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Yesterday a.m., S26, D24 and bf went to “grandmas house” (ubpd mom) and bundled  her up to bring her to the house for Xmas day.  If our kids hadn’t been home for Christmas, and “bought into” this mission, she would have been all waify and played victim and refused to come for Christmas.  She is so stuck in the victim perspective that I find it truly pathetic.  She gets a lot of attention from her friends and home care helpers from being an extreme waif.

She had a good day yesterday.  Our kids kept her occupied so she was not an emotional demand on me.  I just focussed on the work of a Christmas day feast for brunch and supper.  They entertained grandma.

Except that just  having her in my space for an entire day was an emotional demand and triggering for me.  I kept an even keel all day, but am struggling now.   I did not forsee this would happen, but observed it at the end of the day when our kids took her home again.  I haven’t been able to sleep, and so decided to post, in the hopes that it helps me to process and purge.

Having a normal conversation with her present in the room or at the dinner table is impossible.  When bf is answering a question or telling a story, she butts in and starts talking about herself - changes the topic completely.  This must have happened 50 times over the day - or maybe even more.  Everybody except her knows what is going on.  We respond by gently bringing the conversation back to where it was, although there were plenty of times the thread was lost.  

I was preparing a plate of petite desserts for a tray.  She locked onto the lemon bars, and started reaching for and eating them as I was preparing the tray.  No boundaries.  No social graces.  I had to stop her.  She didn’t like that.  If other people hadn’t been there ,  she would have accused me of treating her like her dad did.  He was her abuser.

While we were away on our holiday recently, she stopped eating.  She’s 85 and about 100 lb.  She’s been eating disordered her whole life.  I used to verbally encourage her to eat to maintain muscular strength.  I long ago gave that up.  Yesterday, she enjoyed the turkey and fixings.  Made quite a big deal of not having eaten in  weeks, but saying how good the turkey tasted.   I feel the message to me was that I haven’t been doing my job caretaking her, because I haven’t been cooking for her (away on holiday, and prior to that renovating for 3 months).  

After the kids left  with her to take her home,  I found two of her pills on our bathroom floor.  I find pills on her floor almost every time I go to her house. She drops them, and then can’t see them (macular degeneration) or reach down for them ( too frail).

There is so much more.

All day with her around was way too big of a dose for me.  But her grandkids are both in town  for Christmas, and they were bonded to her growing up.  Back then when theyvwere little, I was still enmeshed, and thought she was normal, so she enlisted our son to be an emotional caretaker.  He was the golden child.  Our daghter was chopped liver to her.  Yesterday in front of everyone mom said he played violin better than his sister did.  He only played for one year and hated it.  He was all squeaks.  What grandma announes one gandchild “was better than the other”?  D24 is now a fully qualified physiotherapist who guided grandma from her house to ours yersterday  “hands on”.  The bf looked after the walker and all the gear.    s26 chauffered. I could see she was visibly a full time job for the 3 of them.  I usually do it all alone when I take her to appointments.  But she doesn’t talk to them meanly the way she does to me.  They also don’t have a cumulative lifetime history with her. I just carry the weight of a lot of baggage from being her daughter. Her parenting was terrible- its the emotional incest and the things she did and says.  

She has refused assisted living.  This has put me in the position of supporting her with what I feel I can do, but ultimately letting her fail on her own.  She is unkept now, but has always held personal appearance above everything else.  She can’t wash her owh hair anymore, but has to organize her hairdresser to come to her house. I am just waiting for the next catastrophic event (such as another fall or stroke), which will be my fault, because one of our boundaries was to be clear that living with us was not an option.

Yesterday was too big of a dose.  It just stirred up 60 years of bile.  

Hard to get in with my T these days because she is booked up solid with the pandemic.  They all are.  I’m Also Trying to get an appointment with my Dr, but generally have to wait 1-3 months to get in with  him. Two days ago I waited on hold for almost an hour before deciding they must have gone for drinks on Christmas Eve.

Maybe if I get Covid I will have to isolate from her, and get a break.  Crazy thoughts.  The positive effects of a recent holiday have already worn off.  The root of my  problem is my mother.  I don’t know what more I can do to arm myself other than what I’ve already done. The black hole is just exhausting. I think I try too hard to do the right thing for her.  But as I set up more boundaries to protect myself, her health and aging needs are increasing exponentially.

Just trying to purge, so I can carry on.

My best advice to someone with a bpd parent or sibling is to move far away while you are young, and still can, so that you have the buffer of physical distance.

Hi

I just wanted to say thank you for sharing your story. It's like everything I read on here has a piece of wisdom I personnally need to hear.  I am sorry you are going though this emotional turmoil right now. Only time and distance seems to help, but they do have a way to bring us back to them again. My own mother is still young and seeing how she lived, it's quite surprising to see how healthy she is... Which just get me thinking she will be around a long time, and then I feel guilty for thinking I'd rather she didn't.

I can't imagine what it is to have to care for a woman who emotionally abused you all your life.  When people get old, we are often told we have to care for them, like we have to forget who they were and what they did because they are physically frail... I don't know if I agree with that anymore. My husband is of the opinion that it's on them if they are lonely, their abuse and refusal to improve and seek therapy brought them there..

I can see, from your post, that you are already giving her everything you can, and it is only fair that you give back to yourself. She should be thankful to have such a strong and generous daughter and if she can't recognize that at her age,  then she probably never will. So remember to love yourself, and no guilt. Do you have any siblings to share the load with?

Sending you hugs.

I want to thank you too. It was like reading about my mother especially the super waif behaviour and eating disorder stuff.

I managed to get out of seeing my mother Christmas day but my god she made sure everyone knew that I had abandoned her. Christmas morning she phoned me up saying she didn't want to live anymore and "don't make me". I parented her through this crisis and then she started talking some yucky sex talk about my dad (who recently died). She went off to spend the day with a friends family,  I spent the day worrying, it turned out she had a fabulous time holding court and all thoughts of suicide gone.

It's relentless Methuen but we get it. I came on here today looking for solidarity and I found it in your post.

You can never win with them and yet we still look after them and try to help. All that ever happens is we suffer for it. When she has gone from your house make sure you take some time for yourself - if you can. I wish I had some words of wisdom but I will probably be back here searching for them come next week when I will have to visit my own mother. If it helps you are not alone and we get it.  :hug:

And that feels like it's a choice on her part. That implies that she doesn't have to act the way she does towards you.

It’s a strategic move on her part. Mothers don’t need to do anything to earn their children’s love.

Thank you for pointing that out. I often miss the obvious when I am the one involved in the drama, and so appreciate your attention to this.

Riv3rw0lf and Goldcrest,

I am grateful that my story helped in some small way.  If my experience or story can help anyone else, it helps me to know that.  That is a win.  Thanks for your support.

She had a good day, but you did not, so her good day was at your expense. What price would you have paid if you had just let her not come?

I think it might be more accurate to say that she doesn’t have to not act that way, since she assumes that there will be no consequences for being mean. In transactional terms it doesn’t make any sense to invest more in the relationship if she’s already getting such great returns.

And this turns it back towards us, what we have the power to control.

My ex early on did this to me. I was angry and confused.

Many years later, the day after I rescued my mother from her hoard and cold and no heat, she literally got in my face and called me a liar. I felt like 15 year old Turkish, "what do I do other than flee?" I took her to the ex-law's house, they and I were and still are on good terms, and then it was all sunflowers and ponies. They were glad to see her, and she was glad to be valued. I was still seething and hurt.

Thank you for sharing, Methuen. I'm so sorry you had such a difficult day.


I posted recently about how we are trying to set a boundary to not allow my uBPDm to come visit us (from out of state) because it went so badly last time. I've been having such a hard time putting a finger on exactly WHY her visit was so stressful, but these quotes above resonate soundly with me. Maybe there is no specific reason why. It's just this. It's too much.

Hi Methuen,

I think we all here get it. The only thing that prevented a visit for us was distance. BPD mom doesn't live close enough to go bring her here. However, without the distance, I also would have struggled with feeling as if I am the Scrooge who excluded my mother. I could not have done that.

I too was enmeshed and didn't see the issues as clearly. My children have had contact with her. However, the enmeshment was due to wanting to please my parents, to be good enough that they'd be happy. I was aware of my BPD mother's behavior with her own children and there was no way she'd be alone with mine. Yet, she didn't treat them the same way- she is able to be "nice" when she wants to be and so acts nicer to them.

As they got older, I could see her begin to enlist them as emotional caretakers for her. One way she does this is to confide in them, align them with her to "share a secret"- and exclude me. That "secret" is telling them something negative about me. She's even tried this with my husband.

She's calculating about this.  As she shares news that is true about people, she adds little comments to the story that are fabricated and harmful and casts doubt on them. I was concerned she'd start doing this with my children. She already shares stories about any time I erred as a teen ager ( what teen doesn't do something to aggravate their parents at times?)

During one visit, she wanted the trash taken out. She began calling for one of the grandkids to come do it. The kids were busy so I told her I would take it out for her. She said "NO, I want grandchild to do it for me" and then I knew, it wasn't about the trash but to enlist the child to do something for her. Somehow, having people do things for her meets an emotional need for her and so she manipulates people into doing that. I then took out the trash for her and she pitched a fit at me for doing that. It was then that I could see what she was doing and set more boundaries between her and the kids. I felt secure she would not be overtly abusive to them, but she'd be manipulative and triangulate them against me if she could.

I think Methuen, the more you can get home help for your mother, the less you will feel obligated. Your mother won't likely be happy about that, but consider that even if you waited on her 24/7 she would not be happy either, and it would be hard on you. Even when we do visit BPD mom and do nice things for her, she's not happy. Your mother's choice to not accept assisted living is her choice.

But the food comments and the way you feel around her- yes, the feelings are understandable. I still wish for "normal" with my mother, but "normal" isn't the situation. You've been a remarkable help to yours, even if she doesn't acknowledge it.

Being the scapegoat and targeted for mean behaviors when others get treated well is very telling, that the cruelty is deliberate and planned. Methuen, it seems that you are the one person who should be the least around your mother and alone with her as little as possible. The more care you can get for your mother, which I know you are trying to do, the more relief you will get from not having to be around her so much.

The primary price I would have paid is to go against my own values.  

Despite my mom being who she is, she has still done some good things.  It was because of her that money was saved from my birth so that my first year of university was paid for.  That set up the opportunity for me to attend.  It changed the direction of my life.  I have gratitude for that.  

On a population level, I believe all of us have both good and evil in us.  Much more good than evil hopefully.  But the evil part lurks deep, and is the reason why so many good people could do heinous things in their day jobs in WWII under Hitler, but then go home and be loving and caring with their own families.  Or a less extreme  example is this: recently, at check in for a flight back from our  holiday destination, the people behind us were loud and rude and obnoxious and clearly entitled and throwing their wealth around.  The checkin process was a nightmare and took 2 1/2 hours to get through the line.  At our gate, we joked about hoping their flight was delayed (they were on a different flight from us).  While it isn’t really evil, our thoughts weren’t exactly wholesome either.  The environment definitely influenced us, and we influenced each other.  Much like our ubpd parents have been permanently shaped by their environment, in a bad way. This in turn has affected us.

Remember Darth Vader?  At the end of the day, even he had good in him.  

There are always exceptions.  I am not aware of any good in Hitler.  

Getting back to my mom.  She has done some terrible things that leave me with baggage.  It’s been a constant drip or flood over a lifetime. .  She did not know how to parent because she had the worst kind of situation for parental role models.  Thankfully I had a healthy dad.  But Having her in my space all day Christmas day was too much for me.  But she has done some good things, and I guess what I do to support her now as a geriatric acknowledges that.  I am not generally an eye for an eye and a tooth for a tooth person, and I try to focus more on the positive side of life, rather than become absorbed by the negative and  by resentment and hate.  But there have been oodles of times when I hated what my mom has said and done to me.  Now I just can’t enjoy being around her.  She is sick.  Spending time with her is just triggering.

What I do to support mom, I do because it supports my own values.  I do it more for me, than for her, if that makes sense.

It’s also my value to not be a doormat or her punching bag.  So learning to find my voice in a way that is positive communication and does not contribute to the drama has been a bit of a process, which this website has helped with.

I also have to acknowledge that in all  this , my mother has taught me from toddlerhood that it is an admirable trait to sacrifice myself for others.  The catch is  that she deliberately groomed me to be her caretaker, but my awareness of all this has come in recent years.

Darth Vader, Jesus, and my complicated mom is a lot to balance.  

I’m human and sometimes I get it wrong.  At the end of the day, the task is often simply overwhelming.

That’s when I come here to post, and process, and hear from all you good people, to find a new course correction, because somewhere along the way, I’ve gone off the rails and need help getting back on.  

So to get back to your question Couscous, I just couldn’t live with the guilt of leaving her alone in her misery this Christmas while we spent the day with our kids.  Not when she is only 6 min away.  Her waifiness plays a role, but so do my own values.  

I hear you though that she had a good day, while I was left with a bunch of messed up feelings, and unable to sleep.

I should mention that there have been a few recent Christmases where we have spent our day together with our 2 adult kids, but brought Christmas dinner to her house at the end of the day, such as last year when she had just been released from hospital.  Every Christmas has a crisis.  Sigh.


 

Yes yes yes

NW,

Just - thank you.


Helpful…

 It just never ceases to shock me how they exhibit the same remarkable but dysfunctional micro behaviors…

The trash story is relateable .  She was grooming them to accept her controlling behavior, but in a way that didn’t make it feel controlling to them, but as “helping”.  However, you recognized what was going on when she wouldn’t let you take out the trash.  Control.  I think unhealthy people have a need to control others when there was (or is) some aspect (trauma) of their life where they had no control.  We all know this, but it’s  still hard to respond to in the moment.  You did well to shelter your kids against that.  I didn’t see it  at the time and did not shelter my kids , but as adults they can  see it now.  They are still conflicted though, since she groomed them so effectively, especially our golden child son.  But they both see that she’s unhealthy and wachamole.  They haven’t “studied” bpd though to fully understand it.

Yes, the home help is critical.  She always cancels it eventually though. Her first bill just came and its $900 for a month. She doesn’t want to pay.   It’s only a matter of time until she cancels it again.  The people have such kind hearts and are so good to her.  But she can’t stand having them come into her house.  It’s a “demand” on her.  It’s driving her nuts.  Absolutely nuts.  She keeps telling me she can’t stand having people come to help her.  It’s not rational because it’s emotional.  Once she cancels the service, what Can I do but let her struggle and fail on her own?  Then of course she will feel abandoned and worthless.  Its always lose lose.  She sabotages herself and confirms her own horrid feelings. It’s bpd.

I need a Dr to commit her to care.  I don’t see any other way.  

Or am I missing something?  I’m all ears if someone  else can see clarity through my dense fog.

What was that like for you? Did you feel less spent afterwards or have less of an emotional hangover?

It seems you may need a court order giving you complete control over your mother's care backed up by a doctor stating what you need to get this.

Methuen, I think you are realizing you are coming to the fork in the road that is, indeed, getting her committed to assisted living or even long-term care ( she may already be past assisted living as a possibility) vs. leaving her in what is becoming a dangerous situation.

Bottom line -- because of her multitude of problems, including mental illness and dementia), she is beyond your capability and capacity to care for her, even on a limited basis. Her needs outweigh your abilities. And there is no shame in that. I remember when I accepted that my mom needs home nursing care -- I was over my head. It is a hurdle to be crossed to get where YOU need to be.

I don't know how the system works in Canada, but in the U.S., if a Health Proxy has not been named, one must apply to court for Conservatorship. Medical documentation and statements must be submitted to show why the person can no longer handle his/her own health, medical, and financial needs. My mother gave me Health Proxy, so I did not have to do this, but my cousin had to petition for conservator ship of his mother with Alzheimer's after his dad died.

I am also an only child (my sister died of breast cancer at age 32). It feels as if the entire burden is on our shoulders, and it is.

There will be no action you take that results in a "good" outcome. Your mother will not be happy or accepting of any action you take. But there is perhaps a way to at least protect her safety.

I am wondering if part of getting the right court order could include documentation that you are no longer able to care for your mother.

Well, if everything else had been equal, I would have had the chance to find out.  But everything else was not equal.  She had broken her arm by simply bracing herself against a wall after a stumble one week before Xmas..  She was admitted to hospital because she couldn’t use her walker, and she was in acute pain, and because I declared privately to the emerg doctor that I couldn’t care for her (and why).  What happened in hospital and after she was released  is a whole other  story.  But I was terrified.  And more than spent.  Just spent over a different situation.

What’s the same is there is always a crisis.

Yep. Been there for a while now.  Mom has had two Rai Assessments (one a year)  because of my behind the scenes work and advocacy.  She has another one coming due in January.  I’ll be reporting the truth and providing a litany of examples and evidence.  But if their assessment determines she still has capacity, there is little I can do.  

I have to make the actual assessment happe( initiate the appointment), and see how the results  play out. At this point, I must have faith that the assessment is administered by someone who knows what they are doing, and is a good tool.  

My Dr clinic is still closed, but I am calling daily to get an appointment to see my doctor, to seek advice.  

Yep.  And I’ve  declared this to multiple levels of our medical system numerous times over the past two years.  I do get support, but it isn’t enough, or long enough.  For example, I advocated and received home care support for her 3 times now, but she always cancels it prematurely.  The rodeo just keeps repeating itself, but each  time it gets worse.

My mom made me her enduring power of attorney many years ago.  But as long  as the Rai assessment deems she still has capacity, the health care system leaves her in charge of her own decisions, which is to live in her own home.  I have been told point blank by the health care managers that geriatrics want autonomy, but their families want safety.  As long as they are deemed mentally competent,  they get to choose their autonomy.

This is why it feels like I am in the untenable  situation of letting her fail.  

This is a woman who despite her frailty and stroke and fall history, refuses to wear her Lifeline in her own home, so that if she falls, she can push a button and help comes.  

This is a woman who repeatedly declares that she will commit suicide before she goes into a “home”.  

Today her grandkids (S26 and D24 and bf) visited her.  They cleaned out her fridge which reportedly had expiry dates going back to 2016.  They reported she asked them if they were going to put her in the garbage too.  She said something to S26 which got under his skin so he shot back that she had poop on her toilet seat.  She was furious.  

Guess who’s going to get dumped on once the kids have left town after Christmas…

I am grateful they can see the truth with their own eyes, and are supportive of me. 

I arranged to make crepes for brunch tomorrow.  We’re doing it all at her house.  We’re going for a walk at a  park afterwards.  The -25C should cool me down.

Hi Methuen,

When assessing a person's level of care needs, their resources are taken into consideration and this includes family members. You are in this balance with your mother as you provide a level of assistance to her. However, as her needs increase, the decision is - how much can you take on? Perhaps it will help you to decide what you are willing to do- and let home health fill in the gap.  

Yes, asking to take out the trash is not a big request. My mother knows that- this is part of her manipulations. She begins with something that isn't a big deal, but then this is followed by a series of requests- each one not something one would object to, until you are basically serving her needs one request after another. Then she'll make a request that you wouldn't ordinarily do, and if you say no, she gets upset.

So back to your mother- you do a lot for her, but is it ever enough? With my mother, it seems that any time I say no, I haven't done enough. In this case, you will be the one to decide what you are willing to do and what you need to delegate to home health care.

In the RAI assessment, are you involved in answering questions about her capabilities, or do they take her answers as the actual fact/ truth? Does someone visit her home and see her ability/inability to function in various tasks? This time, if you don't help with the conversation, do you think she can demonstrate cognitive competence?

My mom's macular degeneration also resulted in her not being able to fully see to her toileting. She had always been fastidious and reacted in a combination of anger/embarrassment when I had to talk with her about poop on the toilet. She took more care, even though she couldn't see well, but her caregiver and I made sure we Clorox-wiped the seat and handle three times a day. That's about when her caregiver started helping with showering also.

She has resources.  My dad “provided well” for her.  She pays for a gardener, a housekeeper, and the neighbour kid to bring out her garbage to the road.  Years ago I used to “help” with all that too.  But I could see where things were going.  So I pulled away and said she would have to find people to do it for her. 

She manipulates her friends into doing stuff for her.  A lot of stuff.  She is smart.  She has always surrounded herself with good people and people pleasers.  They bring her meals and run errands for her.  She uses them to meet her needs.  She keeps everything they do “a secret” from me, but I know.  Its not rocket science. 

While I was away on holiday, she had one friend who for some reason brought her meals every day.  What does that tell you?


It’s never enough.  I have delegated to home health care.  She eventually cancels it because she doesn’t like people coming into her home.  I suspect it is because they might see things about her inability to care for herself, and report on her.  Then she loses control, right?  She’s terrified of having her autonomy taken away from her.

You mentioned you talked to your mom about poop on the toilet.  I haven’t done that.  I am too terrified of her.  When I need to use her toilet, I clean it.  Her housekeeper comes once every two weeks. 

To save myself, I let natural consequences be.  To save myself.  To save myself. 

On the surface, her house is very clean and orderly. 

I do not have the power to delegate to home care.  They tell me what they will do.  Right now there is a waiting list.  I had to BEG to get them to agree to put drops in her eyes 4x a day.

She keeps telling people she can put her own drops in.  She wants to cancel home care.  Except she has Parkinsons and can’t do it herself.  She would go blind.  She doesn’t care when I tell her that.  She just doesn’t want home health coming to her house anymore. 

She may resist home health until the only option left is assisted living or skilled nursing care. That would be sad, but it would be a result of her own intractable nature and decisions.

My mom's house was always immaculate, and she took great pride in her housekeeping and person. I first noticed the poop on the toilet when my father was in his last year of failing health, and I attributed it to that. But then Mom sold the house and moved into the house we planned for retirement, and she lived there for three years with a caregiver/housekeeper coming in three mornings a week. But then we moved in after I retired and noticed it between caregiver visits, and my stepdaughter and a cousin also commented, so I had to have the toileting/personal care conversation. That's when we realized just how bad her macular degeneration had gotten. Sure enough, her ophthalmologist said she was legally blind in one eye and nearly there in the other. The conversation about needing help or followup in the bathroom really took a toll on her -- I think her impending helplessness really came home to her then.

The "legally blind" conversation may need to be had with her ophthalmologist. Just how bad is her sight?  Should an almost blind, 85-year-old woman remain alone in the house, or move to assisted living? He/she could weigh in.

If you could get conservatorship, you might be able to engage home health and caregiver assistance that she could not dismiss.

But nothing you do at this point will be acceptable. You know that.

Menthuen, I think GaGrl has hit the nail on the head here. If you can make peace with the fact that no matter what you do, you will be perceived as the ‘bad daughter’, and that the answer to the question: ‘Will I ever be good enough?’ is always going be: ‘no’, and if you can take some time to really grieve this, then I think you may find that your interactions with your mother may begin to feel less painful.

Update: I got a phone appt  with her doctor today.  I disclosed her problem coping with daily living, including her weight loss and not eating, her unkempt personal care, finding her pills on the  floor, poop on the toilet seat, loss of smell, and plenty of examples of loss of cognition.  He is going to call her in to do an in person assessment including cognitive.  Also Order blood tests, a CT scan, and referral for the elderly  services such as bath assist and meals on wheels, and also another RAI assessment.  We’ll se how long all that takes and where it goes.  My H explained that unless she is given a choice like accept home care, or go into assisted living, she would be resistant to home care.

I felt like a traitor reporting the truth, but all my family supported and said it needed to be done.  It’s just  a terrible position for a parent to put their child in.  But I have to do it.  She makes everything as difficult as possible.

Today when we were at her house making and eating crepes for lunch, she couldn’t remember the birth dates of her grandchildren. She has always known their BD’s.  A month  ago she forgot her address.

Good point NW about the “legally blind” conversation with her opthalmologist.  It is worth it to me to pursue all avenues available.

I have contacts within home care services.  I will have conversations with them  as I did with her Dr today, prior to her next RAI assignment.

Thanks for the continued support everyone, and for hanging in with me as I muddle through  this.  Kinda burned out.

I do. And what lies ahead with her emotions as all this unfolds.  

Really grateful for my H’s and kids support, and this community.  Thank you everyone.

This is surely due to her fear of abandonment. Even non-BPD elderly people fear that their children will abandon them in a nursing home in their old age. What’s important is that you know that you are not going to abandon her, so hopefully that will lessen any feelings of guilt you have for taking this step, and hopefully you will also be able to reassure her that you will not be abandoning her.

My mom feared that I would take her property and stick her in a nursing home. Maybe I didn't do a good job of validating her feelings.., and those were over a decade before APS did that very thing. At least I was kind of of the hook for guilt though I did feel guilt.

Methuen- I understand the feeling of betraying when disclosing your mother's issues. It was a big rule in our family to not do that, to act as if there was nothing wrong and so I also don't feel comfortable when doing so.

I think it helps to consider intent. Is the disclosure out of triangulation or is it to try to attain assistance for her. I think it's obvious what yours is. Your mother needs the assistance.

Yes this is important.  When I was preparing what I would say to the Dr, , one of my points near the conclusion was “what kind of a daughter would I be if I didn’t inform the truth about the current state of her health and what is happening?”  It would border on neglect, unless I became her slave to meet all her needs.

On the other hand, I was raised to understand secrets and to not talk or tell or expose. 

So it was very uncomfortable telling the truth to her Dr.  It is sad that we are in rhe position where we have to do this behind their back, rather than with and beside them. 

You are doing what is in your mother's best interests. I hope you will also tell the doctor how you are unable to take care of your mother anymore in her home because of how stressful it is for you and how it impacts your mental and physical health. When my mother refused to elevate her leg which she could lose if she did not do so and refused to get a hospital bed for her house, her doctor stuck her in a nursing home for two weeks with the staff constantly coming by to remind her to keep her leg elevated. This was in spite of the fact that my two brothers were living with her, and mom had full control of her medical decisions. We are thinking of you and hoping for the best outcomes in your appointment with your mother's doctor.

Accusations of malicious intent really are the worst, at least for me, and is actually why I ended up on this board. But I have come to understand this kind of behavior as a sort of self-indictment, or an indirect admission of guilt of their abusive behavior. But because of their unbearable feelings of shame, unworthiness (of love, forgiveness), and a belief that they are deserving of punishment, they need a way to rid themselves of these feelings which they do by attributing them to other people. ‘I am unlovable and deserve punishment’ becomes: ‘You are unloving and want to punish/destroy me’, and no amount of validation can prevent this.

Zachira I can relate to your story about your mom refusing to follow Dr orders, even at the risk of “losing a leg”. The average person wouldn’t understand and/or believe this.

Thank goodness  for this community, or we would all feel we are crazy…

Oh my mother…

So mom gets home care visits at 8, noon, 5, and 9pm to get drops for her L eye.  The drops are a treatment to hopefully prevent blindness from an acute endopthalmitis infection, and also help the eye heal so as much vision as possible might return.  

Instead of feeling gratitude for these visits, she hates them.  It stresses her out. Because she hates people coming into her house, she looks for every opportunity to complain.  Anything she is displeased with becomes a reason to cancel.  She has always cancelled home care in the past after a fall, and whilst she is still in the recovery phase.  There is a pattern.

We are in a snow storm event.  Last night about 9:30, I get a panicky phone call from her home health worker.  She is apologizing to me for being late to mom’s house because she had car trouble with all the snow, got stuck, and additionally had to spend extra time with another client. So she got to mom’s late.  I don’t know exactly what happened next, Ibut I can imagine it, since the poor woman called me almost in tears explaining what had delayed her, and repeatedly apologizing. She stated she wanted me to hear from her what had happened, since she knew mom would be talking to me about it.  

Then I get this text from mom:

“I’m going to ask to. Have. Nite canceled.

Guess what ______ the phillipeno gal came nine thirty. I told her how upset and shaky I was. She takes every spot to make extra money. She is the only one who’s always late. The drop before that was four. All the others are good

Then she ended with “Happy New Year”

I marvel at how irrational BPD is.  She hates people coming into her house.  She shows no gratitude.  She doesn’t grasp that the possibility of going blind and receiving the treatment is more important than her  dislike of home helpers. 

Is she really trying to enlist me to do her dirty work for her to cancel the care of her own treatment?  She only talks about cancelling the nite visit, but I know her and I know that is just her starting point.  Her invented accusation of the woman taking on too many clients is just her super mean imagination at work to justify her toxic feelings.  The lie accusing the poor helper of untrue things makes me mad. 

The poor woman is on shift work simply doing the home visits assigned to her by a manager.  The woman is a saint.  Her only crime is being too cheerful and trying too hard to please mom. 

The beauty of the situation is that it is an example that I think demonstrates that mom is not competent in making her own health decisions anymore.  Does that seem like a reasonable assessment? 

I plan to share this confidentially with elderly services, who are the same people that will do the RAI assessment her family doctor has just referred her for.

There is a saying that’s not very nice:  “You can’t argue with stupid”. 

I would modify that to say “you can’t argue with irrational”.  In a nutshell, that’s BPD.

The craziness reminded me of Zachira’s story:

Yes, she's repeating the pattern of firing home workers. And yes, it sounds like she wants you to do it for her...or...she's aware enough now that you have both concerns and boundaries around her care that she is carefully "feeling out" what the consequences might be if she stops the evening visit. In other words, what might Methuen do if I stop home visits?

She might have a growing awareness that she is no longer handling independent living and yet is still fighting the alternative.

This might be where you have to clearly state to her that no changes to her medical care will be done without her doctor's directions.

Methuen,
My mother too tried to fire the home health care workers who were wonderful kind people and tried to do everything to make her happy. I really got after my brother who allowed mom to send them home early telling them things like "I don't need you anymore." which meant they got cheated out of some of their wages, and these were people who needed the money. My brother told me that the home health workers were fine with going home early, though I did not see any of that happening when I went back a few months later.
I know you dread saying nearly anything to your mother yet there possibly could be some benefit in doing so, if only it is to let her know what the firm boundaries are that you are setting with her. Your mother gets away with what she does because she seems to pretty much always find ways to manipulate things to have everything her way. Now she is in a situation where she actually needs the home health care workers, can not so easily fire them, and that certainly makes her furious, to have to pay these people and not being able to manipulate you into being her full time caretaker. The poor home health care worker sounds like just the kind of person your mother and my mother would choose to abuse: kind and caring, wanting to please and feeling terribly upset by how badly she is treated. Talking with the agency that hires the home health care workers, and letting them know the many ways that you appreciate their different workers could help to keep them involved in providing services to your mother. These agencies are often well aware of what is really going on in situations like the one with your mother.

Most of these agencies have employees who are not only aware of what is going on in difficult care situations, they also receive training on recognizing and dealing with dementia-related behaviors.

Hi Metheun,

I just wanted to pop in and send a hug.  :hug: I can tell you are so tired, physically and emotionally. Even in the midst of all the work you do, your values staying strong, the care you give, it's an uphill battle against so many things, and that is exhausting. Underneath it all you are dealing with grief too. You are losing and have lost so much, and the road ahead is long with curves in it and you cannot see your way to survive around the next bend.

Try and keep up with some self care as you can. It's good to hear your updates.
 
 :hug:
Wools

Yes, Methuen, take care of yourself.

I understand your frustration. It was similar in ways with my father when he began to need home care. I think there were several factors that made this difficult. For one, my mother needs to be in control. A home health provider has their own agenda, but the dynamics in the home were focused on my mother's wishes. Ideally, the health care provider and their patient have the same goals, but even if they do- as you have seen between you and your mother- there's the need for control.

While health care personnel are familiar with mental disorders, they also don't just go along with what the disordered person wants. They may be asking your mother to lie down, hold still- so they can get the drops in. Saying that to my mother- she'd think they were "ordering her around" and she doesn't like that.

There's also a fear of discovery on their part. The "persona" my mother presents to the world is also something she chooses. If someone is around them a lot, especially someone familiar with mental disorders, they may seem like a threat to them. There seemed to be a pattern- she'd  find something wrong with the helper, then that person would be painted black and gone. My guess is that this person got an idea of the dysfunctional dynamics.

We don't live close enough to help her with errands, and doing so is an emotionally abusive situation. She seems to need to have people help her while she is in control. Maybe it allows her to unload her emotions. It's better that someone else helps her- she likely may not react like them and they are being paid for their work.

Dad planned well for their elder years and so we are grateful she can do this. She's refused assisted living, and I think it would be an unhappy situation for all involved, even if it would meet her basic needs. It would not meet her emotional needs.

Methuen, I think the drama is not just with you, it's with whoever is in your mother's circle because of the disordered thinking and emotional needs.

Thanks Wools for the support and encouragement.  You nailed it.  Many hills, curves, sinkholes, and likely even mountains to climb in the road ahead still.  What does infinity look like...?

I appreciate you reaching out.

We always remind each other on this board to take time for self-care.  First time I heard that expression was over 4 years ago, and I'm almost 60.  It's a work in progress.  Despite the pandemic, and my mother, H and D24 and S26 and I successfully travelled to paradise for 2 weeks of wellness for all 4 of us.  That was self-care.  Yesterday I was with mom for almost 4 hours transporting her to a specialist appointment, also various blood and heart tests.  Today I am staying home.  Working on my self-care plan, which involves back treatment for spasms since shovelling snow to transport mom.  

This is so bang on NW.  My mom has even used the phrase "ordering her around".  I have met her home health helpers.  They have such a gentle caring approach to care for her.  "Gentle approach" is actually in her home care binder.  She can't read it because of her macular degeneration.  Your example, is really a perfect snapshot of how she interprets the world through their own distorted lens.  I'm so thankful I am able to feel genuine gratitude for things, even in times of difficulty.  My mom can't feel gratitude for kind people coming into her home to give her drops so she doesn't have to go blind.  Instead, if one comes "late" (her interpretation), that becomes a reason to attack them and an excuse to threaten to "cancel" the service.  

This is where our mothers might differ a bit perhaps.  My mother has always been a social butterfly.  Amongst her friends, she had energy, and would say unpredictable things that they would find funny (this is before she became decrepid).  Being around people met her need for attention.  If my mom were a water glass, being around people "filled her up".  It met many emotional needs.  She always picked friends who were kind, and people pleasers.  When she was in nurses training, she absolutely loved living in residence.  I can see why.  But, like her resistance to home health helpers, she is resistant to the idea of assisted living.  She has distorted ideas about assisted living, and based on that, wants nothing to do with it.  H and I actually think she could thrive in an environment that provides stimulation and social opportunities. Instead, she is incredibly lonely in her own home.  She telegraphs this to me daily.  FOG to spend more time with her.  I don't  oblige, but navigating the constant FOG is an irritant.

 I think you are probably right.  When her eye infection first happened and she needed drops every hour on the hour around a 24 hour clock, her friends organized a respite time for us between noon and 6pm daily.  They had a schedule of people and each friend took a shift on a specific day of the week.  I sensed relief on their parts, when I was finally able to secure home care to administer the drops (which by then were only 4X/day). They were so giving and kind with their time, even though they were also in their 70's and 80's with their own problems.  They again stepped up when our family was on vacation for 2 weeks recently.  I never ask for anything from them.  I don't have to.  I know mom FOG's them too because they all seem to know when I'm going away, and just fill in the gaps for her.  I hear about what they did.  I think their assistance makes her feel important to a degree (inside she struggles with emptiness and worthiness).  Just the fact that their visits with her have dropped off, makes me think that they have a sense of duty to their friend, or the visits wouldn't drop off, right?  I highly doubt that they "get" anything from visiting her any more.  Their visits to her are likely "working" visits, as are mine.  I just can't imagine a genuine reciprocal relationship...that she "gives" anything to the relationship.  Her needs are just too great.  All she does is talk about herself and negative world views I expect, and get them to do chores for her.  It's just remarkable at how skilled she was to groom such good people to be her friends.  However, it's certainly good for me, and I'm  grateful to them all for being such good people.

The specialist yesterday got her to agree to start a very low dose of Cinimet (for her Parkinson's), she how she responds, and hopefully increase the dose slowly.  We shall see how that goes.  I am aware of the risk that actually improving her symptoms could be counterproductive to a borderline personality.

I have a phone meeting arranged for next week with the elderly care specialist who will be doing mom's RAI assessment later in the month.  She listens and has a solid understanding of the issues, and the dynamic.  She has offered support and been helpful when I have asked for it in the past.  I expect mom will have a "great day" on her assessment day.  She will perform and let her charm show.  The problem with these assessments is that they are such a small snapshot, and don't really fact check the situation.  Eg "How are you managing with your own meds?"  Mom: "really good.  I put them in my case myself.  I like doing my own meds.  I was a nurse you know."  Meanwhile, I find pills on the floor every visit.

Hence my conversation next week with the person who will be doing the assessment. All I can do is inform her.  It will be interesting to see what comes out of the assessment, and how much weight, if any, gets placed on the reports from the family.  

Grasping onto hope.

  Bingo.  I think I have come a long way in setting boundaries for what I can/can't do for my mom.  It has been hard, and uncomfortable, because she has pushed back in such reactive and mean ways in the past.  And I absolutely hate being put in a position where I have to set boundaries, over and over again.

Where I live, the "agency" is actually a branch of our public health care system.  I do take every chance I get to express gratitude every time I see one of them, but you are right, and I will make a point of expressing the many ways they help mom, and how the gentle approach is most helpful, when I talk to the elderly services consultant next week.  Thanks for that reminder.  |iiii