BPD mother going in circles with health care team part 2

[Notwendy]

https://bpdfamily.com/message_board/index.php?topic=357592.0

A continuation of this thread.

While in the hospital, BPD mother eventually refused the antibiotics, refused physical therapy and occupational therapy evaluations, and was reassessed and approved for Hospice care.

While she was in the hospital, her behavior was difficult- yelling at the nurses, pushing the call button. The palliative care nurse practitioner visited her twice to discuss Hospice with her and confirmed she was cognitively intact and understood the decision and the services offered and she agreed.

She is back at assisted living. Her behavior is an issue with the staff there and now also the Hospice staff as well. She is making up things about what people are doing- and if corrected snaps back at them that she wants to "tell it her way". The assisted living staff and the Hospice nurse have had a meeting with her to discuss her plan of care so that she is aware of who does what.

I had hoped- since she had refused treatment that the additonal support from Hospice- comfort care, pain medicine- would be a help to her. It has in some ways as she has medical care in place rather than to have to go to appointments which is difficult for her.

The usual supports offered don't work for her. Clergy have offered to visit- so has social work- she doesn't want them to visit. She claims that nobody is doing anything they said they would- but they are.

Nobody can do anything for her- she sabotages attempts to help her. Yet, she needs people to help her now and she's pushing the patience of these people. I am going to let the assisted living staff manage this. BPD mother still has complete control of her decisions. I have tried my best to reason with her and it doesn't work.

[Methuen]

I am so sorry.

Sadly, this is not unexpected, since everything about the situation seems to fit the worst case scenario category.

Like you say, there is nothing you or anyone else can do.   As long as she is deemed to be competent, she can do this.

It is hard to understand at a rational level why she is doing this as it is so self destructive.  But she has her own reasons.

It has the effect of being a very difficult thing for all family and medical staff to bear witness to.

Let her be NW.  You have been an  exemplary daughter in impossible circumstances. You have shown kindness and empathy, and you”ve practiced restraint when it was needed.  You’ve always tried to do what is best.  What she does is completely outside of your control.  It’s a helpless feeling.  But you can still feel good about yourself in your own heart and mind.

But this is difficult.  I am so sorry.  We are here for you. 

[zachira]

It is so sad when a person self destructs and is more focused on causing chaos than doing what is in their best interests. Cleary this is very painful and sad for you to witness, especially because this person is your mother. Do you go between feeling grounded in accepting you can't help your mother and feeling at times helpless because your mother is deemed legally competent to make her own self destructive decisions?

[Notwendy]

I feel I have done what I can to help her and so have all her caretakers and medical staff done that too. She's also draining her savings. I am grateful that my father invested in an anuity that gives her some monthly income. She spends in excess of it now. It will cover her basic needs. Without her savings, she will have to move from her room, but also, I think it's possible that the assisted living could decide they can not meet her needs on the basis of her behavior and evict her to a nursing home.

If this is the outcome, then so be it. We, her family, have made attempts to intervene. We are not going to finance her preferences or her spending above her means.

Although she did meet some criteria for Hospice, I also think this was the only path her providers could direct her to since she was not compliant with treatement and also refusing treatment. She is eating and able to walk around her room. It's possible that she may be discarged from Hospice when they reassess her.

I think a difficult aspect is the chaos. I think that is one way she maintains control. It's not possible to have plans or agreements with her. She changes her mind, and the story.

However, I have learned something from this. I did wonder if there was something I could have done for my father but I see now that there wasn't anything I could do- she was in charge and it was the same controlling chaos. I was not informed of all that went on with him.  I would try to help but without success.

Now I see that her behavior is with everyone- she has rendered everyone who has tried to help her ineffective and then is upset when they fail to succeed and it was the same with my father. She was in control of what happens -with him and also with herself.

[GaGrl]

The guidelines for hospice care have changed in recent years. The "6-month" guideline no longer drives determination for care. So it's difficult to project what your mother's providers might recommend.

My mom moved from home health to hospice when she began having cellulitis in her legs, and the oversight of her needs and medication reached a hospice nurse level. She could not walk (her entire core had weakened) but never really lost her appetite til the last week of her life.

I'm sure they are considering everything -- including her mental health.

I know that, that last seven months, I felt as helpless as could be. All I controlled was her daily care -- the inevitability of it all was overwhelming.

[Notwendy]

Gagirl- BPD mother has the same issue and with refusing antibiotics- this now shifts to comfort care. She was not compliant with wound care home health and it's the same with the Hospice nurse. They would come and wrap her legs, she'd complain they are too tight and then take them off and even has cut them off with scissors. Then she calls for them to come back and put them back on.

She's fixated on these leg wraps and now that she's on Hospice- she doesn't have to have them but she's fixaed on how they are wrapped and with what and doesn't think anyone knows what they are doing and complains about them. She has always refused to wear compression socks.

An aide from Hospice came to help her bathe but BPD mother refused because she might get the leg wraps wet which is utter BS -it's just the reason she comes up with. Whatever anyone does- she finds something they did that didn't suit her.

This is the same situation as with my father. Whatever home health person came over to help- they'd end up dismissing them for some "reason".

She didn't like the Ensure drinks so I sent her a case of a different kind of protein drinks and she called me up to let me know she didn't like them and that she likes the Ensure better and that there are more grams of protein in Ensure.

She's now complaining to me about the Hospice providers. I think they have realized there's more to her mental health issues than they realized. I didn't volunteer information when they called me to introduce themselves- I wanted them to meet her and decide for themselves rather than set an expectation- they are the professionals. I hope they are able to address this but really with her denial and NPD traits, she truly believes there is nothing wrong with her and whatever issues are someone else's fault.

I can understand that physically, things are unpredictable for her. What is predictable is that her rate of spending has been fairly constant and looking at her savings, they are expected to be gone in a few months. She will have to move from the room she's in now. The assisted living had her look at smaller rooms- as we had encouraged this to be proactive. She refuses to move. So it's going to be a forced situation and with her behavior, it is possible the assisted living might evict her if she doesn't cooperate with them.

It was almost a year ago that we had to urgently move her out of her house before the bank repossed it as she also refused to move ahead of time but she didn't seem to grasp the situation. I am not sure she "gets" the gravity of her spending either- I think there's some magical thinking there. She didn't want to be treated in the hospital so she had to be discharged but protested that saying she didn't feel "ready" to leave just yet. But it's not her choice. Medicare is paying the bill. She doesn't get to just stay or go if she "feels like it". So she was discharged when it was decided.

Trying to discuss her spending with her is useless and she argues over it. Then acts like she's being deprived by our suggestions. There's no point in trying to preserve her savings from her spending- there's not much left to make a difference for her anyway if it was saved. But if she is forced to move, she's going to be very upset and angry and act as if someone is doing this to her.

This is between her and the assisted living. I don't have any input to her behavior or her spending- so whatever happens is going to be between them and her. So yes, what happens physically with her isn't predictable but also wondering about her behavior and financial issues are too.

[Mommydoc]

How heartbreaking this sounds NW. I had hoped that hospice would be a relief for you and for her, no longer trying to encourage her to accept treatment. Her mental illness will hasten her decline from what you have said. I love your perspective that this is between her, and the assisted living. They can become pretty creative with options when the money runs out… and they will be responsible for finding a nursing home who will take her, they can’t “evict her” to the street. She won’t be the first or last person to run out of money.  This is also an area the social worker can help, by facilitating an application for additional financial aid to bridge the gap and allow her to stay in her current situation.  Thinking of you and hoping for peace. 

[Notwendy]

Thanks Mommydoc- it's a great idea to discuss her situation with the social worker from Hospice. She contacted me to ask about concerns but I felt it was best for them to get to know my mother first- and do their own assessments. Also, since it was an instroduction call- it didn't seem to be the time to get into a longer discussion of the situation.

I think that the social worker has probably heard about her behaviors at this point and so I can contact her to set a time to talk more about the concerns, and also the financial situation so they will be aware of it.

[Notwendy]

I called the social worker to discuss the situation. One reason I have been hesitant to discuss her behaviors is that, I didn't want to bias them when interacting with her. It's better for them to see the behaviors themselves. The "family rule" for us was to not say anything about BPD mother, so it's not easy to speak about her behaviors to others.

She could manage financially if she moved to a smaller room. It was arranged for her to look at the rooms available. There was one that seemed nice but she decided it was "too small" and refused to move.

She called me about a large bill she received and wanted to justify why it was necessary. I told her I was sorry she was having so much difficulty but the bank, and whoever she owes money to doesn't care about that. Then she said she was "still deciding" what she wanted to take with her to the smaller room and "trying" to budget but I also don't believe what she says to me because atttempts to get her to understand why she needs to do that have not been effective.

We moved her out of her house at the point where she risked it being repossessed by the bank. I know this was the right thing to do at the time but I also don't think she grasped the reasons why she had to move and so doesn't seem to grasp why spending all her savings can be detrimental to her. I think she could potentially stay in her current room until she is forced into another situation because she is not going to choose to move to a smaller room voluntarily but you are correct- the safety net is that the assisted living will have to find a suitable place for her, either the smaller room or another facility so she won't be without her basic needs met.

What we'd hoped for is that she could be proactive. Her savings would have given her more choices. I did alert the social worker to this situation so she could look at suitable choices for her if they were needed. I think the best solution is for her to stay where she is, in a smaller room but this will be up to the assisted living.

[Mommydoc]

This seems positive, but I agree that you should assume that she won’t act on it.  By staying neutral and letting her decide, you may increase the chances she moves forward with the smaller room.  If you encouraged or tried to influence her to move to the smaller room, it would likely cause her to resist!  It is good that the social worker is looking into financial options, as they can have some contingencies planned.   If the assisted living doesn’t get full payment at any point, the issue will get forced. 

I agree with not labeling your mom with the social worker.  They will observe the behaviors on their own.  I did the same, but when the behaviors are observed and surfaced by the health care team, it is helpful to validate the teams observations, as the team often isn’t sure of the families level of awareness and likely don’t want to put you on the defensive.  A benign comment, like “yes, this is common behavior for my mom”  might be a helpful insight and sends the signal that it is OK for them to surface concerns with you. After months of crazy behaviors from my sister with the hospice team, at one point, more to support them than to label her, I mentioned, “Yes, my sister sometimes exhibits BPD like behaviors.”  It felt like the right thing, as they were trying so hard to manage and support her and despite extraordinary efforts, they didn’t feel successful.  I wanted to let them “off the hook” and let them know it was not them but her.   Soon after the hospice nurse responsible for her care, started saying to her team, “it’s just who she is”. 

The great thing about your mom being in hospice, is that she has a team who is focused on her well being, and it takes a lot of the responsibility off of you NW.  Allow them to be a buffer, to have the conversations you might feel you should have.  They are not as emotionally invested as you, and can be objective.  They will try and then at a certain point, they will accept that “it’s just who she is”.   It can be a huge gift to you.  Your mother will likely run out of money despite your efforts and the situation will get forced, but she will still get the care she needs.

[Notwendy]

Thank you!

I didn't use any labels. I usually don't unless one of her health care team mentions "personality disorder" to me. I see where they are stepping lightly on the topic of her behavioral issues- as they don't know the extent of my awareness of them. So I do let them know that I am aware and these are long standing behaviors. If they were new ones, that would be a different situation such as concerns about onset of dementia which she doesn't have. This is her usual behavior.

Conversations get awkward as the relationship is not what people expect, such as why her children are not involved more. I have shared that it is not a cooperative relationship and that we have to have boundaries. I also share that I didn't have access to her financial information until less than a year ago, and so didn't know what she was spending until recently so they know how little information we had. The social worker supported the boundaries- I think they have seen this kind of situation before.

It's difficult because she is so inconsistent- one can't be proactive with her. I am glad she has the support of Hospice in place.

[GaGrl]

Conversations get awkward as the relationship is not what people expect, such as why her children are not involved more. I have shared that it is not a cooperative relationship and that we have to have boundaries. I also share that I didn't have access to her financial information until less than a year ago, and so didn't know what she was spending until recently so they know how little information we had. The social worker supported the boundaries- I think they have seen this kind of situation before.

NotWendy, my cousin is a social worker who has specialized in home and hospice care for 20+ years. She was an invaluable help to me as both my parents moved into home healthcare and then home hospice. She has also worked with many family members to understand insurance, Medicare, and personal financial structures for end-of-life needs.

And believe me...the social workers have seen everything!! Much more and more terrible than most of us could imagine. Sometimes it is the behavior of the patient. Sometimes it is the behavior of the patient's family members.

Your mom is where she can get the best care. That is a comfort.

[Notwendy]

Yes, it is. She still complains about someone or something not doing something right or being inadequate.

I just said to her "It seems everybody has let you down in some way" and then just said a lot of "I don't know" to her questions- truly, I just don't anymore. Questions like if she moves to another room, what to do with her stuff? I just said "I don't know". If I made a suggestion, she'd find some reason why it won't work as she refuses to move to a smaller room.

Once her savings are gone, she will have to move to a smaller room anyway. If that's how she wants to do it- under a forced situation by the assisted living,  then that is her choice. There's no point in trying to discuss it with her.

It's hard to know if what she says is true but another person- someone in her room, texted me that a staff member yelled at her. I am looking into this. I think the person is being honest but also know that my mother has completely "won" her over to her side and I have known my mother to enlist people to say things for her. Still, it was first hand and if it's true- then this needs to be addressed. I know she can be verbally abusive to staff- and it's possible she has emotionally stressed this person out- but if the staff is stressed out- that needs to be addressed at the staffing level. Staff may need to be rotated with her. They should no be yelling at her but also they should not be expected to tolerate verbal abuse.

[Notwendy]

She is much better off with Hospice care but she won't acknowlege it.

This is just a vent but she's impossible to reason with. Everyone and everything is wrong in some way with her. And she claims "innocent".

I told her I asked about the incident with the yelling- the head of nursing came to speak to her. Her reply "she didn't report it- she had nothing to do with it".

The Hospice nurse comes twice a week to wrap her legs and put cream on them. They are stable at the moment and I told her that. Her reply is "the nurse is doing everything wrong" and "so she comes twice a week but nobody comes in between".

Doesn't matter what benefit there is- she focuses on what isn't being done. She thought she had a bladder infection and says they are doing nothing about it. I reminded her that they sent a urine sample out for testing the other day. Her reply- why didn't they do it sooner?

Then she gets waify over her rate of depleting her savings and she gets all waify "I wanted to buy a book for $14 yesterday" or "can I even get a haircut?" as if she's been asked to live in poverty all the while being in her nice spacious place in a good assisted living center. Nobody is worried about her wanting a book or a haircut but without her savings, she will need to move to a smaller space or somewhere else if the assisted living decides that. That will be between them and her.

People aren't perfect but surely they can't all be all wrong, and it's pitiful that this is how she perceives them.

[Notwendy]

Also, yes, I do validate her feelings during these times too. There's a lot of "I understand you are feeling poorly" "Sorry this situation seems so difficult" and so on. The positive is a bit of SET- "yes Mom, they sent the urine test so hopefully the results will come back soon".

And listening- just saying nothing and listening.

[Methuen]

I just said to her "It seems everybody has let you down in some way" and then just said a lot of "I don't know" to her questions- truly, I just don't anymore. Questions like if she moves to another room, what to do with her stuff? I just said "I don't know". If I made a suggestion, she'd find some reason why it won't work as she refuses to move to a smaller room.

This is brilliant NW. It's a way of disengaging from the chaos she causes with all her complaints about everybody else not doing anything right.

After reading your last two posts, it occurred to me that all her complaints are her way of engaging and drawing you (and others) in to her.  This is her MO. By saying "I don't know", or "mmmm" or "I'm not sure", you are changing the game and not getting drawn into her complaints. 

All that complaining she's always done, is somehow working for her because she keeps doing it.  It's giving her something - meeting her needs somehow.  Is it possible to either have less direct contact with her (so she doesn't have the opportunity to complain to you), or distract her when she starts complaining (my mom has severe ADHD so this works well in my situation), or excuse yourself from the conversation so that negative reinforcement has a chance to work?

There's a saying about people who see a glass half empty or half full.  I think pwBPD see the glass all empty, regardless of how much water is in it. 

One time I was at my mom's house recently, she had a friend there.  Mom went down a path of negativity again, and her friend actually reminded her she was being negative, and simply said "think positive!".  I couldn't believe it.  Someone actually checked my mom on being negative!  I nearly crapped myself. I was surprised when mom actually stopped talking.  She really likes this friend (who happens to be the nurse that delivered me when I was born).  I wouldn't have believed it could work if I hadn't seen it myself. Our mom's are different people and this probably wouldn't work with my mom if it came from me, or with your mom at all, but it was a lesson for me nonetheless.

Out of curiousity, does your mom know how much her complaining bothers you?  Even if you believe she wouldn't care (due to lack of empathy) I wonder if it could still be possible for you to articulate your feelings, state your boundary, and then take appropriate actions to hold your boundary. I just finished reading a book written by Nedra Tawwab called Set Boundaries: Find Peace.  I found it extremely helpful. It's a newer ish book. I think being raised by mother's with BPD can result in us not knowing we can set boundaries, not knowing how to set boundaries with them, and in my case, being very scared (for good reason) in setting boundaries.  Tawwab gives a multitude of examples and tools and strategies for addressing this.  The rationale is sound.  I found it helpful.  My T recommended it.  Maybe you've already done all this stuff, I'm just kind of throwing out ideas to see if anything sticks or could be helpful right now.

This is just a vent but she's impossible to reason with. Everyone and everything is wrong in some way with her.

For a lot of us, I think "impossible" perfectly describes a pwBPD.  I can hear my father's voice now (from when I was a child - he passed 20 years ago), saying in a calm but frustrated voice that she was being "impossible".  Now that he is gone, I am 61 and "responsible" for her, I fully and completely understand what he meant.  Reasoning just doesn't work with a pwBPD.

People aren't perfect but surely they can't all be all wrong, and it's pitiful that this is how she perceives them.

Yes it is.  It's a sad disease, but our mother's had a lifetime to work on personal growth, and chose not to.

So to get back to your first point saying "I don't know" to her - brilliant.   

[GaGrl]

The negativity just wears one down. My stepdaughter experiences this with her mother. Our granddaughter was in a car accident that totaled her car several weeks ago. She got a generous insurance payout, but it wasn't enough to buy the later model car she wanted. She proposed that she buy our car for the insurance payout, then we could buy a new car with a large down payment. We had to remind her that we had given her the first car before we retire, I am now on a fixed income, and Papa's business has been very slow this past year. So...she comes up with a plan to borrow from her uBPD/NPD grandmother. Never a good idea -- There are always strings attached. Of course, the bank placed a hold on the personal check, so the car can't be picked up til the check clears. This is now uBPD/NPD's constant topic of conversation, in a complaining g, negative manner.

Today, my stepdaughter finally had to tell her, "Mother, there is nothing that any of us can do to speed up the process. I can't listen to the negativity -- I'm too tired and stressed. I need you to not mention the check or the car for the next 24 hours. Please."

She's becoming quite adept at working with her mother's mental illness. Sometimes, on the phone in the morning on the way to work, she just says, " Mom, I can't listen to negativity on my way to a client. I'll talk with you later." She is a Medical Licensed Massage Therapist, really can't take negativity into a massage.

[Notwendy]

Thanks Methuen- I have ordered that book on Amazon. I have worked on boundaries before but I think we are always learning and working on it. I think what has changed to have more contact is her health changing, and being at a distance- we speak on the phone more than we did before. However, I still keep the emotional distance and don't emotionally react to her comments or share emotional information.

It's such an odd feeling- on one hand, we don't have the usual parent- child bond but - still I have empathy for her and for her situation and want to do the best I can for her- with boundaries and not living near her helps. I still can be "of service to her" by checking in with her medical providers, and doing some things for her long distance. It's the doing things for her that seems to meet her needs somehow. I think somehow I still feel obligated as it's just not the norm to keep a distance but even my H states it's necessary. He's seen her behavior.

But I will take the advice to distract or disconnect from the complaining. With her, it's better to not say anything and just disengage. Saying anything to her she turns it around and repeats it. We were talking about her finances and I mentioned that creditors don't care about reasons - they want their money. That "don't care" became a part of her comments. "I know you don't care, nobody cares"..... and finally I did say ''enough of that taking the comment out of context- you know better than that" and she stopped.

[Notwendy]

So an update on BPD mother. She hasn't been calling me with complaints- maybe because I have spoken to her care providers and so have heard what they are doing. She has called some family members to tell them that "Hospice has done nothing for her" but when I speak to the nurse,  they are doing a lot for her but she is refusing to comply or accept a lot of it. Of course, family members hearing only one side call me and are concerned.

She thinks she may have a urinary infection but they have sent cultures and tested her urine and she doesn't. They did a bladder scan while she was in the hospital a few weeks ago and that was normal. The nurse examined her and thinks the discomfort may be from a skin irritation and so they got her some cream for that. The nurse asked if she wanted antibiotics but she has refused them in the past too.

They have offered her other ways to manage the urination concerns but she refused them too. There is nothing more they can offer her for this.

The social worker from Hospice has come to her room to try to visit with her and she's refused to speak to her. I hear she finally agreed to speak with her recently.

She also refuses to bathe or shower (with assistance so she isn't a fall risk)  This isn't new behavior but it's also not like her as she's mostly been meticulous about her appearance. She will let someone come do her hair- at her choice and high cost styling - but she won't let someone assist her with taking a shower?

This behavior doesn't make sense- it's crazy- and yet, she is still self directed. They can't force her to accept any treatment or assistance with toileting or bathing.

It's been a help to her to have the nurse come to her. Before that, she had to get someone to help take her to appointments - and her mobility is limited and it was difficult for her, sometimes she couldn't get there in time or had to miss appointments. There was the option of a nurse practitioner who comes to the assisted living but BPD mother wanted her own doctor who didn't make home visits. That is understandable but it also was difficult for her to get to the office.

Ironically, her legs are doing better. She didn't comply with more intense treatment as it was uncomfortable for her so she didn't do it and it didn't work. She seems more able to tolerate keeping her leg bandages on now.

It feels uncomfortable to not jump in and tell her to "get off Hospice" when she says she's miserable and they are "doing nothing" for her. Nobody wants to feel responsible for a decision to not go full treatment and I think her telling family members that people are doing nothing for her puts them in this kind of bind. I remind them that it was recently that I jumped in and had her sent to hospital where full treatment was offered to her, she refused and this is how she is on Hospice now and that she can make her own decisions about what she wants to do.

What she is doing is how she doesn't have to assume responsibility for her choices and shifting that decision on to someone else. We are so used to being in the role of rescuer for her. I have seen what happens when I have tried to make decisions on her behalf that I believe are in her best interest and she has sabotaged them, taken control and done what she wants. She can stay on Hospice or go off it if she chooses and she knows it. Family members can make their own decisions about what to do for her too.

It's hard to see the extent of my mother's discomfort and unhappiness. She claims that "Hospice lied to her" because they told her it was care focused on comfort. They didn't lie. It's that it seems that people try what they can and she either refuses it or it doesn't work.

[Turkish]

So sad and frustrating...

Are you willing to let it go? Is this an option? First, realistically; second, emotionally?

[Notwendy]

Do you mean make the state her guardian? Even with all the behaviors- she is still self directed and so we don't have legal grounds to make anyone, including me, a guardian. I have power of attorney but can't make decisions for her.

Emotionally- it's interesting as we have not had the kind of emotional bond between a mother and child but there are feelings that have come up. This experience has actually helped me to understand the situation with my father in his elder years as it was so irrational and illogical I couldn't comprehend it- but with BPD mother in control at the time, it makes sense.

As a child, if I mentioned any of my mother's behaviors, it was met with denial. It was a family secret. Even as a child, I noticed something was different about her and by high school I knew it was in the realm of mental illness but it felt like the "emperor has no clothes" in my home with the adults in the family pretending that what we kids saw didn't happen. I don't wish this mental illness on her or anyone- but now that this is apparent to professionals it can be addressed.

This is frustrating and has required time and emotions but I did want to be involved in my parents' elder years for various reasons. I think also it was a form of "wishing for normal" and this is just another variation of how the relationship isn't "normal".

I think we learn what the outcome is from trying. I see now that the outcome of what we have tried so far is very much in her control and I don't expect her to respond differently.

[zachira]

Seems like you have reached the point of radical acceptance. It is such a long journey when we have a mother we can't have a healthy relationship with because
she is unable to do so no matter how hard we try. It has helped me to feel sad for my mother with BPD for how impaired she was AND how she made things so much worse for herself and others.

[Notwendy]

Seems like you have reached the point of radical acceptance. It is such a long journey when we have a mother we can't have a healthy relationship with because
she is unable to do so no matter how hard we try. It has helped me to feel sad for my mother with BPD for how impaired she was AND how she made things so much worse for herself and others.

Yes, exactly- and bit of being astounded at how affected she is with her BPD. As a kid, this was somehow "normalized" for us but as an adult, I have a different perspective.

[zachira]

So much respect for you for reaching radical acceptance. It takes a lot of soul searching and reaching out to get there.

[Notwendy]

So much respect for you for reaching radical acceptance. It takes a lot of soul searching and reaching out to get there.

Thanks, I attribute this to interacting with her as an adult. It has been difficult but also I have learned a lot from it. As a kid, I knew something wasn't OK but also with the level of denial from both my parents, it was confusing. It felt like the emperor has no clothes story. Her behavior isn't subtle but my parents somehow were able to mask it well.

If not for my father's support, I think she'd have been in a mental institution. It may have been what she needed though, although I know he could not bear to upset her. She needed to be percieved as "normal".

I instinctly knew to not leave her alone with any child. Since she visited with my father, this situation didn't come up. I was always there too. However, when the kids got older- like the oldest around 12- I did think it was OK to run a short errand with both of them there. When I returned, my oldest said "please don't ever leave us alone with them again".

They didn't hurt my kids or do anything hurtful. My kids loved my father. But my kids were able to have a different example of "normal". It was the chaos, the craziness they sensed and they felt the discomfort in their presence.

I am not happy about how BPD affects my mother and wish she could manage better- but seeing how affected she is has affirmed for me that my sensing something isn't OK with my mother was real because that perception was not acknowleged before. I am astounded at how mentally ill she is. Yet, if motivated she can pull it together for a brief assessement and is convincingly "mentally competent" to others.

[zachira]

The hardest part can be seeing how our mother with BPD can pull it together when she feels the need to convince other people that she is okay. As children of a mother with BPD, we often feel so misunderstood and invalidated because nobody sees what we are going through with our disordered mother and how it affects us. Some of your mother's relatives, the staff who work with her on a regular basis, and members on PSI get it. It took me a long time to understand your situation, because my mother had more of a genuine split personality AND at times she was very generous and caring. You don't seem to have any positive experiences with your mother, that when alone with you, she has always blamed you for how she feels inside. You have been very successful in your life: have healthy loving relationships with your children, been independent financially since you were a young adult, etc., I still continue on the long road to becoming a mature adult, as I was enmeshed with my mother's emotional system for most of my life and the main part of my radical acceptance is to accept that I have done pretty well in many ways considering how I am a scapegoat since birth of both my immediate and extended family. We are both lucky to have the self awareness to know from an early age that our mother with BPD was not normal and to recognize we are not to blame for how our mothers treat us.

[Notwendy]

Zachira- I think gaining perspective and independence is harder for the enmeshed child. It's hard to be the scapgoat child too, but the attachment is different. You are right- I don't have postive childhood experiences with my mother. My mother is too overwhelmed with her own emotional distress to be genuinely caring.

Gaining indepence was important- I didn't feel a sense of security that my parents would "be there" for me if I needed them, so I could not risk needing them at all- for anything. I don't even see it as skill or accomplishment- I knew I had to do it.

I think we have all been on a path to clarity and independence- at our own pace- right?

[zachira]

Yes, we are all on our on our path and clarity at our own pace. What allows for us to see we need to chart our own path to be independent emotionally and financially from our parents is different for each person with disordered parents. You are lucky in some ways and not in others, that you knew early on that you could not count on your parents to be there for you. I was very confused by the split personalities of my parents because at times my parents were actually there for me. Most of the time, I was expected to hide my feelings and thoughts while going along with the rigid family structure in which each child was expected to conform to the role that they were assigned. Being the scapegoat, I had no choice but to rebel as I truly believe if I had not done so, I would have been dead a long time ago from some kind of suicide: either direct suicide or indirect suicide by making extremely precarious life choices. We are indeed the lucky ones, as we do get it, and have become people in our own right. I have so much respect for you, in that you protected your children and did not allow them to be alone with your mother when they were young and vulnerable to her influence. I have no children, yet I feel I have a role to play in helping others. I am currently friends with a man who is young enough to be my son, and whose mother with BPD is deceased. He has thanked me many times for helping him and he has gone out of his way to do things for me. This is a big change from my past efforts to help people who were narcissistic and scapegoated me as soon as I said no to them and/or insisted on having a more emotionally reciprocal relationship. We are all a work in progress on PSI. You have helped many people on this site, and we are all learning from your journey.

[livednlearned]

I was very confused by the split personalities of my parents because at times my parents were actually there for me.

In some ways it seems like Notwendy, your father was the other half of the "split personality." They behaved almost like one person.

[Notwendy]

In some ways it seems like Notwendy, your father was the other half of the "split personality." They behaved almost like one person.

They did- and this makes sense. I think it's harder to understand his behavior. Although he was co-dependent, he wasn't mentally ill, and he was highly functional. I think he cared a lot about us kids, but also, how does someone choose to "not see" her behavior? We kids were exposed to it. I know that whatever we experienced, he did too. It was a tough situation for him. I think at one point he just became enmeshed and went along with her.

[livednlearned]

I can't remember where I heard this -- maybe a podcast? -- it was a psychologist discussing the most difficult kind of clients in his practice. He said codependent men in abusive relationships were often the most stuck. It was like they were stuck in a limbo that that no amount of talk therapy could reach. I don't know why this would be different than codependent women.

My former therapist told me she encouraged her most stuck clients to get into group therapy because the dynamic shifted in ways she couldn't get it to when she worked 1:1 with certain clients. If that person left group, she figured he or she was likely to stay in the marriage no matter how bad it got.

Did you father have a support network beyond your mother? I sometimes wonder if it feels like clinging to a half submerged log in freezing temps is better than clinging to nothing at all.

The man who married my husband's ex wife seems like a more tragic person than H even though they chose to marry the same BPD person. H has a circle of friends who regularly check in with him and vice versa. According to my step kids, BPD mom's new husband is pretty much friendless and he makes no efforts to meet people.

It could be that BPD mothers like yours require too much time and attention and become all-consuming for their partners, making it hard to summon the tremendous strength and energy necessary to walk away, including overcoming the wave of guilt and obligation, not to mention fear that often accompany these relationships.

Following your mother's situation is heart-breaking because it's almost like she's treating the health care system like a spouse she's fighting nonstop, and you are the one left trying to manage what is ultimately unmanageable, much like what your father must've experienced.

Meanwhile, you are remarkable    Even though we only know each other here, and I can't quite put my finger on what it is, I feel something that is hard to put into words reading what you're going through. I think it's the very private emotions we experience in families where no one is there to protect us. It's a certain kind of heaviness and even powerlessness, where we can't fully express who we are because a parent makes that all but impossible to do.

Sometimes I feel it elsewhere on the boards but it's often most palpable in threads about aging or ill or dying parents. It seems stunning that even now, as they get sick and are close to death, there is no relief from the emotional illness and in fact it seems to get stronger. I saw this when my mother was hospitalized and the dynamics between her and my father, and them and me -- it was hard to believe that even then we could not sync. I had this almost numbing realization that there is virtually nothing I can do to influence how they manage her health, even though my husband is a respected physician and was willing to advocate for them on their behalf.

Neither of them has a PD to my knowledge but they have virtually no differentiation of self. I don't know that there is much anyone can do when someone is like that, especially when they are adults. It makes it very painful for us as their adult children to stand by relatively helplessly. It's like we have to be there to bear witness while having no say in reducing their suffering.

It's quite a strange kind of pain that is hard to communicate to people who haven't lived it.

[Notwendy]

I can't remember where I heard this -- maybe a podcast? -- it was a psychologist discussing the most difficult kind of clients in his practice. He said codependent men in abusive relationships were often the most stuck. It was like they were stuck in a limbo that that no amount of talk therapy could reach. I don't know why this would be different than codependent women.

I would agree. I think it's due to gender roles and the different ways men and women present with BPD. My mother was pretty, petite, and could make my father feel like a hero. She was also financially dependent on him. I think that co-dependent women might have a different role for an emotionally disordered BPD man who acts out in different ways. I also think there are less resources for men who are in abusive relationships than for women, making it harder for them to seek help. I think men who are in abusive relationships feel less supported or even believed if they speak out and I think this is an area where more support is needed.

My former therapist told me she encouraged her most stuck clients to get into group therapy because the dynamic shifted in ways she couldn't get it to when she worked 1:1 with certain clients. If that person left group, she figured he or she was likely to stay in the marriage no matter how bad it got.

Did you father have a support network beyond your mother? I sometimes wonder if it feels like clinging to a half submerged log in freezing temps is better than clinging to nothing at all.

The man who married my husband's ex wife seems like a more tragic person than H even though they chose to marry the same BPD person. H has a circle of friends who regularly check in with him and vice versa. According to my step kids, BPD mom's new husband is pretty much friendless and he makes no efforts to meet people.

What I saw with Dad was a change over time. He had a professional world that he enjoyed very much. He was able to get out of the house and be with colleagues. We had child care which I found odd. Most of my friends didn't have child care. This was the era where most women didn't work outside the home and BPD mother didn't either.

I know now that there were reasons for the sitters- one was for us but the other is that it would mean another adult was in the house. Similar to my own decision to not leave a child alone with my mother. However, we still were alone with her at times and when we got too old for a babysitter, we were alone with her. In the evening when Dad was home, and the sitter gone, we saw the dynamics, the arguments, and BPD mother's behavior.

I think two events promoted more enmeshment between my parents. One was that we kids grew up and left home. I think in a way, we provided a "reality check" for Dad. Not buying into BPD mother's distorted thinking may have caused issues but as older kids, we were also other non disordered people to interact with. We'd bring our own ideas and world into the mix, like asking Dad to help with homework. It may have been easier on them once it was just the two of them but then, the home became like an insulated bubble. The other event was his retirement. He still made an effort to get out of the house to do his own interests but without the boundary of having to go to work, he spent more time as a caretaker for BPD mother.

It could be that BPD mothers like yours require too much time and attention and become all-consuming for their partners, making it hard to summon the tremendous strength and energy necessary to walk away, including overcoming the wave of guilt and obligation, not to mention fear that often accompany these relationships.

My mother's emotional needs are very large. The caretaker staff sees this. All consuming is a fitting word.

Following your mother's situation is heart-breaking because it's almost like she's treating the health care system like a spouse she's fighting nonstop, and you are the one left trying to manage what is ultimately unmanageable, much like what your father must've experienced.

Meanwhile, you are remarkable    Even though we only know each other here, and I can't quite put my finger on what it is, I feel something that is hard to put into words reading what you're going through. I think it's the very private emotions we experience in families where no one is there to protect us. It's a certain kind of heaviness and even powerlessness, where we can't fully express who we are because a parent makes that all but impossible to do.

Sometimes I feel it elsewhere on the boards but it's often most palpable in threads about aging or ill or dying parents. It seems stunning that even now, as they get sick and are close to death, there is no relief from the emotional illness and in fact it seems to get stronger. I saw this when my mother was hospitalized and the dynamics between her and my father, and them and me -- it was hard to believe that even then we could not sync. I had this almost numbing realization that there is virtually nothing I can do to influence how they manage her health, even though my husband is a respected physician and was willing to advocate for them on their behalf.

Neither of them has a PD to my knowledge but they have virtually no differentiation of self. I don't know that there is much anyone can do when someone is like that, especially when they are adults. It makes it very painful for us as their adult children to stand by relatively helplessly. It's like we have to be there to bear witness while having no say in reducing their suffering.

It's quite a strange kind of pain that is hard to communicate to people who haven't lived it.

I think you have described so well - how it went with my father. The two of them presented as one unit- to the health care providers and it was so chaotic. I felt helpless. Seeing how similar the situation is with my mother, I know now that it's not due to lack of helping- it's the chaos of the situation. Medical providers rely on patient histories and my mother's communication style is chaotic and what she reports changes.

What is it that is so emotionally difficult. If the parent-child relationship is disordered, why do we care at all? Because, we aren't disordered and this is a continuum of wanting to relate to our parents in a "normal" way and where we get that idea of "normal" from. I noticed it in my friends' parents as a kid- in relatives. This is how a mother acts and I think we want that too. Now, we are at the stage of helping our aging parents and we approach this from the model of "normal" we have seen with our peers, and our culture, but we are dealing with something different. My mother's needs don't "fit" the available models and resources for elder care.

The other is our own moral code and cultural expectations. My parents were chaotic but not amoral. BPD mother seems to have a different perspective of the "rules" but that is driven by her disorder. The set of moral codes are universal to religions and our culture and laws- a version of the 10 commandments being a foundation. So whatever our background is- we grow up knowing how to behave- don't steal, don't murder- these are crimes and also amoral.

How we treat parents and the elderly is very much a part of our moral code. The resources in place for elderly also assume families are involved in the caregiving but don't seem to have a model for what do do when that parent is abusive or disordered.

We see the model of a "normal" adult child- elderly parent. and attempt at it, but it doesn't seem to work well.

[Methuen]

It could be that BPD mothers like yours require too much time and attention and become all-consuming for their partners, making it hard to summon the tremendous strength and energy necessary to walk away, including overcoming the wave of guilt and obligation, not to mention fear that often accompany these relationships...Did you father have a support network beyond your mother? I sometimes wonder if it feels like clinging to a half submerged log in freezing temps is better than clinging to nothing at all.

I think it takes an incredible amount of strength and courage to actually leave these relationships once codependency takes over, especially if one entered into the marriage contract believing it's "for better or worse".

Following your mother's situation is heart-breaking because it's almost like she's treating the health care system like a spouse she's fighting nonstop, and you are the one left trying to manage what is ultimately unmanageable, much like what your father must've experienced.

Truly unmanageable. She has "capacity and autonomy" so the only choice left is to let them make their bad decisions and also live with the consequences, even when we can see that their decisions are bad and even harmful.  For me it has come down to learning to "let go".  Somewhere on this forum a long while back, there was a FABLE posted about "The Man on The Bridge" and learning to let go of the codependency.  That poem really resonated with me.  It's just really hard to let go when that person is a loved one, and their decisions lead to harm.

I can't quite put my finger on what it is, I feel something that is hard to put into words reading what you're going through. I think it's the very private emotions we experience in families where no one is there to protect us. It's a certain kind of heaviness and even powerlessness, where we can't fully express who we are because a parent makes that all but impossible to do...It makes it very painful for us as their adult children to stand by relatively helplessly. It's like we have to be there to bear witness while having no say in reducing their suffering.

So so accurate.

I think two events promoted more enmeshment between my parents. One was that we kids grew up and left home. I think in a way, we provided a "reality check" for Dad. Not buying into BPD mother's distorted thinking may have caused issues but as older kids, we were also other non disordered people to interact with. We'd bring our own ideas and world into the mix, like asking Dad to help with homework. It may have been easier on them once it was just the two of them but then, the home became like an insulated bubble. The other event was his retirement. He still made an effort to get out of the house to do his own interests but without the boundary of having to go to work, he spent more time as a caretaker for BPD mother.

So true.  I think it's so much worse for the spouse in your father's position than it even is for daughters of pwBPD.  As a daughter, the only way I could set a firm boundary was to return to work out of retirement. And I often resent feeling that I have to work, in order to feel safe from my mom.  And I live in a separate house from her.  A spouse who retires lives in the same house, and can't really escape unless they find the strength and courage to differentiate, or separate.  I can totally see where codependency gets worse for aging spouses, because as the social networks from work and community activities drop off with retirement and aging, they become more entwined in the smaller BPD bubble of the home.

What is it that is so emotionally difficult. If the parent-child relationship is disordered, why do we care at all? Because, we aren't disordered and this is a continuum of wanting to relate to our parents in a "normal" way and where we get that idea of "normal" from. I noticed it in my friends' parents as a kid- in relatives. This is how a mother acts and I think we want that too. Now, we are at the stage of helping our aging parents and we approach this from the model of "normal" we have seen with our peers, and our culture, but we are dealing with something different. My mother's needs don't "fit" the available models and resources for elder care.

This resonates so much for me.  It puts the finger right on the pulse of the problem.  I think needing a mother might be an instinct.  I don't know if that even makes sense.  We never stop wanting that relationship, even when we are cognitively aware we can never have it.  But it's hard to stop trying because we still care.  Also, there is no model of elder care for mothers like ours.  The medical system (and society) counts on family to support their elders.  This works fine for families where there has not been abuse.  But what is the model when there has been abuse?  I would like to know this.

Sometimes it feels to me like the health care system and all of society expects H and I to care for mom.  Of course they do.  She's my mom.

But does the health care system also expect a battered woman to care for her partner?  No. 

The difference is that in our case, the bruises and harm are on the inside, and not visible.  That shouldn't mean it's not worth recognizing and having a model for.

[Notwendy]

I think it takes an incredible amount of strength and courage to actually leave these relationships once codependency takes over, especially if one entered into the marriage contract believing it's "for better or worse".
 Truly unmanageable. She has "capacity and autonomy" so the only choice left is to let them make their bad decisions and also live with the consequences, even when we can see that their decisions are bad and even harmful.  For me it has come down to learning to "let go".  Somewhere on this forum a long while back, there was a FABLE posted about "The Man on The Bridge" and learning to let go of the codependency.  That poem really resonated with me.  It's just really hard to let go when that person is a loved one, and their decisions lead to harm.
 So so accurate.
So true.  I think it's so much worse for the spouse in your father's position than it even is for daughters of pwBPD.  As a daughter, the only way I could set a firm boundary was to return to work out of retirement. And I often resent feeling that I have to work, in order to feel safe from my mom.  And I live in a separate house from her.  A spouse who retires lives in the same house, and can't really escape unless they find the strength and courage to differentiate, or separate.  I can totally see where codependency gets worse for aging spouses, because as the social networks from work and community activities drop off with retirement and aging, they become more entwined in the smaller BPD bubble of the home.
 This resonates so much for me.  It puts the finger right on the pulse of the problem.  I think needing a mother might be an instinct.  I don't know if that even makes sense.  We never stop wanting that relationship, even when we are cognitively aware we can never have it.  But it's hard to stop trying because we still care.  Also, there is no model of elder care for mothers like ours.  The medical system (and society) counts on family to support their elders.  This works fine for families where there has not been abuse.  But what is the model when there has been abuse?  I would like to know this.

Sometimes it feels to me like the health care system and all of society expects H and I to care for mom.  Of course they do.  She's my mom.

But does the health care system also expect a battered woman to care for her partner?  No. 

The difference is that in our case, the bruises and harm are on the inside, and not visible.  That shouldn't mean it's not worth recognizing and having a model for.

From the adult perspective, it was horrible to see what my father was dealing with. Trying to reason with my mother now, I can see how much of a challenge it was for him.

I can have boundaries with her, but I also don't leave the relationship. Because as difficult as her behavior is, there's the knowing that she is  non functional in a normal way, and that her well being depends on someone overseeing her situation. The only way she could have managed if my father had left her earlier is if she were in another relationship with someone else who took care of her.

It is odd that we are expected to take care of an abusive parent. Perhaps this is a part of culture and gender role expectations. There are less supports for men who are abused by women than the other way around and so possibly less supports for adult children. What I also wish for is better mental health supports for the elderly, but it's possible they are there but BPD mother won't respond to them as she hasn't before.

Being at a distance is probably my main boundary. Still, I speak to her frequently and also to her medical team, and then relay that information to concerned relatives. I also assist her with some of her responsibilities but with her being informed of what I do. I am in the odd position of "disempowered POA". She's in "control" and her behavior is out of control at the same time.

[zachira]

It was once unacceptable for a woman to say she was being abused by her partner. It is still very risky for a man to say he is being abused by his partner or for an adult to say that a parent is/was abusive. When we do speak about our mothers with BPD who are/were abusive, we mostly are given a dirty look as most people are uncomfortable with hearing this. There are a few people who do get it when we speak about how our mother is/was abusive, however the adult children are stuck having to choose who they can trust to disclose the abuse to and it almost always falls on the adult children to be the ones to bring up the abuse first and hope that they will be helped and heard. It is a long and lonely road to have a mother who is/was abusive and a father who enables/enabled the abuse. Having a loving mother who is living or to remember is something we all wish we had because we are human and our mother is the first person we ever knew.

[Notwendy]

When we do speak about our mothers with BPD who are/were abusive, we mostly are given a dirty look as most people are uncomfortable with hearing this. There are a few people who do get it when we speak about how our mother is/was abusive, however the adult children are stuck having to choose who they can trust to disclose the abuse to and it almost always falls on the adult children to be the ones to bring up the abuse first and hope that they will be helped and heard.

There was always a sense of fear and shame about disclosing this- as if anyone found out, it would somehow be seen as a negative about me. So I also went along with the family secret, afraid that if my friends ever found out about my mother, they wouldn't like me.

[Turkish]

There was always a sense of fear and shame about disclosing this- as if anyone found out, it would somehow be seen as a negative about me. So I also went along with the family secret, afraid that if my friends ever found out about my mother, they wouldn't like me.

As I was about to graduate from high school, I started intuiting that some adults knew something was "up" and felt sorry for me. It was even my teachers and one counselor who were shocked when I was going to junior college (for which my mom shamed me) when my peers in honors and the academic decathlon were going to Berkely, UC Davis etc.  Of course I wouldn't have "turned in" my mom. I just kept going on... that said, she did drive me 100 miles to my on-site job interview in the Silicon Valley as an entry level technician, I'll give her that.

[Notwendy]

Turkish- shaming you for junior college is so uncalled for.

With the cost of college- junior/community colleges are a good way to cut on these costs. I know several students who did just fine -whether or not they went on to a 4 year school after that.

Also, the home situation impacts academics. I don't think any adults had a clue what was going on in our family, but it did impact studying and also likely yours too.  It's good your mother took you to the interview.

[TelHill]

Hello Turkish,

I am outing myself to say I graduated from one of the colleges you mentioned and went straight from high school.  Studying meant my dBPD mother left me, her scapegoat, alone.

My mom and dad were angry when I left. My dad accepted it while there. My mom still thinks it was a waste of time.

My npd brother was very nasty about it. I think he goaded a few members of his own immediate family to put me down/ridicule me in the last few years. It seemed to put a wedge between me and my extended family. 

It still happens. My last therapist was passive aggressive about it and super competitive with me. I don't mention it in my personal life to anyone unless I know them well. I'm in the SF Bay Area which seems hypersensitive (& ready to fight)  to status. (Am a fan of Thorstein Veblen. I never would have heard of him if I never went to college.)

Maybe taking another educational route was a way to protect yourself from the hazing I went through?

There's more competition these days (larger population and more push for kids to go) than when I went. Plus, it's very expensive compared to when I went. ($30k vs $2000 for a year's tuition). Definitely nothing wrong with junior college!

Notwendy, it sounds like you're mom is out of danger (yay!) but still her own worst enemy as many of our elderly and ill BPD mothers are.

[Turkish]

TH,

Shaming is BS no matter who does it. In live where you do also. My current boss went to bat for me when i applied after our former group was being shut down/laid off. The director said "He doesn't have a degree." (AA or AS means nothing, never-mind the experience and accomplishments? and my microscopy cert from the only undergrad program in the USA). "The last guy in the position had a degree and you were unhappy with him."

Almost 2 years in, they seem happy with me, and I got a big raise as well. I wish my mom were alive to see it.