BPDFamily.com

Today I received a text from uBPD mom:  "Miss my family".

I showed it to H, and he just rolled his eyes.

If I showed it to anyone else, they would probably think she is just a sweet mom.  But I know you guys "get it".

We are currently 800 miles away helping our daughter and partner move back to her home town (where we live).  We are thrilled.  She and partner are excited.  She is coming to a great job opportunity, and partner has a great clinical opportunity (still finishing his schooling). This is an 8 day trip for us as we help them move.

Before this trip, we were gone for a 3 day whirlwind trip at daughter's convocation.

Six months ago, I returned to work.  I think "medium chill" is a pretty good way of describing my current relationship with my mom.  Prior to that, I have always been her "person".  I just couldn't be her "person" any more.  It was making me sick, unhappy, frustrated, angry, and feeling caged.

Then today the text: "Missing my family".

My reply:  "The family is working hard packing up a whole house.  We were tired before we got here, and now we are more tired.  Enjoy the sunshiny days, and enjoy a good nights sleep."

I just hate the FOG so much.  It's times like this when I really connect with the term "emotional incest".

The sad truth is I don't miss her or her behaviors at all.  I am so glad to be 800 miles away.  

Meanwhile, over the past few years, she has successfully groomed a new friend to be her "person".  I am speculating that she is a genuinely nice person who doesn't know how to say no, and mom has fully taken advantage of that.  Mom has many "persons".  It takes a whole army of "persons" for her to survive living independently in her own home.  It is remarkable how many "persons" she has groomed to take care of her.  And genuinely good people find it hard to set boundaries with an "old lady living alone".  They've never heard of BPD, and really, how many people are truly "equipped" to manage that kind of behavior?

I realize I am all over the map in this post, but really just trying to process the FOG from the text.

I should add that “what she misses” is the attention she normally gets by having things done for her by us.  She can’t send us her lists or make demands if we aren’t there.

The distance makes us less accessible- even to send her silly meaningless textx to.  

These are the things she misses.  She misses the control and attention.  

And to her those things are normal, so they are why she misses her family.  

Also she misses the security of having us there in case she falls again or has another stroke.  She is afraid.  

Those are truly the only reasons she misses us.  It’s all about her.  

But I can never have that honest conversation with her because the attacks would be relentless and there is zero chance it would be worth the risk, because she would be hurt, become emotional, and go into irrational rage.

My best defense is boundaries, while I continue to be subjected to FOG.   

Is there a way anyone can think of to stop the FOG short of NC?

She is afraid of being alone without family.

She says I miss you because it used to work for her.  

In my reply I did not say I missed her too.  She won’t like that.  

She’s using “obligation and guilt “ to have her emotional needs met because she has the old feeling of abandonment since we left town and she is physically without family presently.

Have I got this right?

I am so sorry Methuen- I know this gets to you. It does to me too. Ironically, my BPD mother seems to be ignoring me these days. Maybe the less drama doesn't suit her. She also "grooms" people to meet her needs. I think she ignores me when she's got someone to meet her needs. Recently, someone comes to "help" her and I also think this person provides companionship, and since this arrangement, BPD mother seems less interested in talking to me. I am glad for her that someone is meeting her needs.

Congratulations to your daughter and her partner on their next step with jobs. Please enjoy your time with them!

Waif is the hardest, isn't it? It's hard to see our parents physically suffer with ailments. I don't want my mother to feel badly. I know you don't want yours to feel badly either. I think we wish things could be different- for them, for us.

Yes, the "I miss you" reminds me of the "I want us to be a happy family again" email from Dad. It's that my role of enabling and appeasing BPD mother meets a need for her.

I hear you. It feels so familiar... I'm so glad you were able to find a path to a happy, healthy life for yourself and your immediate family. It's difficult dealing with the expectations (often unrealistic) put on us by unhealthy family members. When my hubby and I recently went to CA to  help organize his Dad's estate after his death my Mom tried to invite herself along several times. Distance seems so hard for them.  And, I think you're absolutely right - you can't have that honest conversation without unleashing a beast you don't want to have to deal with. But, you can be honest with yourself and with us and get that validation that you aren't doing anything wrong. Focusing on your immediate family is the right thing for you now. You are meeting your obligations. She is an adult. She can take care of herself, even if she'd rather other people manage life for her. Good luck with the move.

Glad you are having some well deserved time with your family and are truly out of range for your mother to be able to manipulate you into being there physically. The sad part of being an only child is that your mother is elderly, mentally and physically declining, should be in an assisted living and/or nursing home, and this does not really allow you to completely ignore her texts and cries for help. The challenges that we face when still in contact with disordered family members and the flying monkeys, are how to make it so no matter how badly they treat us, we recover more quickly each time we are subject to FOG. I have seen you make great progress in not allowing your mother's behaviors bother you as much. I am assuming that posting here and feeling understood is a way to move on quickly from the latest round of FOG from your mother. Hopefully you are now back to enjoying your vacation and your family. I admire how you have raised succesful happy children, and have a healthy marriage.

My mother would text me : "I miss my granddaughter." As I am the big bad wolf keeping her from her grandchildren, now that I have children...! I think it is actually easier this way for me to be no contact with a bit less guilt.

Methuen, I am so very happy for you, to hear that your daughter is coming back to live closer to you. I am sure you must be overjoyed with this news. Maybe being able to focus on your own happy and safe family will help you ease out of the FOG faster everytime your mother put you back in it.

I cannot imagine how intense and exhausting it is for you to care for your mother the way you do. I couldn't imagine doing it. I thought I could and would, but, as bad as it sounds, I am glad one of my brothers is a bit of a messed up enmeshed with our mother, because he will take her in and care for her, leaving me my freedom. I admire your strength and ability to keep your boundaries in place the way you do. I really do.

Sending you support, and am very happy for the news regarding your daughter  :wee: ... What your mother couldn't do : you did. You are a safe mother, one that can help with no strings attached. Something to feel peaceful about.

Thank you everyone for your supportive and helpful replies.  Just - thank you.

You give me too much credit for doing well, and finding a path through this.  I am not doing very well presently.

We arrived home last night after helping our daughter and partner move back to her hometown where we also live.

Mother is disregulating again. Her latest text:

Re my drops. Dr _____ said I'm ready to do my own drops. [a lie.] Home care said I'm ready. [Another lie]  It's you holding thiings,,now there coming just to sign the book". [The last part refers to home care documenting the visits in a home health care binder kept at her house.  She believes they are just coming to her house so she has to pay for a service she doesn't want or need i.e. they are coming to take her money].

I ignored this text.

A few hours later, she phoned.  I put it on speaker.  My H and D25 and SO were all in the room.

She viciously attacked me for being the cause of home care still coming to her house.  This is nonsense, because it is her opthalmologist in concert with her home health team who are supporting her to get the drops necessary to retain the vision she has left.  She claimed her opthalmologist said she had 20/20 vision. H calmly asked her in a confused tone why she still needs to wear glasses if she has 20/20 vision.  I left the room.  I suspect H grey rocked her.  D25 and SO were shocked at her tone and accusations with me.  Also ranting racist comments about one of her home health workers whom we have met, and who handled her so calmly and professionally, despite her abuse of him.  

She informed us over the phone that she took the key out of the lock box (she's not capable of this, so her favorite flying monkey who was at her house today must have done it for her) so home care can't come into her house tomorrow (Sunday).  

I'm curious what home care will do with that.

This was my first day home from our trip.  Complete and total chaos.  Again, I wish I could live far far away from her.  Right now an ocean away would be too close.  She's irrational, makes up false accusations, attacks, and messes with everyone's life and happiness.

I feel horrible to say it, but if she just went ahead and had a nervous breakdown, a psych assessment could be done, and that might precipitate some needed changes.

She's suffering so much with this disease, her declining health, her age related cognitive impairment, and not coping with living alone, that the only path to change that I can see is that some catastrophe happens that puts her back in hospital.  Then with medical staff around her, they might finally see what I see.  

Your mother never gives up on trying to inflict her misery on to you. I do think that some kind of breakdown is coming soon in which your mother will be in some kind of care outside her home. Glad you left the room and had your husband to take over the conversation.

I am so sorry for this situation for you. I agree, distance is probably the only reason I don't have the exact struggles you do.

I wonder if her home health care workers already see what you see, in part. I haven't spoken to my mother's home health care but a social worker who is involved in coordinating them has told me she's very difficult and manipulative with them, and she has seen my mother's behaviors. Most of them don't stay long with her. She is very demanding and critical. Some I think she has fired. I suspect a lot of them have quit. I did hear that the director of one of the agencies has come over and calls sometimes. I don't know why, but it's probably that employees have raised concerns.

I think it's due to distance that she has to rely on them. You and your H have helped so much, and I think it's a good thing. On one hand, I know my mother is difficult. On the other, I also have enough FOG that I feel badly for her and wish I could do something to help her- but it's a no win situation. I wonder if now that you and your H are doing less, she has to lean more on them, and they will see it.

The issue is the legal definition of incompetence and her right to autonomy. Being difficult and disordered is not illegal. The social worker also confirmed to me that nobody can intervene at the moment unless it's an emergency situation. Her situation is chaotic too, but she's the one directing it.

I think letting her argue with her medical team over her eye drops will reveal a lot. You - on the other hand- stay your course. Don't sign papers for something you know would not be in her best interest. If she were a toddler screaming for chocolate for dinner - you would not give her chocolate- because it's not in her best interest. If home health can't get into her home if she took the key out- well they will call authorities to assist. I actually doubt your mother will do that, as she doesn't want them to get involved. This could possibly be a threat.

I don't want my mother to feel badly either. I also wish she could be more agreeable with others- it would be better for her too.

I, too, fear that a serious medical situation will happen that results in your mother being hospitalized and not allowed to return to her home.

Do you think home health would call authorities for a wellness check if they can't get into the house?

When I had left the room during last night’s phone call, she told H she was getting up at 7 to be ready to see who  comes to the door. 

She may or may not do that as she can’t use an alarm clock.  Typically shes up all night and sleeps a lot during the day.

I’m worried it’s more likely they will call me to go do a check on her.  If they do that, what do I say?

Methuen,
It could be time to consult a lawyer. The question you might want to ask is how can you not legally be responsible for your mother's medical care at all, and how to get the proper authorities to do their job of assessing her appropriately and getting her into a nursing home/assisted living.
My heart hurts for you. I know what is like to be used as a punching bag by a family member.

If they do that, what do I say?

That's a tough one, because you do care about her welfare. I walk that line too. I care but don't want to be responsible for her choices. It helps that she doesn't share much with me so I don't really know most of them.

For me, I don't live close enough to be able to check on her quickly. They would need to contact someone else. She doesn't want to have people looking into her welfare further so I don't think she would do something like this. She came very close after not being compliant with her medication. Her doctor raised concern and the issue of assisted living was raised. She does not want assisted living and so, complies at least enough to not have this happen.

For you though, you are able to. This might also be why your mother is less compliant-  because there is an alternative to having people look into her welfare if they call you instead. On the other hand, you have just come back from a trip and may not wish to rock the boat further. It may be that these latest antics are her emotional response to your trip- to feel you have not abandoned her.

One question is- if they had to call you, could this still be reportable and so prompt a professional welfare check on her? Could you even call social services to initiate it. This way, you still feel you can check on her and also have others assess her.

BPD mother did something like this with me. I had just gotten home from visiting my parents. BPD mother called me saying Dad was in trouble and made it sound like he was taking a turn for the worst. I panicked - jumped back in the car to come back. But the issue was already taken care of. The home nurse had come and taken care of the situation. The nurse could handle his health care needs. (better than I can)

I realized that as long as I would jump in the car for an emergency, there'd be a lot of "emergencies". It's not that I didn't want to be there, I did, but I also had responsibilities at home too. So, I didn't do that. I know my father was disappointed in me. I didn't want him to feel that way. But what about my kids? They weren't little but still needed parents at home part of the time. Did my parents consider them? Or me?

Your mother's health care needs can be handled as best as possible by her home health care team. Your mother won't like it if you step away and let them do just that. I know that's hard to do. I do feel for you in this situation.

This is interesting but I admit to being confused .  Everybody (experts and lay people alike) point out that she is competent to make her own bad decisions, until her doctor deems otherwise. 

So with that in mind, I am confused about how I could be held responsible for her medical care. I’m not disagreeing, I just don’t see how I could be held responsible when her health care team has assessed her to not even meet the benchmarks for assisted living.  That in itself shows what a convincing liar she is.  And the assessor believed everything mom said at face value, and did not ask for any family input to get another perspective depite my having had many conversations with her in the past.

Having said that, I had a very brief conversation with her doctor yesterday, and he said he will get his nurse to call me to make an appointment to discuss mom before we bring her in for her next prolia shot, which is July 13.

I will only have 15 min on the phone.  Any tips on what to include?

Methuen, it sounds like things have really deteriorated. I am so glad you experienced so much joy with your daughters convocation and she and her partners move to be close to you. Your husband is so great with your mother.


You are being too hard on yourself. You continue to navigate a really horrible situation with incredible thoughtfulness and self awareness. The problem is the circumstances you are in, not how you are managing the situation.

I remember a similar rough patch, an extinction burst with my sister, that wouldn’t seem to end.  I was totally consumed. I told my therapist at the time, that the situation just wasn’t sustainable for me. One of the very simple things he told me, was this wasn’t going to be forever and that something would happen that would change the situation. When we are in the chaos it often feels like it will never end. 

Your being away triggered abandonment issues for your mother and she became more dysregulated. I have been disappointed with the your mothers healthcare team not addressing your mothers clear needs to be in an assisted living, as I do believe it is becoming increasingly obvious that is the case. By allowing them to see her repeated irrational behavior, it is my hope that they will eventually take action.  There isn’t much more you can do but allow them to see that as you are doing. I am glad your husband, daughter and her partner are there to support you. You have a lot of support here too. Just know we are all learning from and inspired by your clearheadedness, your ability to advocate for your mother while maintaining appropriate boundaries.


Zachira’s comment is a helpful reminder for all of us. Our personal progress in dealing with a BPD family member has to take into account that the FOG behaviors will continue when NC is not an option. We are human and are going to react, it is more about utilizing the tools we have learned here, having self awareness around our triggers, managing through them and as Zachira said, recovering more quickly.

You are amazing!

I am not a lawyer but I don't think you are responsible for her medical care unless you are acting as legal POA and signing on her behalf ( but don't take my word for it)

What I have heard of is family members being held responsible for paying for residential care if they sign on the person's behalf. Be careful about that.

If she were to go to assisted living, she'd have to cooperate with the staff. This seems unlikely. While I think medically, assisted living would be the best support for my mother, I know she would be uncooperative and hostile to deal with. I don't know all the details but there was an elderly person in our community who was so uncooperative they were dismissed from a local assisted living. This is one reason I haven't pushed the "legally incompetent" decision for my BPD mother as I think an assisted living would likely ask her to leave if they can't work with her. She may be difficult for home health to work with, but at least she has a place to stay in her home if they can't work with her. It's not ideal, but it's the lesser of the two possibilities.

Perhaps the conversation with the nurse might be about options for her to continue to stay in her home with care if her being too difficult in assisted living. You could ask about at one point she'd be considered legally incompetent. I still think people have the right to refuse medical care if they are legally competent but also it may be possible to get a court order to override that. It might be good to bring up these scenarios so you know what your options are.

It’s great you have an appointment with her doctor. I would share with doctor your continued concerns that she needs to be in an assisted living, and give the many examples. Explain why you believe the other assessments might have been flawed. Ask the doctor to document the examples and your concerns in her medical record.  You may want to ask  her doctor if they feel she is competent and what additional information or assessments would help them make an objective evaluation of her competency. I am hoping the doctor is beginning to see what you see, but help them in painting the picture and be direct in your requests. Lastly, ask for their recommendations on how to manage the situation. This forces them to offer a solution. If that solution fails, then perhaps, you are step closer to where you need to be.

I don’t think you are at any risk of liability. In fact, you have plenty of proof that you have been an advocate for your mothers well being. The only benefit I could see of engaging an elder law attorney is to provide objective advice on how to work with the medical team to demonstrate your mothers needs. It might be a consideration but I think the upcoming conversation with the doctor might be a more fruitful next step.

Good luck!

I don't know about your mother but the idea of assisted living was enough to keep my BPD mother moderately compliant with home health because she absolutely does not want to go to assisted living.

Maybe the idea to your mother - if she refuses to comply with home health- then the only option left is assisted living will motivate her to cooperate.

See what her doctor says and what her choices are. Home care is costly- but it's what my mother has chosen to do with her saving and assets. It's her decision.

As far as being at risk for liability, it really depends on the laws where you live and how the authorities interpret and enforce them. My cousin was horrified when her husband died in the ambulance after suddenly getting very ill at home and was told that his death would be investigated unless a certain doctor signed off on it. He was elderly, morbidily obese, had diabetes, and numerous well documented serious health conditions. I suggested you might see a qualified lawyer. My thinking behind consulting a lawyer includes the possiblity of the lawyer writing some letters to the health care providers for their negligence, including assessing your mother as capable of living on her own and no longer qualifying for assisted living. It can be quite effective to have a lawyer involved, though I would not file a law suit, just pay for her/his time and services. A lawyer might also tell you how to protect yourself from any accusations of elder abuse even though there is none. Because you have been directly overseeing your mother's care even though she is supposedly competent to make her own decisions and has given you no legal rights to manage her health care, you still might want to address this with a lawyer. A question you might ask is how to make it clear you have no authority over what she is doing, and could you if you choose to not be further involved in any of her care. It seems to be me that the situation with your mother has gotten way too out of hand, and perhaps there is a way to make some of these agencies that oversee the health care of senior citizens more directly responsible for overseeing that your mother gets the right kind of care and regular assessments to determine her fitness to make her own decisions. Too many people seem to be passing onto you decisions that you do not have the power to make or enforce.

Zachira makes a good point. Lately my mother has latched on to the term "elder abuse". Apparently someone made sure she was informed of that possibility so she feels she can use it to protect herself. Unfortunately though, from her perspective, anyone who upsets her is a perpetrator of elder abuse.

Upsetting her could mean anything such as having a boundary with her or accidentally picking up the wrong item for her at the store. Or saying something to her that she didn't like.

I am considering not visiting her alone due to this. I don't put it past her to make such an accusation if she were to get angry at me.

You could need to protect yourself from any accusations.

I thought of these two situations (Methuen and Not Wendy) yesterday afternoon. We have had a neighbor (B) across the street -- retired, successful executive -- whom we have not seen for the entire seven years we have owned this house. She once put a note in my mailbox asking who did my yardwork, and I replied with the info and my phone number. She had regular complaints about her next-door neighbor (P), who nonetheless kept an eye on her. Apparently, the woman had conflicts with her daughter and did not see her anymore.

Yesterday afternoon, my husband said there were two police cars at P's house, and he wondered if there had been a car theft -- we've had unlocked cars gone through a few times with guns stolen. A few hours later, he took the garbage can to the street and said there was an ambulance loading a covered body at B's house -- no siren when it arrived, no lights, no urgency.

B died alone in her house with only P to feel that something was amiss. It is sad, yet our group of neighbors knew she would not answer the phone or door, no matter what. I doubt anyone could have moved her to assisted living without a crowbar.

Wow, how sad for that woman.

I don't ever question when adult children aren't around. I think people assume they are neglectful people, but I don't do that.

There was an elderly woman in our community who people liked and visited frequently. Yet, I didn't meet her children who lived a distance away. I understood that she could be pleasant to us but treat them entirely differently.

I think there are probably adult children who don't care but I believe that most of them have been driven away and are sadly caring at a distance.

Fortunately, my mother accepts home care help- but has issues with them and often engages in drama with them too. Still, it's her choice.

Thank you everyone for your feedback and your stories.  It is all helpful, and plays a big role in keeping me going.  Like others, I echo the sadness in GaGrl's story.  There are undoubtedly many more layers to that story.

Late yesterday I had the appointment with my mom's family doctor.  Mommydoc, I used your advice as a template.  At the end of the conversation he mused about getting the geriatric team to assess her.  What a great idea!  I asked if she would have to give consent.  He said yes, to which I noted that mom was unlikely to cooperate with that.  He noted that would be documented.  It is still a step forward.

This morning I got a call from the home care supervisor.  Mom has removed the key from the lock box so they cannot enter her house.  But she waits at the door to see which person is coming, and then lets them in.  One lovely gentleman triggered her simply because he was male (we met him and he is a genuine carer), so the supervisor advised me he has been removed from the caregiver list.  We had a fairly lengthy conversation about mom's deterioration.  She is now dishevelled.  More paranoid.  Denying her Parkinson's.  Insisting she's getting the drops in her eyes completely by herself when the workers are still assisting her (by telling her where to put her hand).  Sometimes the drops run down the side of her nose but she still insists they went in.  Self-sabatoging.  How?  She wants to remain in her own home.  But by insisting she doesn't need help from home care to get the drops prescribed to manage her remaining vision, she is showing that she isn't making good decisions about her own health. The supervisor said there was a scheduled care meeting for tomorrow and he was going to bring up mom's situation to the team.  By the end of the conversation I was in tears, begging him to ensure mom never learns about my communication with home care.  He assured me they would take care of her and I should try to enjoy the weekend with my company (daughter's partner's mother is visiting).  He said he would call me Monday regarding mom.

I brought her presents this morning (from our recent trip).  I'm no mental health expert, but I know my mom and I would say she is in a serious downward spiral.  I was on my way to work, so it was a short visit, but really distressing to see her like this.  Dishevelled.  Waiting inside her door for home care (because she took the key out of the lock box).

Crazy making.

Methuen, I am glad you got to speak to your mother's doctor. Now, your concerns are documented and they can observe what you have told them about her behavior.

I do think it's about control. While my mother likes to have help, she also needs to have control and choose who she has to help her. It's interesting to see her carry on similar dynamics with them. I recall if I did something minor, that would be it for her. So if someone for instance asks a question the wrong way ( to her ) she probably won't have them back.

There's no way she would go to assisted living. I think your mother feels the same way. I think the lesser control in that situation would be unacceptable to them. I know it must be hard to see your mother in cognitive decline.

Methuen, what a challenging moment in your mothers journey. It is heartbreaking that she can’t see how much you care about her and how you advocate for her well being. Unfortunately, this downward spiral was predictable. You saw this coming before her home care team.  Something will need to change, and it is doubtful it will be your mother.  It is encouraging that both the doctor and home care supervisor are beginning to see and share your concerns. Let us know what the team recommends.

Aging and end of life are so hard. Your mothers BPD certainly makes this situation  harder. I recall how resistant my paternal grandmother was to leaving her home and going to assisted living. My father, her friends and neighbors all knew that living alone was no longer working but it took multiple injuries and hospitalizations before my father with recommendations from her medical team, made the decision for her. She fought it, and he agonized over it. I was very involved and recall my father saying to me, that he would never put me through what she was putting him through. But the situation stabilized and she had a few really great years in assisted living very close to my parents home. Fast forward only 10 years, and we were in the same situation. Like his mother, he wanted his independence until he died, but at a certain point, my mother, a home care giver, and my entire family couldn’t safely provide the level of care he needed. The doctor told us either 24/7 in home caregivers or assisted living were the only options.  My father chose assisted living in the end because he realized my mother needed respite and she also needed care. It was agonizing, and yet once they moved, things stabilized. When I reflect on what I want as I age, the truth is I don’t really want to be in assisted living either. But I have a much stronger feeling of not wanting to put my kids through what your mother is putting you through Methuen, what my PGM put my father through and what he put me through. This is all so difficult without BPD. I think what makes it even harder in your situation, is how effectively your mother was able to “cover” and play others. I am very hopeful that her spiral might, at least in time, activate the team to make stronger recommendations. Both you and your mother will benefit from a more stable caregiving situation. I am hopeful you are getting closer to that.

I am not sure whether this is available in your area, but some of my friends have utilized adult day care for elderly parents. It is kind of like a cross between an assisted living and preschool. They get dropped off in the morning, do activities through the day, get their medications and lunch there and then go home for dinner and spend the night in their own home. They provide a lot of cognitive stimulation and social support. It seems like your mom is very isolated and she might even improve with more structured social support. The assisted living my mother lives in, allows people to do “day care” for a limited time, to “try out” the place while waiting for a room to open up or before making a more permanent decision. It is likely just as expensive but could be a compromise that your mother might agree to as an intermediate step. It might not be an available option, but might be worth looking into.

Looking forward to your update. Hugs!  :hug:

Methuen, is there someone in your area who does home visits for hair and nails? My mom was very particular about her hair, and her personal hairdresser (retired) was wonderful -- came every Friday to wash and style Mom's hair. Mom's caregiver or I took her to nail appointments until her fall and hospitalization, but once she was home in home health care, her nail tech came to our house several times.

Your mom might accept that, as it would be "pampering."

I am wondering what the differences are between qualifying for assisted living versus a higher level of care such as a nursing home. My aunt who could not keep any of her hired caretakers and tried to force her children who were senior citizens themselves to be her round the clock caretakers, went to a nursing home. From my visit there at lunchtime, I observed my aunt to be the most able bodied person there, fully able to walk to where she needed to go, and the most mentally fit, able to carry on a normal conversation. I think she could have been in assisted living if she weren't so difficult. The nursing home told my cousins that their mother was the most difficult person in there. My question is: What is the appropriate level of care for an elderly person who needs assistance with their medical care and clearly does not have the maturity to be cooperative enough to be in assisted living?

Methuen
Keeping you in my thoughts and hope you get a situation soon that is better for both yours and your mother's wellbeing.

GaGirl- I love the idea of a hair and nails at home!

Zachira- it's level of care and how independent a person is with their own self care- dressing, bathing, using the bathroom, and how much supervision they need. Someone in assisted living is relatively independent but needs support such as meals, transportation.

One other big difference is finances. Both are expensive but if someone has few resources, Medicaid will only pay for nursing home care. One also doesn't have a lot of choice. Some nursing homes may designate a few beds for Medicaid. One has to go to the one where there's a bed available.

It may be that your aunt needed to rely on Medicaid assistance and in that case, the choice is a nursing home.

I agree with Mommydoc- I don't want to be in assisted living either but I see it as a logical choice if the need arises. The problem with staying in one's home  until some catastrophic situation happens is that, then, it's an emergency situation and one needs to find a bed in a nursing home available. If one chooses assisted living when they are relatively independent, and if they have the resources to cover the costs, they have more choices.

Notwendy,
My aunt's nursing home was paid for out of her funds. Those who are in the business of elder care are usually very aware of how problematic elderly people with personality disorders can be, though they may not know the terminology, though fully able to describe the disordered behaviors. I am sure that there are probably some unique ways for dealing with this type of person, and it would be helpful to know more about what are some of the ways institutions and health care workers deal with incapacitated elderly people with a personality disorder. It certainly is not one size fits all, despite the laws, rules, and protocols on paper. On a lighter note, there was an elderly woman who lived on a cruise ship, who every night at dinner would steal all the silverware. Every once in awhile, a crew member would go to her cabin, and retrieve the silverware when she was not there. I am not suggesting that we put Methuen's mother on a cruise ship. I am saying that there is a lot of out of the box thinking and unique solutions happening when dealing with an elderly person with a personality disorder who refuses to go to assisted living despite no longer being capable of living on their own or having the capacity to accept caretakers coming to their home. Hopefully Methuen will soon experience some relief as alternatives come available that get her mother a better level of care which fully take into consideration how impaired her mother is due to her BPD.

My mother sometimes talked about her future. For her, it was either commiting suicide or moving in with one of her friends and hiring a nanny for cooking, cleaning, etc. and splitting the cost with her friend to make it possible. Maybe even two friends... She basically wanted to have her own assisted living, with nannies she was paying herself, ensuring control.

All in all, it is not a bad idea, if maybe a bit hard to put in place.

My in-laws are currently going through all of it with their parents. The grandfather has been consistently showing signs of dementia. He left, last winter, to go somewhere, and got lost. His wife didn't know where he was. The police brought him back, found him confused, walking around, not knowing where he was. He fell repeatedly in the staircase and on the concrete pavement of the driveway, one of those falls resulting in a concussion. He had to spend days in the hospital and my in-laws were hopeful they would send him to a nursing home. But the grandmother wants nothing to do with it. They tried to convince her with many solutions, and she won't have any of it.

So he is back home now, alone with her. She still drives (she really shouldn't) and refuses to go anywhere else. Like you Methuen, she refuses to give their children power and so... Just a very bad situation to be in. They continue their life. In the end : it is her decision and there is just nothing they can do.

It is hard even with no PD, so mix in a PD and it is a hard ride to be sure...

I would think that before they accept a resident, they must do an assessment of their needs- mobility, self help skills. Some retirement- assisted livings won't accept someone with nursing home level needs. Zachira- someone must have done some kind of assessment on your aunt to place her.

I have looked at several places. For assisted living, often the resident has their own space- like a room or mini apartment. It's interesting as they don't have ovens or stoves in them, but I think they have a mini fridge for snacks. There's a cafeteria and also activities and transportation to events in the community. So these residents may need assistance with meals, or transportation, or someone to come by to make sure they are taking their medicine, or some minimal help, but otherwise- they are safe to leave on their own.

The nursing home level looks more like a hospital. Residents basically have a bed and maybe a small desk. Many are not mobile. They may not be able to use the bathroom by themselves. They need assistance with dressing, bathing and so on.

I would say that physically, my mother is assisted living level, but emotionally she needs more than that. Still, she likes to be social and do things. If not for her emotional issues, I think she would have enjoyed assisted living. I actually wanted that for my parents when my father was ill. He would have gotten the care he needed. She would have been able to socialize and do things she likes to do. It all made sense from the outside but her need to be in control would have made it a miserable experience for her and the staff.

I don't think they handle difficult behavior in assisted living. As I mentioned before, I know someone who was asked to leave. He wasn't out of control but he was argumentative and possibly upset the staff. BPD mother likely would have verbally abused the staff and they won't tolerate that.

Perhaps they are better at managing difficult behavior in nursing homes. They can't very well kick someone out as they would not be able to manage anywhere else and especially if there were medical needs. One thought though, if someone really got out of hand, would they give them some sort of medicine to calm them down? I think they could justify that as the person would be a danger to themselves if they don't cooperate.

Zachira, I have heard of elderly people staying on a cruise ship. I think the cost is about the same as a nice assisted living. However, they are relatively independent. I was on a cruise a while ago and it was easy to get meals in so many ways, even room service if they wanted.

During the cruise, I  had a minor infection and had to go get antibiotics from the ship health center. It was very nice. They have a doctor on board and a small infirmary and they keep common medicines there. If a guest had something major, they'd have to air lift them to a hospital. So for an elderly person, it could be adequate for most things they may need but the person would still need to be reasonably independent.

Notwendy,
Yes, an assessment was done on my aunt to qualify for the nursing home. She was mobile and fully able to carry on a conversation. It is my opinion that she went to a nursing home instead of an assisted living because of her personality issues. She went from having home health care 24 hours a day to the nursing home. I don't think she had really deteriorated much and could have stayed with having home health care if all the home health care workers hadn't quit because of how badly she treated them. At one point, my aunt called a taxi company to take her to get a massage in a town about an hour away when her daughter refused to take off work and drive several hours out of her way so her mother could get a massage with this massage therapist my aunt liked. The taxi company contacted the nursing home saying they did not feel comfortable picking up a nursing home resident without consulting the nursing home first. My question is: What kind of care does an elderly person need who is mobile and has a personality disorder that would make it impossible for the staff to have her/him in assisted living?

Good question. I think my mother fits into that category. Physically, she's at the level of assisted living. Emotionally, her needs exceed that. She'd need the level of attention of the nursing home. I guess they made the right call with your aunt from reports of home health care. If your aunt was getting 24 hour care, assisted living doesn't do that. That requires nursing home care.

My BPD mother has had several home health care workers. They don't last long. They either quit or she dismisses them. I think she's on the radar of many of the agencies in her area.

I think your question is valid. It's a concern of mine as well. While I think if my mother did not have a PD, she might actually enjoy the social aspect of assisted living. But she needs more attention than that level. The only other option then is nursing home but I don't think it would match her social and mobility skills, but she needs constant attention and she'd get that there. Mostly I want her to be able to stay at home where she wants to be as she would not be happy in that situation.

I was thinking the same thing. I felt the ick rising in my throat reading those words because it's exactly what my pwBPD does.

I notice you putting your mom on speakerphone -- my (non-BPD) stepdaughter (28) does the same thing with her (BPD) sister (28), but I only now understand why.

H used to do it too when SD25 was in what seemed to be a chronic dysregulation. He would say, "I have you on speaker phone while LnL and I make dinner." It clipped her BPD wings a bit, for reasons I don't fully understand. Does your mom know she's on speakerphone?

It also seems like a way to spread the strain so that others can help validate how challenging this is.

I'm so glad you aren't alone dealing with this, even if much of the burden falls on your shoulders, especially the emotional labor that goes with the physical involved in showing up.

About the path ahead for your mom. It made me think of my BPD grandmother's paranoia as she aged. She would call my uncle (who lived close to her) relentlessly about people stealing her good lettuce and replacing it with bad lettuce. She would call and complain about the mess people were making in her house when she was in the other room even though she lived alone. She accused neighbors of coming in and moving her stuff around.

And on and on.

She wanted my uncle to call the police, to do this and that. For his own sanity, he had to stop taking her calls. He checked in by phone daily and regularly visited but took no incoming calls from her.

During that time, she started calling the police with the same allegations. After a short period following up on her calls, police did a well check and told my uncle they were no longer responding, and that she needed to be admitted. This was in another country so I'm not sure how that pipeline worked for people like her -- I only mention this because my uncle dialing back his full support was what created an opportunity for her to be admitted.

He kept supporting her but it wasn't all on his shoulders after she was admitted, and even though it was still hard, he would often say what a relief it was to share the burden.  :(

Methuen,
I apologize for hijacking your thread. My intentions were to hopefully generate some discussion of alternate solutions for the elderly who are not physically and medically impaired enough for a nursing home yet might not be candidates either for assisted living because of their disordered personalities. Challenges like you are having with your mother with BPD, are far from rare and handled or not handled in innovative ways that can make life easier for everybody. There is a grea deal of shame around mental illness and personality disorders; it seems that family members are often left in terrible limbo looking for solutions to the unbearable task of getting the best care for an elderly parent who does not cooperate in any way until the dam breaks, and more drastic measures are taken. I hope you are feeling better, and your mother's current dysregulation has calmed down somewhat now that you are back in town, or at least whatever she  is doing is not bothering you that much. 

So adult daycare is available where I live.  The irony is that my mom used to take my dad to adult daycare.  He enjoyed the socialization and the activities, and the team providing the service was amazing.

My mom will never agree to this. She doesn't have a realistic picture of herself and doesn't see herself as "old". She is 100% wrapped up in optics.  Since none of her friends utilize this service (they have all aged well and are fit and able even though some of them are older than her), she would refuse it.  If any one of them went to adult day care or assisted living tomorrow, she would go to.  She has even said she would go to an assisted living facility 800 miles away where her niece 10 years younger (and fitter) is going.  She's just not willing to entertain the idea of the assisted living facility here - where everyone can visibly see she is going to assisted living first. Somehow it's a sign of weakness for her, and a loss of control. I suspect she would be demoralized and ashamed - so she just "fights" it, and refuses.  Plain and simple.  She has to be in control.  

The adult day care is a good idea though.  And I'm still glad you planted the seed of the idea for me.  Who knows how the future will unfold.

Another good idea!  Mom has been having someone come to her house to do her hair for about 2 years now.  But she's too cheap to have them come once a week.  She would never have her nails done.  But she does have someone also do her toenails occasionally (possibly the same person who does her hair).  I'm at the point where I don't ask too many questions.

Zachira: to your point about assisted living vs long term care, while my mom is probably still at the assisted living stage, that window will close one day, so if she continues on her current path, she may be at risk of one day going straight to long term care.  

As for thinking about our own futures as we age, I don't think anyone wants to go to assisted living.  Not now as we mull our futures, and especially not when the time presents itself in our face. H and I have talked about this too.  But, we are not "afraid" of it the way my mom is, because we have toured assisted living facilities.  There are all kinds of opportunities there, that are not present when one lives alone.  Tons of stimulation, programs, and social opportunities.  Where we live, assisted living is much like an "apartment", and includes a full kitchen (albeit small) including stove, fridge, and microwave.  Assisted living also comes with a 24/7 nurse on duty. H and I would rather do assisted living as a gift to our adult children, than put them through the "H _ _ _ _" mother is putting us through.  I hope that as I age, I have the grace to see it through, and that dementia does not take that grace away from me.

I love this! This is the best idea yet!  lol (except mom gets nausea on dry land never mind on a ship. She hates anything that floats).  Thank you Zachira.  This put a smile on my face.  :)  Your point about thinking out of the box is appreciated.

I can relate to her talk about suicide.  With my mom, she has always used the expression "I will commit suicide before I move into assisted living".  Even when no one is talking about assisted living, she will express this thought, just in case anyone wasn't already aware.

An icky thought entered my head that maybe mom's February assessment deemed her "not needing assisted living" because she would be so difficult.  I'm just going to kick that thought away, because hopefully no professional would do that.

Thanks LNL.  Thankfully my mom has not reached that stage of paranoia.  Although - last week a male nurse was sent to do her bedtime eye drops and safety check.  He was of African descent, and she freaked.  She became verbally agressive, thought he was going to rape her, and took the key out of her lockbox.  Then every morning, she waited by the door at the appointed hour, so that when home care came, she could let them in.  She probably knew that it could end badly for her if they came to do her drops, and couldn't enter the house.  After they reassigned him elsewhere (he was truly caring and wonderful) she put the key back in the lockbox.  She claims she did it herself.  If that is true (and she didn't get a flying monkey to do it for her), she is capable of doing more than she has shown us she can do.

Yes my mom knows she is on speakerphone. There have been a couple of exceptions: I recorded two of her rages, which she was unaware of.  Only H and my T have heard one of these rages.  For my sanity, the objective evidence is helpful, in the event I ever start to think "it's not that bad" or, "I should be a better daughter for my mom".  Just having it helps.  I haven't actually listened to it again.  It's also insurance should any health care professional suggest I am the problem because of what my mother tells them (if she's dysregulating).

Oh dearest Zachira! That is the sound of your dysfunctional family members making you feel like you have something to apologize for.  Please don't apologize!  Goodness knows, this site needs to be a safe place to express our ideas.  Your ideas/questions aren't hurting anyone - so please keep on expressing! :hug:  You have helped and supported people on here for years.  We can all learn from your ideas and questions. :hug:

I have little doubt my mother's recent behaviors were probably related to our being absent because of travel, and her being "alone" with her feelings of abandonment being triggered again.  We are leaving again this Thursday for 5 days, but I'm not telling her until tomorrow or Tuesday, so she doesn't have as much time for her anxiety to get out of control.  No point telling her weeks in advance.

I am observing a change.  It used to be that my moods and mental well-being paralleled my mother's.  If she was depressed, or angry or raging, or being emotionally needy beyond even her  normal, then my mental health also struggled.

Now that I am learning to live my life, and have boundaries, I am finding some pleasure and joy again, even amongst the troubles going on.  Even as my mom makes terrible decisions and languishes in her home, we are planning our next camping trip, our daughter has returned to her hometown and is living with us (+ her partner) until their rental is ready, and
I am working .6FTE.  It is a work in progress to move on with my life, and slowly release the FOG.  Some days it is two steps forwards followed by a step back.  Other days it is two steps backwards followed by steps forward. It is a work in progress. 

Thank you all for your continued support and consistent encouragement.  This forum provides stability (BPD family) where we have not had stable family.  The reliability of such good people here is amazing.

Zachira- you made an important point. Elder care resources are limited and so are mental health resources.

I have looked into them, first beginning with my parents. I think it's still expected for children to assist elderly parents, but it's getting harder to do this in our more mobile society. My mother in law cared for her mother in law and expected her children to do the same for her. By the time she needed care, most family members didn't live close enough to provide daily care except for one who was single and had a full time job. That child tried to help but got burned out trying to do it all. Getting MIL to accept help from anyone outside the family was tough, not because she was difficult but because her generation and culture considered it an insult. Her grown children were willing to pitch in financially to get her help- but getting her to accept it was the barrier.

Cost is a huge consideration. Medicare doesn't cover assisted living or nursing home care. Medicaid will assist with the cost only when all resources are depleted and only for nursing home care. In addition, beds are limited and so, if someone is needing Medicaid, their choices are limited to what is available. Medicaid allows for something like $36 a month only for personal expenses. Other than that, the person can not have additional income.

Assisted living where someone is relatively independent is costly and so one needs to be able to pay for it. There are different ways to do this. Some are monthly rent. Others are buy in in a continuing care arrangement. The person buys a unit and then has a monthly fee for food and other services. If that person needs nursing home care, the equity in the home is used to cover that, until Medicaid steps in as needed. A requirement to get into assisted living/independent living is that the person needs to be able to live safely at that level and they do an assessment first. So there is a "window" in the aging process where one can do this.

As Methuen says- it's not that anyone wants to go to assisted living but some of them are nice with amenities like a pool, or gym, and social events. It is preferable to go this route first because then, if someone needs nursing home care, they may actually have more choice than if they waited to when there is a urgent need. The entry point to assisted living is voluntary. For nursing home, it's often after the person is in a hospital for an illness and is not able to return to their home and so has to go where there is an available space.

Cost is a consideration. If a person owns their home- the way to cover the cost is to sell their current home and use the funds to either buy into a continuing care community or pay the monthly fee. This was what I first imagined for my parents and also my mother- that the value of her home in addition to her monthly income from Dad's savings, and social security would give her some nice choices. This is one reason why I was concerned when I found out she'd taken a home equity loan on her house because I wondered if it would limit her choices if she had the need for them.

Another option is care at home which is very expensive and not covered by Medicare or Medicaid. This is why nursing home care becomes a necessary decision and that itself is costly. My BPD mother has chosen this option- all others are unacceptable to her and actually assisted living would not accept her with her behaviors or they'd dismiss her shortly after once they experienced them. Ironically, had she agreed to go earlier, these behaviors would not have already been witnessed by the home health staff, so maybe it is for the better that they now know what her needs are. I think much of her financial resources have been spent on this, but it may be that this is the best possible arrangement for her.

MIL also stayed in her own home for as long as she could, but her own frugality and common sense eventually led to her agreeing to nursing home care when she needed it. At that point, her health actually improved. If left to herself, she would not bother to fix herself a meal, or be able to change her clothes but she got meals at the nursing home which was close enough to family and friends to visit. They could still come to take her to out for a meal if she was up to it.

I have friends who moved a parent into their own homes. It surely was an adjustment but also a blessing in ways. But there came a point where it wasn't safe for the parent. One friend would get calls from the neighbors who spotted the parent ( with dementia ) getting lost in the neighborhood as he was able to get out of the house when people were asleep or not looking. Or the risk of a fall was too high. Eventually they faced the difficult decision of nursing home care for safety reasons.

It seems that whether our disordered parent has home health care, goes to an assisted living or a nursing home, that it is crucial to find out if the agency taking care of our disordered parent has people employed who have the skills and support to do so. I think my aunt's home health care workers did not know how to work with somebody like her, so it made them more likely to quit. It seems that the nursing home staff did not do much better with her and really disliked the extra burden she was to the staff. In the case of my mother with BPD, she was very hostile to the home health care workers, until she finally got to a point where she was more appreciative of how wonderful they were to her. When my brother was dying of cancer and living in mom's house, one of the home health care nurses went all out to stop some of the ways my mother was abusing my brother, and he got some badly needed care to reduce his suffering because of her interventions.

A childhood friend of mine developed and opened a memory care home last year -- it is for women only and can handle a spectrum from milder dementia to full-scale Alzheimer's. I would think any nurses and attendants in such a situation can deal with high levels of anger and verbal, even physical, outbursts.

I don't know how common these types of homes are, but I have to wonder if someone with a PD who could be qualified with dementia would be best suited to one.

Zachira- You have pointed out another gap in elder care. The home health workers do not have professional training. They are there to help an elderly person stay in their home by doing things like preparing meals, assisting with personal care, and providing assistance with household tasks- laundry, errands, and transportation if they are hired to drive.

Here's the issue- someone with BPD may need the level of supervision that someone with memory issues might have, but they don't qualify for it and also may resist it. My BPD mother has helpers who have worked with dementia patients, but if they treat her like that, she gets angry because she doesn't need that, but she still needs that level of supervision emotionally.

It's similar to the line between legally competent and incompetent the issue of personal freedom. Maybe my mother needs have constant supervision, but one can not restrict personal freedom without reason. For now she's still in charge, even if she doesn't make the best decisions, unless it becomes harmful to her or someone else.

You have to consider that, if even trained therapist struggle with managing BPD, home health workers are not able to manage it.

The difference between someone with a PD and dementia is that, the person with the PD chooses their behaviors. The person with dementia who wanders out on the streets can be confined to a room when not supervised,  just like one would put a toddler in a playpen to keep them from hurting themselves if the parent needs to be fixing dinner. Neither should either stay confined like that for a long time without interaction. But you can not legally lock up a person with BPD who can walk around without harm to themselves.

I really don't know how they'd handle an uncooperative person in a nursing home. My mother did mention after an ER visit that the "mean nurse pushed her onto the bed". The story I imagined is that she probably tried to get off the bed without assistance and they didn't want her to fall, so gently pushed her back on the bed to stop her from falling. She didn't see it that way though.

There was a study done years ago on the accuracy of psychiatric diagnosis, comparing the professionals with training in mental health and the residents of a mental health facility. The residents were just as good as the professionals in describing all the aberrant behaviors, the only difference being the mental health professionals knew the names of the diagnosis.
From my experiences, many people who work with the elderly know how to deal with difficult elderly including those with personality disorders, and many of them have training in doing so.The key is find employees/employers who get it and can work with difficult seniors. Just because someone has training in working with mental health disorders doesn't mean he/she is effective in working with difficult seniors.
I have been touched many times by the kindness, generosity, and effectiveness of many people who worked with my disordered elderly family members, some who were trained mental health professionals and most who were not, though likely had some kind of orientation and support from their employer on how to work with the most difficult elderly clients.
For those of us who have a disordered elderly parent who would be a challenge for any agency/institution to provide care for, it seems that the focus needs to be on finding the right fit so that the family will not be abandonned to deal with the elderly parent on their own.

I don't really know the skills of the people who are helping my mother. She's not happy with many of them- but that's with most people. Many don't last long with her- I don't know if it's her behavior or she decides she doesn't like them. She seems to like the person she has now. This person is trained in elder care issues like dementia, ( and maybe PD's as well but they would not tell her that specifically) so maybe that is why they sent her.

I learned that I have to believe there are people out there who can help with the most difficult of challenges otherwise I will unlikely get the help I need.