Where would one find home health or assisted living who can deal with BPD?

[Notwendy]

BPD Mom is elderly and is able to help at home, but with the current situation ( Covid-19) and her age, her BPD behavior is getting worse. Prior to Covid, she's had an active social life but these opportunities are gone and also people fear exposing her to Covid-19 so they don't visit. We ( her children) call her regularly but also don't visit a lot due to distance, the shut downs as well as the fact that she's manipulative and verbally abusive when we do. That doesn't stop us from visiting but makes it difficult.

She has acted out her BPD behaviors with her home health workers before this but these behaviors have increased and even the staff has had enough of it. If she were in any kind of assisted living, it would be similar. People don't put up with this for long.

She can not be on her own, she has to have someone help her. Yet, she's still mentally sharp and is aware of what she is doing. This is just who she is. It's how she deals with stress- controls, manipulates and verbally and emotionally abuses the people closest to her.

She is severely BPD, yet can pull it together for any mental health evaluation, but emotionally needs constant attention, constant care, and anyone close enough to provide that becomes the person she acts out with. She's not going to change, we know that.

I realize that she created this situation and it is the consequence of her own choices and behavior, but I don't feel comfortable completely walking away from the situation either. Not because of guilt or obligation to her but due to out own sense of morality. She's difficult to deal with but we don't want to be inhumane.

I don't know what our options are if nobody can put up with her and honestly, we feel the same. We can't impact her behavior either and it's very difficult to deal with it.

My hope is that she can continue to find home health providers to help her. Now is not the time to be in any kind of nursing home and honestly, I think they would tell her they can't deal with her there too. I wonder if anyone can share their experiences and what to do. An aspect of this is self preservation too. It's very hard for me to spend extended time around her with the way she treats her family.

[GaGrl]

Is your mother getting home health services from an agency? Do they assign one particular caregiver to her? How often do they come in?

You might consult with the director of the agency. It might help if the agency rotates among several different caregivers rather than having one caregiver who then becomes a "target" for your mom's BPD behaviors.

[madeline7]

Hi Notwendy,
I have been down this road and it has been a rocky road for sure. My elderly uBPDm sounds alot like yours. We attempted to hire a private care manager, some are Nurses and some are Social Workers, they are expensive but can facilitate getting the appropriate help. The issue was that since my Mom has capacity, she would not "approve" a care manager since she understood the cost and said she didn't need help since she had her adult children to help. She was in Independent Living, but they are not a licensed community and offered no services except had a restaurant. When my Mom stopped going for meals, and had 1 episode of confusion, they asked the family to get a private caregiver or move her to an Assisted Living. Of course she refused, but then had a fall, she did not get hurt but it scared her. So she asked us to look into Assisted Living. We were lucky enough to find one that is different than the rest. They do have a SNF, and residents can literally stay there until the end, even if finances become drained. Most AL's are not set up like that. So she moved, immediately regretted it, acted out, but also realized that she could no longer support herself independently.  So she has mostly gone into waif mode with some acting out by way of silence. But we know she is getting her needs met. Then Covid hit, and she feels more isolated, yet refuses our visits.  I think the staff know her number, yet due to their structure of keeping residents, they are taking care of her. They even tried to "hire" the care manager, but of course that didn't work. So the family tip toes around her "difficult personality", and says she has always been a difficult and unhappy person (she does not have a diagnosis).  I honestly don't know what would have happened if she had not allowed herself to be in an AL, but I do know that if you can hire a private care manager, your Mom will get more support. It really needs to be a fee for service care manager that is hired by her of the family to really put the time in to get her the support she needs. Having an aging elderly BPD parent is tough, and navigating this in the time of Covid is a huge challenge. Take care.

[zachira]

Notwendy,
I am hoping that your mother is living in an area where there are a reasonable amount of choices in home health care and senior living facilities. In my experience, the key players involved in long term care of seniors tend to be aware that there are extremely difficult people to deal with in old age, and some will take these people and some will outright refuse these kind of people.
My aunt lived in a small town and eventually all the home health care workers from the one local agency quit because of how demanding she was. The home health care workers had very poor boundaries with my aunt, and felt that they had to go along with all her demands, were eventually exhausted and all quit except one worker who was completely overwhelmed. My aunt wanted her children to take of her, and they made it clear to her that they would not take the place of the home health care agency. At the facility my aunt lived in until she died, the staff told my cousins that their mother was the most difficult person they had. I visited there and I noticed that the staff had great boundaries in dealing with my aunt. She was not allowed to make herself the center of attention and take more of the staff's time than the other patients. I went to lunch at the facility and I observed that my aunt was the most mentally sharp and physically able person there. I concluded that the only reason she was in such an advanced care facility was because of her personality. It was sad that my aunt was in such a restricted environment, because she could have lived at home if it weren't for her difficult personality.
In the case of my mother, the home health care workers seemed to be aware of her problems with BPD, and being extremely kind to her seemed to work, even though she was mean to them at times. I got after my brother for allowing my mother to send the home health care workers early at her whim. This meant that they did not get paid for their full shift and most of the home health workers were older people who badly needed the money.
I am wondering if you are most worried that nobody will be willing to take care of your mother and you might end up having to be her primary caretaker which would be an absolute nightmare. I think the key will be to go out and do interviews at many places, and be up front about the challenges anybody would have with your mother whether it is in-home care or an assisted living facility. I recommend you have a long term plan for when your mother is no longer able to live at home, and have an assisted living facility that provides nursing home care as well. My favorite aunt was heartbroken when she had to leave her assisted living facility where she had lived for nearly 20 years, and go to a nursing home.
I hope you will be pleasantly surprised when you investigate options for your mother and find that there are indeed many key players who know how to deal with seniors with difficult personalities. It is really all about boundaries. Do they have the boundaries to deal with your mother or not?

[Naughty Nibbler]

Hey NotWendy:
My heart goes out to you.  It's a tough situation.  How old is your mom?

What's possible will relate to where she lives.  Perhaps check with some local home-care agencies to see if they have someone who has had experience with psychiatric care. Probably best to find a caregiver who has some training in strategies to use with mentally ill patients, or has a very tough exterior and can process verbal abuse.

Perhaps there needs to be a strategy put in place.  i.e. When mom becomes verbally abusive, the caregiver gives a warning.  If mom doesn't comply, the caregiver leaves and perhaps gets paid for the day. If there is an agency involved with caregivers, perhaps you can talk to a manager.

Sometimes offering a higher wage (hazard pay) might help retain a caregiver or help in finding a new one (s).  I know that many care facilities will refuse to house elderly patients that are violent, but I think facilities that deal with memory issues are more apt to have the staff to manage someone with BPD. Although if you mom is mentally competent, she won't want to be in a care facility that focuses on memory issues.

Unfortunately, you can't change your mother.  At some point, she may be faced with a choice.  Either she treats caregivers respectfully, or she ends up fending for herself.  Since she presents as mentally competent, there will come a day when she has to call authorities for help.  That could lead to an evaluation and perhaps local social services being involved and she could be forced to go to a care facility.

You are doing the best you can.  I admire you for your efforts.  The choices are currently hers.  Maybe if she has to endure a period of time without any help, she will be forced into a reality check.  

[Notwendy]

Mom is elderly- late 80's.

Thanks for all the replies. She does have a case manager, who she hired herself. I don't get too involved as if she thinks anyone is talking about her or even has a relationship with me, she paints them black. This is because she still doesn't want anyone to know about her issues although the case manager and the home health staff are fully on to her. However it was the case manager who alerted me to this situation having gotten worse.

This is part of the problem and it was similar when my father was ill. Anyone who has any boundaries with her is immediately painted black and dismissed by her. Since she would still pass a mental competency test ( as my Dad could as well)- they were still in control and could fire anyone they don't want around. The worst thing anyone can do is have boundaries with my mother or let on that she might have some kind of issue. To be acceptable to her you have to think she is normal and be a  doormat, do her bidding and do not resist or question anything she demands you to do. And tolerate her emotional and verbal abuse.

For a while the staff tolerated her behavior but surely they had to have some boundaries with her. She has made unecessary demands on them, things she can do herself, but she seems to need to have people at her command.

I am wondering if you are most worried that nobody will be willing to take care of your mother and you might end up having to be her primary caretaker which would be an absolute nightmare.

You are right on about this and there is no way. It would be horrible. One problem is that I do have empathy, so it is hard to see her get herself in this situation. On her part, she has none, does not have any concern about the effect of her behavior on me or anyone else.

Mostly she's in Queen Witch Mode. But when she doesn't get her way or needs help she goes into the most pitiful Waif act. It's all an act, and she can go back to Witch/Queen in a minute. But Waif is so hard to deal with. It's just awful to see her do this.

I hope we can find more help and resources to help her.

[madeline7]

Notwendy,
At my most desperate time, I spoke to my Mom's PCP, and although he was not able to speak openly due to confidentiality (this was after her fall and 1 episode of confusion), but I did drop the term emotional dysregulation, and he stopped me, asked me if I knew what that was and why I thought my Mom was dysregulated. So wr danced around that, but he did say if she didn't move, and refused to have a neuro psych evaluation, we just may have to wait for "discovery". Meaning, she would somehow get hurt and go to the ER, at which point they could finally give her the help (and neuro psyche eval). Of course that didn't sit well with me because I too, am empathetic and didn't want to wait for her to fail before getting help. But since she has capacity, it is her choice, and she was choosing her path,. So very hard to see, but really, there is not much we can do. You are doing everything you can, and in the world of borderline, no matter how much you do it is never enough. Make sure to do lots of self care during these especially trying times.

[Turkish]

My mom ended up in a home, but by then she was in Conservatorship. They ended up finding the right medical cocktail to subdue her lashing out at patients and staff. Even though your mom is ten years older than mine was... to this day i question "handing her off" to the government.  Living with us was out even though I suggested an assistant. I even looked into Stephen's Ministers, a Christian organization. But my mom didn't trust many people (or the wrong people), even before she became unable to care for herself.  Punting it to APS in California helped so much.

My mom ended up not being safe alone in my home unsupervised while I had to work.  As my T at the time put it, "you're a home, not a hospital, which is what she needs."

[Methuen]

NotWendy, I really feel for you.  I went through a rough spell with my aging uBPD mom about a year ago, where I had to get home care for her because of her abuse of me.  Mom had a fall and fractured 4 bones in her sacrum and pelvis. I cared for her for about 5 weeks (felt like 5 years), and then I had to detach and I went through the necessary process to get home care involved (I went through mom's Dr for these services).  Mom qualified for all kinds of home services (and later even qualified for assisted living! which she promptly refused).  Once the home care services started arriving, mom promptly dismissed them all, and her remaining recovery was on her own (surprisingly she said she was "fine" without home care help after I told her I wasn't able to meet all her nursing needs).  (I mentioned only the "nursing" needs to give her as small a target as possible.)  After a period of NC, I gradually went back to LC, and when Covid hit, I did all her shopping for her. I set boundaries, and have contact with her now as I am able (usually 2X/wk).

After mom dismissed all the home care services, I had several meetings with her case manager, who listened to me (but showed she didn't understand BPD).  She did suggest I meet with an "elderly services consultant" (a service available through the community care and home care delivery system), which I did.  This person had expertise in mental health.  This person "got it" (whereas mom's case worker clearly had no experience with BPD and didn't "get it").  I mention all this as a suggestion to possibly ask for and advocate for "specialty" elderly care expertise.  I had to tell them "I can't do this for mom anymore" which was pretty evident because I was broken and bawling and blurting one story after another of mom's mistreatment.  In my experience, until family says this, the services might not be available.

Despite all this, I had a stroke of really good luck.  You mention that your mom was social prior to Covid.  Mine is social too.  Two of her good friends (God bless them) told mom they had started taking Mirtazepine (both of them!).  Because her friends were taking it and feeling better, mom decided she had to have it too (BPD right?).  So she went to her family Dr (the same one that I spoke to about getting home care for her) and requested a prescription, and he wrote it out for her.  If I would have suggested an antidepressant, I know I would have been screamed at that I was the crazy one, but because her friends told her how well it was working for them, she decided she wanted it.  Her anti-depressant has worked out well for both mom and I.  She is feeling soo much better.  When mom is better, I am better.  It doesn't touch the BPD, but it sure helped with her depression.  I'm not sure if you know any of your mom's care providers, or friends, but if a similar idea (to make her feel better) was presented by someone else , in a way that was acceptable to her, well it can bring temporary relief.  I do realize my relief is only temporary (until her next fall, or until she decides she doesn't need the antidepressant any more).  Mom's case worker and the elderly care consultant both told me to expect that it would take a full catastrophic event and hospitalization for mom to be assessed at that time, and that is probably how she would transition to assisted living.  Apparently that is common with some elderly people.  Since mom has mental capacity and her mind is relatively intact (according to an assessment), she gets to make her own decisions.

I could never have my mother live with me.  So I had to come to the place of accepting that since mom had the right to make her own decisions, so did I.  For me, that meant acknowledging that I was not the right person to be mom's full-time caretaker (she has always wanted to live with H and I).  Since she is considered "fit and able" to make her own decisions, I consider her "fit and able" to find ways to live independently, without becoming her personal slave and punching bag to dump her emotions on.  Surprisingly, after the ordeal of her fall and being abused by her while caring for her, and then having her cancel all the home care services which came to her, she switched from Waif back to Queen.  She proved capable of independently finding many creative ways to have her infinite needs met by others.  I support her in ways that work for me as well as for her.  H does plenty too.  The rest she has to figure out.  To her, she was smart and evaded the nasty assisted living threat.

Like your mom, my mom chooses to be her own health advocate.  Because home care got involved, I was painted black (so were they), and she does not want me involved with any of her Dr appts.  I have had to accept that is her choice, even though I know she can't express herself during appts, has trouble remembering what she wants to say (doesn't write it down), and can't communicate her thoughts.  She has had many mini strokes and can't find words.

The catastrophe will eventually come.  Until then, I have learned to live "in the moment".

My hope is that she can continue to find home health providers to help her.

I hope my story supports your hope that she can.  When the time comes that she can't, because a catastrophic event happens, well the hospital staff will be trained to see what is going on, and they will be the ones to tell her that she can no longer live independently.

Not sure if there is anything in my story that is helpful to you. I feel I can really relate to your current situation.  I feel like you are a bit further along than me, but I empathize with what you are going through.  It is really really really difficult.  Hang in there. Even when it is as bad as it is for you now, ebbs and flows still happen.  Take care of yourself. 

[Mata]

Hi Notwendy - A year ago, my BPD mother moved into an "independent living" apartment that is in an assisted living community.  They have a variety of care levels, and she is in the lowest.  But they also do dementia and Alzheimer's care. 

She' chose to move there because she was doing very poorly living on her own.  It's been a roller coaster of a year, to say the least.  She is physically doing better, but she still emotionally disregulates often, and in general is hard to deal with.

The facility has been great.  Nevertheless, she regularly paints the whole place black, and acts out.  Especially since Covid.  She cycles between getting super angry at the over the restrictions they have to have in place to keep the residents safe, and being a waif.  In the beginning I was really worried they would kick her out over her BPD.  But to their credit, the staff and management seem to take it in stride.  I think it's because they have the training to deal with Alzheimer's patients who can be really difficult.  Also, they don't have the emotional ties with her, that I have.  So I think it's easier for the caregivers to ignore her antics - whereas if I was caring for her, I'd be a wreck.  I no longer worry about her getting kicked out.

I also stay out of her drama, and stopped responding to all her complaints about the place.  I keep an ear out for any red flags in her complaining - because elder abuse is a real issue - but with one exception, none of her complaints are really about anything other than how she feels about things. 

Since Covid, she has pretty regularly talked about moving out.  I tell her it's her decision, but made it clear I would not be able to step in and provide her the type of assistance she's getting there.  It was a hard conversation.  But I know that I cannot be her caretaker.  So far, she has decided to stay there.  I think she may move back to her house (in another town) in the spring.  I told her she can set up home healthcare there.  If they all quit on her, she will have to move back into assisted living.  It's taken me several months to even feel a little bit okay with that reality. 

I know it's really hard to navigate an aging BPD parent.  to you.     

[Notwendy]

Thanks, everyone-
Several of you mentioned something interesting- letting things be and an eventual turn that gets her to higher medical care. This is also something her case manager has said to me too- as my mother still insists on being in total control and would pass a mental competency test- that we really don't have many options. Fortunately this person also understands BPD. Until recently, her health care team was not able to speak to me due to confidentiality but as some point she did sign consents. I don't think she remembers that she did though, so I don't speak to them much. If she thought we were talking about her she'd dismiss them all and I want her to get the help. So they don't contact me about her daily antics, but I have been suspecting my mother's behavior has gotten worse from speaking to her and they confirmed that.

Living with me is not an option and even my H says he'd refuse that idea as he's seen her behavior. We also saw this type of situation during my father's illness. Turkish, I recall when you brought your mother to your home and how it affected your children. I feel like I was in a similar situation with my parents, having to choose between trying to please them and being able to effectively be a parent. I still think you did the best you could with a difficult situation, and yet, I also understand the feeling of wondering if I could have done better. I think this is part of all of our dilemmas. We want to do right by our parents, but also maintain some sense of boundaries and stability. The way my parents behaved when I was trying to help them was overwhelming and I had to have boundaries there too.

When my father was ill, we also tried to assist, find assisted living or other types of help and it was similar. Home health workers were a revolving door- they'd paint them black. They were also emotionally and verbally abusive to me until I just couldn't take it. Then they were critical that I wasn't around enough for them. They just didn't make that connection that someone can only take so much of that.

The way my mother speaks about her helpers is eerily similar to the things my Dad would say. I don't know if it's her immitating him, or if what he said was just repeating what she felt at the time. She often mirrors other people's behaviors but also my father would do what she wanted and repeat her words sometimes as well. I recall at the time thinking my parents acted like one person, and my mother's will prevailed.

So yes, looking at resources is a form of both self preservation and wanting her to have help. I tried to help when my dad was ill and felt at the time and it was constant dysregulation and verbal abuse. I think one can tolerate an elderly person getting upset and momentarily verbally abusive, but with my mother, it's deliberate, she knows she's doing it.

I think everyone is correct that there is no way to intervene. She's in control and will maintain that no matter what. I plan to ask the case worker what options are there for her to stay where she is and what assisted living situations are there if she were to need them.

[Methuen]

She has acted out her BPD behaviors with her home health workers before this but these behaviors have increased and even the staff has had enough of it.

The elderly services consultant I spoke about earlier recognized that "training" is needed for home health workers to deal with difficult patients (to assist them to better be able to work with the patient, which also assists the loved ones).  She spoke to something she called "communication strategies to reduced demands", and she prepared a two page document for us with real examples for how to communicate with high-conflict and difficult elderly people.  She recognized that the same strategies that help families with their high conflict family member, also work for home health care workers.  H and I really connected with this document and found it helpful.  It kind of sounds like at least some of the home health care workers who worked with your mom, could use some of this kind of training (communicating with high conflict persons) as well.  My "guess" is that most elderly pwBPD struggle with the "demand avoidance" referred to in her document.  To quote her " People with demand avoidance can have full emotional meltdowns where they can be verbally abusive...demand avoidance is about control and finding ways to gain control and reduce demands. For family communicating...rewards and praise cause as much stress as consequences."   Then she provided us with 2 pages of examples of communication strategies to use and avoid with my mom.  It's about communication, just like so many of the strategies provided on this website, yet I found that the strategies she provided us, were over and above SET,  not JADEing, asking validating questions etc.  Really, if the home health care workers are struggling with your mom, they could perhaps benefit from the communication "training" our elderly services consultant spoke in favour of, to avoid the conflict between the worker and the patient, which creates  a revolving door.  That might not help you, unless you have access to a case manager (of your mom's) who is a listener, a problem solver, and who wants the best for her patient's and their families.  H and I instantly adopted everything on the two pages the elderly consultant gave us.  I have to say it was one of a multitude of things that we found supportive and helpful.  Unfortunately, mom had already "dismissed" all of her home supports, so I am unable to comment on their actual level of training.  She never even gave them a chance.  

[Notwendy]

I think the training is excellent and I don't think my mother's helpers are highly trained to deal with patients like her. They are basically there to help with daily tasks, like housework, laundry, meals, and to supervise her so she doesn't fall, things like that.

But she's mentally sharp and could do many things for herself, she just won't, in a similar way to when we were at home. She can do things, but she won't and then orders/manipulates people to do them for her. Then when they do, she criticises it and is verbally abusive. She treats them the way she treats her kids and my Dad. For me, my boundary has been to walk away and disengage when she does that, and so for her helpers, they eventually won't do the job or she dismisses them. In the case of her family, she does the same- rejection, stops speaking to us, paints us black.

I am going to ask the case worker about any training for the staff. I also like the idea of them rotating time with her so they don't have to deal with her all the time.