Advice Needed!

[LyrikalAristotle]

Hello,

It has been a while since I have last posted, but I could really use some advice from people experienced in handling BPD that give altered versions of reality when retelling stories to other people.

I have posted before about my mom with BPD, and that she is very disabled and needs constant care. In recent months, I have noticed that she is cognitively declining, and has moments where she starts becoming abnormally unreasonable than normal. She also gets confused very easily.

She's experienced some life changes recently, and its triggering BPD symptoms on a higher scale. The constant arguing, random devaluations, etc. However, she now has an audience. I was trying to give her insulin before her breakfast and she starts screaming, literally screaming, about how she did not want the oatmeal she asked for and refusing to eat anything else. Eventually this ended with her throwing a bottle of syrup at me. After being awake for weeks and running myself into the ground after she needed an emergency treatment and was admitted to a hospital, I snapped. I threw the bottle on the ground and I walked out from frustration.

I isolated myself, until she calmed down from her raging, but I suddenly found the fire department walking through my front door. She called the fire department, because I "abandoned" her and that she needed to take her insulin. Neglected to tell them she cannot take it unless she eats food. Fire Department sends the Crisis Management Team to my house. Before they talk to her, I warn them that she has BPD.

After they talked to her, the team refused to speak to me anymore. They told me they would get her some resources and left. I noticed that after a week or so, nobody had reached out to me, but they remained in contact with her. Got her a social worker, a therapist, and police resource officer. One night she began telling me what she told these people. She told them every negative thing she could think of about me and that she's being neglected. She went as far as telling them I tried to defraud my bank and that she is "holding my secrets".

These people think I am abusing her. They also think that I am terrorizing this "poor defenseless woman." I refuse to give her a working debit card because she spent every dime I had, and bankrupted me. She stopped spending finally, but it was so bad that I ended up donating my plasma to buy our food and pay the rent. So on top of everything else, they feel that I am financially abusive.

I was told that the crisis team is coming back to my house next week to "have a conversation" with me about my behaviors. She has told me that she told the officers and case workers that I am mentally ill.

I have been recording her for the past year and have her on tape playing with the police, my job, my school, and acquaintances. I need advice. I want to hand this information over before I get investigated for neglect, but I worry that they are so wrapped around their finger, that they will tell her about the evidence I gathered to protect myself.

I really need advice, after everything I have been through, I do not think I can handle multiple strangers standing in my house telling me that I am a horrible person, despite me experiencing "hell on earth" while trying to care for a sick woman.

[Notwendy]

Yikes !
Are you in the US? I ask because I have an elderly mother with BPD and consulted an Elder Law attorney for information about resources in general and to protect myself from these kinds of situations. However this kind of information (Medicare/Medicaid/ elder abuse laws) are specific to the US.

How old is your mother ? What resources does she have ? (Medicare / Social Security /Etc) ?

[CC43]

Hi Lyrikal,

I've been worried about you and wondered if you would post again.  Alas, your situation seems as difficult as ever.  I hope you are holding up.

I recently spent some time caring for my elderly father, whose health was in decline for several months before his demise.  Like your mom, he gradually lost his mental faculties.  He had good days and bad days (more like bad mornings, good mid-days and bad afternoons), but towards the end, the proportion of bad days steadily increased.  He became belligerent and argumentative, probably because he was feeling terrible and lost virtually all control over his life.  He'd throw food on the floor if we didn't bring him what he wanted, even though what he wanted was prohibited in his diet.  I bet that arguments about food are fairly common with the elderly (as well as toddlers), as they have few other ways to exert control over their lives.  Similarly, my dad would often refuse to take medications as prescribed.  Since he didn't have BPD, these protests over food and medications made it clear to me that his mind was going, and that at some point he had to be declared incompetent and cede the decision-making over to loved ones.

Anyway, during the phase of reduced mental capacity, we had a number of medical staff and emergency services come visit the home when he (and we) needed additional help.  Where I live, there's such a thing as a "pick up crew" which assists when people fall and need help back into bed (my dad was a big guy and had no strength left).  Typically, these medical and emergency staff are experienced in dealing with elderly patients such as your mom, even if she has BPD.  It's fairly typical for elderly people to lose their mind and make all sorts of complaints.  When these professionals worked with my dad, they tended to agree with him, mostly to placate him, but they quickly understood that he was not mentally all there.  They knew how to talk to him to convince him to do what he needed to do, and they perhaps had more "authority" than a family member would.

It sounds to me like you might need some additional resources to help with your mom.  You might consider asking for a mental a competency test, because your mom might not be capable of making decisions in her own best interest.  If you explain the insulin situation, I'm pretty sure a nurse would understand it--even I understand that insulin is taken right before mealtime, and I'm not a diabetic!

I hear the trepidation in your post, that you are afraid that you will be accused of abuse.  You sound very smart, so I guess that you have a basis for such a fear.  Yet when I listen to your story, what I hear is an elderly woman who is losing her mind, acting out, and refusing to take her medications as prescribed.  I'd say those are fairly typical behaviors that medical staff will understand.  I know that her BPD behaviors make everything worse, but I bet they've seen BPD too.  They've probably seen everything already.  This won't be the first time.

When I was with my dad, there was a time that getting him to the doctor's office was a challenge.  To get tests, he had to go to the doctor's office, which wasn't feasible for him physically.  But where he lives and with his insurance, it was possible to get some help to come to the home.  It took some calls, but it was possible.

I can only imagine how hard all this is for you, as you're alone, your mom is difficult, and you're working, too.  I wish you strength.  I'm hoping that Notwendy will chime in, as she's in a similar circumstance and has lots of good advice when it comes to dealing with a needy BPD parent.

[Notwendy]

Yes-several of us here have elderly mothers with BPD and I agree with CC43 that getting more help involved would be helpful. Accessing services is different according to countries so knowing which one you are in will help to connect with posters in similar ones. Emotionally - very similar no matter where- so reach out for any discussion on that aspect !

As CC43 said-even if a parent doesn’t have BPD there may be a time where more help is needed. BPD dynamics are a challenge.

[LyrikalAristotle]

Hi Lyrikal,

I've been worried about you and wondered if you would post again.  Alas, your situation seems as difficult as ever.  I hope you are holding up.

I recently spent some time caring for my elderly father, whose health was in decline for several months before his demise.  Like your mom, he gradually lost his mental faculties.  He had good days and bad days (more like bad mornings, good mid-days and bad afternoons), but towards the end, the proportion of bad days steadily increased.  He became belligerent and argumentative, probably because he was feeling terrible and lost virtually all control over his life.  He'd throw food on the floor if we didn't bring him what he wanted, even though what he wanted was prohibited in his diet.  I bet that arguments about food are fairly common with the elderly (as well as toddlers), as they have few other ways to exert control over their lives.  Similarly, my dad would often refuse to take medications as prescribed.  Since he didn't have BPD, these protests over food and medications made it clear to me that his mind was going, and that at some point he had to be declared incompetent and cede the decision-making over to loved ones.

Anyway, during the phase of reduced mental capacity, we had a number of medical staff and emergency services come visit the home when he (and we) needed additional help.  Where I live, there's such a thing as a "pick up crew" which assists when people fall and need help back into bed (my dad was a big guy and had no strength left).  Typically, these medical and emergency staff are experienced in dealing with elderly patients such as your mom, even if she has BPD.  It's fairly typical for elderly people to lose their mind and make all sorts of complaints.  When these professionals worked with my dad, they tended to agree with him, mostly to placate him, but they quickly understood that he was not mentally all there.  They knew how to talk to him to convince him to do what he needed to do, and they perhaps had more "authority" than a family member would.

It sounds to me like you might need some additional resources to help with your mom.  You might consider asking for a mental a competency test, because your mom might not be capable of making decisions in her own best interest.  If you explain the insulin situation, I'm pretty sure a nurse would understand it--even I understand that insulin is taken right before mealtime, and I'm not a diabetic!

I hear the trepidation in your post, that you are afraid that you will be accused of abuse.  You sound very smart, so I guess that you have a basis for such a fear.  Yet when I listen to your story, what I hear is an elderly woman who is losing her mind, acting out, and refusing to take her medications as prescribed.  I'd say those are fairly typical behaviors that medical staff will understand.  I know that her BPD behaviors make everything worse, but I bet they've seen BPD too.  They've probably seen everything already.  This won't be the first time.

When I was with my dad, there was a time that getting him to the doctor's office was a challenge.  To get tests, he had to go to the doctor's office, which wasn't feasible for him physically.  But where he lives and with his insurance, it was possible to get some help to come to the home.  It took some calls, but it was possible.

I can only imagine how hard all this is for you, as you're alone, your mom is difficult, and you're working, too.  I wish you strength.  I'm hoping that Notwendy will chime in, as she's in a similar circumstance and has lots of good advice when it comes to dealing with a needy BPD parent.

Yes, things are more difficult than ever, but my situation has new bright sides! I was able to finish school, and I have gotten control of my finances and begun repairing my credit . Hopefully this brings you some peace of mind regarding me!

I do agree; I need additional resources. But alas, in true BPD fashion, she fired the local crisis team because they realized she was the problem and did not feel they needed to come over to our house anymore and tell me I was such a terrible, abusive person .

[CC43]

Hi Lyrikal,

Many congratulations for completing your studies!  As you accomplished that despite considerable adversity, you will likely succeed at whatever you put your mind to. Your finances will likely also improve, now that you have control. I hope you can find some help that your mom can’t simply « fire. ». As you get some positive momentum going, maybe things will start to feel better for you, or at least manageable.  You could let go of that hopeless, fearful feeling that can be paralyzing.

[LyrikalAristotle]

Yikes !
Are you in the US? I ask because I have an elderly mother with BPD and consulted an Elder Law attorney for information about resources in general and to protect myself from these kinds of situations. However this kind of information (Medicare/Medicaid/ elder abuse laws) are specific to the US.

How old is your mother ? What resources does she have ? (Medicare / Social Security /Etc) ?

Luckily, they realized who was the problem here. I narrowly avoided a very sticky situation! However, I should prepare for the next time. I am in the US. Maybe an Elder Law attorney would be my best bet here. Thank you for this!

[Notwendy]

Congratulations on finishing school.

It was helpful to speak to an elder law attorney. Even if there wasn't much I could do about the situation at the time, it is helpful to know the rules for Medicare/Medicaid, how to plan for Medicaid if there are assets and more.

If your mother is financially limited, I would suggest getting her qualified for Medicaid if she isn't already. This is different from Medicare- which all seniors have after a certain age. If she needed to be in skilled nursing at some point- it's possible to get Medicaid coverage if qualified. Medicare does not cover long term nursing care or assisted living or private home health care.

The issue is- if your mother cooperates with any kind of plan or not. My BPD mother does not. As long as she is legally competent, there isn't much I can do about this.

It sounds as if your mother is having some mental decline and is likely to need supervision and skilled nursing at some point. If she has financial limitations, she may qualify for Medicaid assistance for that. Here is where I think an elder law attorney can help you with information.

For her to get into skilled nursing- you have to step out of the way in terms of helping. The usual path is after a hospitalization as you described. At some point she would need to be discharged and so will assess her needs, supports and finances at the time. If the only option is skilled nursing- that is the direction they will lean to.

I have a friend whose father went this route. He is a difficult and narcissistic person. He was hospitalized for something and at discharge- they determined where he would be cared for. He now has a Medicaid covered bed at a skilled nursing facility. Once covered, my friend can now step in to help as she is able and willing to. She could not be his caretaker at home or completely support him but she is able to help in terms of visiting, providing snacks, clothing as needed.

Even in families where the elderly person does not have a PD, there may be a point where they need additional help and supervision beyond what the family can provide. When my friend's elderly parent began wandering and would wander outside the house at all hours, not knowing where he was, she realized he needed a higher level of care to keep him safe.

In the situations where a person is not cooperative and is "legally competent"- I think  it's only when they can not longer manage that they are led to help. I think meeting with an elder law attorney to see what is needed in case of this situation would help you know what to do, if you need to obtain power of attorney and other situations.

[CC43]

Hi there,

This might be tangential to the conversation, but I've been thinking a bit about the child's role in caring for an ageing loved one, or for any loved one with significant needs.  It seems that FOG (fear, obligation and guilt) drives us to step in, step up and assume a caregiver role.  We might think, there's nobody else who wants to help, and there's nobody else who can do this like I can.  But if the loved one is really needy (as in the case of dementia, BPD or both), assuming the caregiver role could destroy us.  Their neediness (and nastiness) could drive us to exhaustion and despair, and ultimately to the loss of our sense of self.

Then I think, what if I didn't exist?  Well, I think it's likely that help would be found, possibly in the form of Medicaid, assisted living, nursing aides, social workers and/or other loved ones who assist part-time.  Maybe this combination of support would be superior to relying on just one adult child, who doesn't necessarily have the requisite medical and psychiatric skills.

Then I think, my hypothetical loved one--let's say she's my BPD mom--is basically making me choose between being a caregiver and being a daughter.  Let's say she refuses to leave her home, which is on the other side of the country.  She insists that I move in with her, because she doesn't want anyone else in her home.  That would entail quitting my job, leaving my husband for a time, moving in with her and caring for her full time, while subjecting myself to her abuse.  Becoming a live-in nurse-slave basically means sacrificing me and my life.  In so doing, I basically shed my identity and cease to be her daughter, because my life as I knew it was wiped out.  I conclude that I could choose to be her caregiver, or her daughter, but not both.  Anyone could be her caregiver, but only I could be her daughter.  Wouldn't she rather let me be her daughter (assuming she was thinking clearly)?  In that case, what I should do is focus on getting her the right sort of support.  In fact, trained aides are probably better placed to help her anyway.  I'm not saying I won't help--I'm just saying that I draw the line at becoming the full-time caregiver-slave that she demands, so that I can retain the role of daughter, which we should both want for me.

When I was growing up, I was the eldest daughter in a large family.  We had enough money for a good life, but my parents were very frugal.  They resisted getting outside helpers, like babysitters, landscapers, snow plowers, home cleaners, repairmen, etc., mainly because of the cost, but also because of the nuisance of finding helpers and "having strangers in the home or on the property."  My mom claimed she couldn't work very hard because she was pregnant (sometimes) or had migraines (often). Consequently, when I was growing up, I had many responsibilities, including babysitting, dressing/bathing/bedding the little ones, laundry, ironing, lawn mowing, painting, driving (once I got my license), food preparation, dishes, vacuuming, dusting, bathroom cleaning, making multiple beds, picking up, raking, weeding, shoveling, walking and feeding the dog, etc.  I was chronically exhausted, underweight and sleep-deprived.  I was trying to be a "good" daughter, and since I was good at chores and home maintenance, the more I did, the more I was asked to do.  It was so easy, convenient and cheap for my parents to ask me to do more and more!   Throughout high school, I was the last person to bed and the first one up in the morning--I would turn on and off the house alarms, too, because "nobody else remembers."  After turning off the alarms, I would awaken my parents in the morning, and they would ask me to let them snooze for a few more minutes.  (Note the role reversal?)  I'm not saying I was the only one in the house who did chores, but as the oldest, I was in high demand, and somehow I was assigned both "pink collar" AND "blue collar" tasks, large and small.  My mom would treat me like her constant helper-aide, and my dad did the exact same thing.  I don't think they realized I was basically working double-time, on top of school work.  My time with friends was constantly curtailed because I was needed at home.  Anyway, what happened once I went to college?  I thought, boy, they are going to miss me and all my help.  Wrong!  They started hiring landscapers, house cleaners, repairmen and babysitters, because the work was too much for them to tackle alone, and the younger kids had to step up more and start to tidy their own rooms by themselves.  I think nobody realized how much I was doing on a daily basis, and that I felt like a child-slave.  I resented them for that.  I guess the moral of the story is, people won't accept help from others if you step right in and fulfill all of their needs, and they might not even be aware of or consider your needs at all.  Since they themselves aren't doing the work, your work might be "invisible" to them anyway.  But there's a happy side to this story too--when I went to college, and my chores were reduced to laundry and keeping my dorm room tidy, I suddenly had oodles of time for studies, extracurriculars and social activities.  I attended a very competitive college, but found it EASY, given all my free time and the efficiency I had learned in high school to survive.  I had the time of my life.  Then I had a very demanding career, but everything seemed like a cakewalk, relatively speaking, after learning to juggle chores and time management from an early age.  And adult life is much, much more fun.  Now I think I have CHOICES, not only about how I spend my time, but about my life in general.  I choose to be a daughter, but not a caregiver-slave.

[Notwendy]

Hi there,

But if the loved one is really needy (as in the case of dementia, BPD or both), assuming the caregiver role could destroy us.  Their neediness (and nastiness) could drive us to exhaustion and despair, and ultimately to the loss of our sense of self.

Then I think, my hypothetical loved one--let's say she's my BPD mom--is basically making me choose between being a caregiver and being a daughter. 

That would entail quitting my job, leaving my husband for a time, moving in with her and caring for her full time, while subjecting myself to her abuse.  Becoming a live-in nurse-slave basically means sacrificing me and my life.  In so doing, I basically shed my identity and cease to be her daughter, because my life as I knew it was wiped out.  I conclude that I could choose to be her caregiver, or her daughter, but not both.  Anyone could be her caregiver, but only I could be her daughter.  Wouldn't she rather let me be her daughter (assuming she was thinking clearly)? 

I'm not saying I won't help--I'm just saying that I draw the line at becoming the full-time caregiver-slave that she demands, so that I can retain the role of daughter, which we should both want for me.

I choose to be a daughter, but not a caregiver-slave.

I don't think this is tangiential at all. I saw what my friends were doing for their aging parents and wanted to do the same thing (I see this as a continuation of wishing my mother was like their mothers when I was a child). The idea that perhaps I am being judged for not being more involved with helping my mother by people who don't know the situation- if they only knew how much I wanted the kind of relationship/involment I saw my friends have.

I started out doing just that when my father got ill and it was similar to the situation you just described. For me, it also included me being a mother to my children. They needed a mother- not an emotionally drained shell of a person.

I assumed, (hoped) I could still be my parents' daughter. I didn't expect their response. It seems that meeting my BPD mother's needs (or attempting to) is the relationship. By having boundaries ( which displeased her)- the relationship was dismissed. I maintain contact with my BPD mother. When I visit, the first thing she says to me is "I have things for you to do". Fortunately, my mother prefers to hire people to do things for her so she can be in control.

Although Dad gets a pass because he was sick and so probably was going along with my mother to avoid conflict, I never imagined my parents would react this way. For me, the parent- child bond is something to protect and cherish, not toss away when it's not useful. Even as difficult as my parents may have been, I still wanted that relationship, even if it needed to be with boundaries, or LC. Although my mother eventually changed her legal papers, making me POA, her contact with me is need based. She calls me when there is something she wants me to do. I also have responsibility for the emotional distance because I don't share personal information with her and went LC but these are due to the relationship being emotionally and verbally abusive.

My mother is in assisted living and at a distance from me. She wanted to move closer to me but I needed the boundary of distance. She is in a nice place and her care needs are being met.  I do stay involved, being in contact with her medical providers when necessary, seeing that her money is going to her care needs. I had looked at several assisted living situations, some seemed very nice. I don't think anyone wants to be in one but I think if a parent's needs exceeds their adult child's abilities- being in one gives both peace of mind. My mother's care needs are at this level. This may have left a door open for us to have a mother-daughter relationship but for this to be possible, there needs to be the capacity for one.

[Notwendy]

CC43: I am sorry your parents did that with you. They may or may not have had BPD but there needs to be a balance between teen responsibilties and their own lives and activities. Seems you were overfunctioning and feeling responsible (parentified) as a teen for whatever reason.

That is my leaning too- to over function, to feel overly responsible for my mother and also for other people. I had to work on that.

I feel sad for anyone connected to someone with BPD who has had their parent-child relationship severed for no apparent valid reason. Even those of us here who have had to have boundaries with a parent whose behavior is abusive struggle with the question of NC or LC. The sad stories of those who are parents to someone with BPD, or someone married to a BPD spouse- and their child cuts contact is just unimaginally cruel. Yet, it seemed that my relationship with my parents was conditional on me being compliant with my BPD mother.

I think what she'd want if she could is for her to move near me and have me be on call 24/7 for her needs. My mother's emotional needs are so much, she can't be concerned about anyone slse.

CC43- I think you do a lot for your step child. I also agree that you deserve to have boundaries and your own relationship with your husband.