right in front of her. It must have scared her silly, thinking some strangers were about to cart her away or rob her blind.

Or was it all yet another act? We don't know, do we?

[square]

Moglow, what a mess.

I'm speaking just from my experience with a non parent with dementia.

It's very common for someone with even mild dementia to know someone well in one context - texts, calls, or even face to face in a particular place - but have no clue who they are in another context, eg showing up unexpectedly.

Being in a new facility/environment seems to also accelerate confusion.

You know your mother best, but I can certainly believe she could have blanked on you both sincerely. But of course, she will use her familiar toxic behaviors to handle any situation as she always has.

Those of us who do not have experience with dementia in family members cannot be expected to know how it goes. I've been in the situation where my visit to another relative, planned withband encouraged by the family member "in charge," caused a whole drama involving my MIL that resulted in my never seeing the family member again because the drama and pain were too great.

You can't be expected to know. So now you know that this is how it's gonna go. So you decide what to do - or not - next time. Hugs.

[notrightinthehead]

What a confusing experience. Does it ever stop? At least you have an impression of the facility now, have shown yourself there, got an idea. If needed and asked, you could get involved. For now, you can continue to watch the spectacle on the sidelines.

[moglow]

Watch from sidelines indeed. Ya know, I've been struggling off and on with the whole not being wanted, staying away because the resentments seemed so clear. I'd reached what I thought was acceptance. Today, right now, once again it's just sad.

There's been no mention of dementia but we've all questioned her ability to care for herself. The complete withdrawal from everyone and being combative when questioned about the simplest things. She's claimed to not know things and referred me to my brother in more than one occasion. And he's mentioned her being overwhelmed and shutting down over changes. All she's had the last few weeks are changes, and now ... We show up like ghosts from a distant past, two children she'd shut out.

I also wonder what her roommate thought/said about it. It's a smallish room with beds fairly close, no privacy to be had. And here she is with this stranger when her two -most likely not previously mentioned- children walk in. Children she's not seen in years. I don't doubt she's shocked or had a lapse given all the changes in her life just the past few weeks. She had yet two more smiling strangers walk in.

And at the same time I realize it may be the last time we see her in this world. That we well and truly don't exist in hers.

I'm just sad.

[treesgrowslowly]

Hi Moglow,

I'm so sorry you're going through this. Visiting with a parent in that confused state of mind would be upsetting for any of us.

There is so much loss in these situations with PD parents. I've tried over the years to find good books or videos or people to learn from about grief for those of us with PD parents who are still alive, but not 'present' and certainly not engaging with us in a healthy way, and it's been hard. It doesn't seem like there is enough attention on us yet - the ones who have to grieve and who have so much sadness that is on so many levels because our parents are this disordered.

Even when we reach acceptance - which I have no doubt you have over the years - it doesn't mean sadness doesn't come too at times. In fact, sadness can be a sign that you are in acceptance. You are not in denial about what is going on and what is happening to her and how it affects you. Being sad about it makes sense when we see our parent and she is unable to function properly. It is sad.

Accepting that our parent was too disordered to do normal, parent things, isn't easy. We lost something important, and it was all so invisible to everyone around us, and our own parent has behaved as if they were the victim the whole time. It is just the most miserable, confusing situation to be in IHMO. I think you are doing and feeling really understandable things. With parents like these, there's rarely ANY acknowledgement or focus on what happened to us and our needs, and I think that really is something we can help each other out here on the boards. Living with an acceptance about our PD parents has felt more like a practice to me, than a destination I only have to go to once. It has felt more like something I need to use to understand myself - over and over and over.

I hope our support helps during this stressful time for you. One of the things we're forced to accept is that our aging PD parent will never wake up and realize what we've been living with, and apologize or change or make amends with us. That is a legitimate loss for us adult children of PD parents to grieve.

Trees

[bloomie]

Moglow - this is a shock given you had no hint of the level of the cognitive decline your mother may have experienced. Possibly exacerbated by this recent round of hospitalizations or something that has been going on for awhile now. It is also possible brother #2 is in denial and has been for a good long time.

Seeing a parent in this state is terribly hard under any circumstances. But, when there has been such distortion of reality and dysfunction from the parent that is life long for all of you, it can make it hard to know who to trust and what to believe. 

This is a complex kind of loss and grief. This is a beast to bear and my dearest hope is that you are taking very good care of yourself and that you and your brother #1 are able to support each other through this.

This is so very sad and I am so sorry that what you hoped would be a encouragement to your mother was such a tough experience.

[NarcKiddo]

Wow. I'm sorry you had to go through that. It sounds very distressing.

[moglow]

It does help, getting the support here, so much! People around us are all, dementia Alzheimer's etc, well yes possibly but I also know her. I know what she's capable of, have experienced it too many times. She could well be yanking everyone around, eating up the drama whenever possible. That said ...

Last night I got a very coherent text from her, complaining that me and older brother have shown no interest in years (hello pot meet kettle!) and asking why the surprise visit now. I went over what we knew and that brother #2 had seemingly asked for help regarding insurance benefits/lack of same. That's what I DO, verifying ins coverage and explaining it to patients! Brother had asked if I'd go with him, etc etc. There was a supposed end of month deadline and it was the 29th. Immediacy and that day we were actually available.

Not enough for her - why didn't we call and let her know we were coming?? And she has enough stress in her life. Well (I said to myself) had we called first she'd have time to work herself up and possibly shown her ass, as history has taught us. I apologized for any stress caused, reminded her that we've all had more than enough of that, and assured her it won't happen again. Because let's face it, we're not likely to visit again, announced or not.

Brother #2 meanwhile had reamed me repeatedly via lengthy texts about she's like a feral cat that has to be managed. And she's confused and scared and and and... Know how you actually "manage" a feral cat? You let them work through it in their own time. You get out of their way and give them room to trust others. You don't manipulate, answer for or excuse them, you let them learn that actions have consequences. She's been managed/enabled her entire life, tiptoed around and pandered to. Now she's totally dependent on him to manage everything, including her relationships with others? Okay, you do that and don't complain when you're exhausted, information is needed and she won't cooperate with anyone else!

Just frustrated, this is a repeat of youngest brother's visit here a few years ago where #2 tried to "manage" and explain her. He repeatedly lashed out at everyone not understanding how she could refuse to see them after all these years, loads of instructions on what we should do and exactly how. I don't need her many excuses and justifications and lies - she wasn't and isn't actually interested. No amount of manipulation was going to make that happen then or now. She's still that same disinterested volatile human she's always been. Grrrrrrrrrr!

SO much fun, yes?

[Call Me Cordelia]

I'm so sorry. There really isn't a whole lot for me to add to the discussion, because yes, it is same old you-know-what, piled higher and deeper now. You have been consistent and kind through all of it, while taking care of you, for which I greatly honor you, Mo. Even so, yes, it absolutely does sound distressing and I'm so glad you and your one brother have each other and you aren't completely on your own.

[moglow]

Cordelia the pile is indeed high. I know #2 has to be exhausted with it all, but still insisting that he and only he should arrange, schedule, coordinate and plan? Dude. Stop "managing" already. She's going to do and be exactly who she is and there will be frequent curveballs, because that's who she is. Trying to control that nonsense is an exercise in futility. They somehow forget that *I* was the "keeper" who got dumped on for decades, while they were elsewhere. I know how this works, or not, as the case may be.

There is still that part of me that thinks she's playing him and any/everyone else as much as she can. How much is play and how much is genuine, i have no idea. I don't know that she could have pulled that whole blank emotionless thing off by herself without cracking or if she really is that good at it. The aftereffects? That's ALL her modus operandi, starting with the "upset" phone call.There was a hint of an edge as we decided it was time to go, but she wasn't upset or anything else. Shut down maybe but I don't know how she could have deliberately done that and held to it. She was sure trying to pick a fight last night, and we'd bet it would be a while before I heard from her! Getting those texts kind of steered me differently because that's *exactly* the mother I know, lashing out and demanding information. And yet she didn't communicate with big brother, she asked about him and his motives, but didn't ask HIM. So she's not completely gone and helpless, is what I'm saying. The monster still lives within.

[Rebel13]

but I also know her. I know what she's capable of, have experienced it too many times. She could well be yanking everyone around, eating up the drama whenever possible.

Moglow, this is exactly what I was thinking when reading your original post! In my experience with dementia, which is admittedly not extensive, the patient is very often trying to COVER UP the dementia by pretending to know/remember more than they do. My gut says your mother's open admission of not recognizing you was more likely an attempt at punishing you and your brother. It's impossible to know for sure, but I think it's VERY possible, especially given her subsequent behavior of texting you with complaints and scolding.

Brother #2 meanwhile had reamed me repeatedly via lengthy texts about she's like a feral cat that has to be managed.

This was another thought I had, that this is classic triangulation, and your brother is feeding right into it. She's become so used to having him manage and take care of everything that she couldn't cope when she didn't have him to run interference with an unexpected situation.

I'm so sorry about this. It seems like there is no end to the pain these dysfunctional people cause us, no matter how hard we try to be kind, generous, and giving with them. I will be glad to hear how your story unfolds if you feel like sharing, since I learn so much from how everyone here copes, and I know there are hard times coming as my parents get older and need more and more help.

[Fiasco]

In my experience with dementia, which is admittedly not extensive, the patient is very often trying to COVER UP the dementia by pretending to know/remember more than they do. My gut says your mother's open admission of not recognizing you was more likely an attempt at punishing you and your brother. It's impossible to know for sure, but I think it's VERY possible, especially given her subsequent behavior of texting you with complaints and scolding.

 

I'm about to visit BPD plus undiagnosed dementia mom and this is the exact level of foolishness I am bracing for.

[moglow]

Y'all do make a good point. I've since talked with my youngest brother, who asked specifically if we could tell if it was genuine. What comes back to me over and over are her flat emotionless questions and responses. There was no panic, no obvious confusion, no upset at these strangers in her room, no real response once we identified ourselves. No "upset" other than her call to #2 after we left. 

This is not an emotionless woman, not at any point in our life with her. Some agitation when questioning why we were there, yes. Later text questions of why we didn't tell her we were coming had a familiar feel. But at the time? Nope. No upset at all. No playing along, pretend excitement at us visiting. She did claim we'd changed and that explained her confusion - except we haven't. 

There's definitely some divide and conquer triangulation taking place. #2 has continued with assumptions and insinuations of ulterior motives, of bypassing him and he wants to know why, we disrespected and made a statement by being there and not inviting him. 

It's worse that the two of them had just started talking after years of estrangement. Me showing up with one seemingly made a statement, that i'd "chosen sides." Doesn't matter how I phrase it, no acceptance that there's no motives, no plan, no goal other than to see that mother's taken care of. And #2 -my longtime best bud and partner in crime- wants to hear me over the head with his views, assumptions, and arguments about the other brothers. Just STOP already!! 

Took a mental health day from work yesterday, and that's also a cluster. I work for older brother, have for years. I managed one of his offices, the one he just had to close. We're just a few days into having everyone at the other office and I'm seeing there's no place for me there. I'm not needed. They have an established rhythm, who does what, etc. With business down, it's not like there's overflow, plus they are protecting their own jobs. I'm occupied a few hours of the day then it's busy work. It hit me hard Wed afternoon - I'm going to need to find another job. Starting over again, only at 62 this time. 

It's a lot right now and I'm not handling it well. Not sleeping well, ruminating and unfocused throughout the day. Agitated and edgy. I know this too shall pass, it all hit just this week and it'll settle down. That's what I keep telling myself. 🙃

[NarcKiddo]

I'm sorry you are struggling with all of this. I keep thinking about it - partly because there are some similarities with my MIL who is in her 90s. She, too, was in hospital earlier this year and played up, would not help herself etc. And although she had gone there from a care facility she had to move to a different one afterwards as her needs had changed somewhat.

The apparent lack of recognition is just so weird. And not being scared by it. I suppose there may be an argument for her being in a new facility so all staff are pretty new to her. Strangers wandering into her room may be a usual occurrence right now. But then the texting afterwards does not sit right, because why would she even think about it afterwards, or remember it? Unless brother number 2 had complained to her about the whole thing. My comments on your situation are probably not helping you on the rumination front, so I will stop.

But in the case of my MIL, she has got to a stage of blanking her children. She refuses to answer their calls most of the time. When she does answer she then complains that nobody phones! They have phoned her by arrangement with a member of staff to make sure she has the phone, answers it etc, and she just waits until the staff member leaves the room and switches the phone off, without a word to the caller! The comment made by a previous poster about trying to hide confusion rings true in the case of my MIL. My husband has said as much. Also she has a history of lying but it seems she now realises she does not have the mental faculties to do this successfully so it may be easier just to play dumb.

I'm sorry to read that there are issues on the job front. I hope that works out for you. What it does underline is the need for you to take care of yourself. Your mother is safe and cared for, so I hope you can start to let concerns about her go and concentrate on you.

[treesgrowslowly]

Hi Moglow,

Once we've seen what our PD parent is capable of - we're wise. We're wise to the fact that trusting them or believing their acts never feels good. So you seem wise to me, you are wise to go with your gut on this and your sense of what to trust and what not to trust.

It seems like there tends to be one person in a family system who sees things as clearly as you do, and the rest stay in some fog, which is hard on the one person who is not in the fog.

We're so used to spending energy figuring out things in families like these, because everyone's behavior is so hard to navigate. Like you said, there's some triangulation, which sucks for you to deal with on top of everything else.

I'm glad you are getting support here with this community. People here get it.

Trees

[xredshoesx]

1) i'm glad neither of you went alone
2) I think you are correct and she may be acting/ faking the memory loss
3) if your #2 wants to run the show at this point, after this all happened.  let him. 
4) the office consolidation stress.  I'm sorry. 

sending strength and support. 

[bloomie]

Moglow - what I think of in all of this is that the real damage is coming from you even having to wonder if MD is faking. That you know she is capable of doing that and would do that to her family is enough to deal with. There are no helpful definitive answers and all options... dementia or faking, are awful to face.

The strife and distrust with your brothers, though heartbreaking and distressing, makes perfect sense given all you all have been subjected to all of your lives with MD. How painful to see that unfolding when I imagine you just want to ask them to not let the dysfunction and division sown into all of your relationships with each other by MD win.

As for work... my hope is that as things settle you will be able to see clearly the lay of the land and if there is a place for you there. Right now, is it possible to go with the flow and give yourself a chance to recover from this latest round with MD?

[Blueberry Pancakes]

Sending my support.

You mention feeling agitated and having disrupted sleep. Yes, I think I sort of get that as I felt similar when I moved both parents to assisted living a few months ago because their living conditions at home had become unsafe. I had previously been no contact with sibling and VLC with parents for six years. Even with awareness of the dynamics and having no desire for reconciliation, I believe just being around it was an overload.

I wish I had magic words, but I will say I trust you. I trust your assessment of the situation. I trust you have the tools and abilities to get to the best place with this. Thinking of you. 

[moglow]

Hello all - in conversation with #2 yesterday, he said specifically and unprompted that he can't really tell if and how much she is faking. That she seems to be enjoying the attention and like a mean naughty little kid, bad attention is better than none at all.

Without too much detail, suffice it to say she does nothing for herself other than eat, and does not make any attempt to leave her bed. She claims they snatch and handle her roughly when cleaning her up. And yes that's exactly what I mean. She does *nothing* for herself. And it's deliberate, because she will buzz nurses station afterwards then complain that they take so long to respond. No recognition that they have all those other patients to care for. Or that possibly if she'd buzzed them ahead of time for assistance thing would be very different.

I tried texting with her this morning, asking about her supposed therapy, when they see her, are there exercises she can practice between sessions to boost her strength. She blew it off with saying there's very little improvement and it's a slow process. No specifics, didn't answer my questions at all. Then "breakfast is here" and not another word from her since. This from the woman who's complained that I have no idea what's going on. Well no. She doesn't talk to me. So I'll just let it go, see if I can help brother #2 in some way that doesn't involve her directly. After all she doesn't know who I am anyway. 🙄

We're now into week three of this episode and there's no sign of any improvement, in her condition or attitude. It's like she's decided to ride out her allowable inpatient days then just go back home. There'll be no going anywhere if she can't do anything for herself, she'll just stay in that bed. Good news is brother #2 has his eyes open now and is way less than charmed by her expecting him to fetch haul and carry at her whim. Hopefully he's learning to mute her calls and do his own thing here and there. 

[moglow]

Update: I had new pajamas sent to md at the rehab center (the day we were there she was wearing a hospital gown). She sent a thank you text, and said she's looking forward to wearing them. Still not another word about her actual treatment, what she's doing, why she's there. 

My interpretation: she's preening and queening, loving the attention. That's all she sees and all that matters. Everything is done for her, she has no decisions no responsibility.