Help - I'm so confused

[fullyfree]

I don't know what to do and really need help. My sister has BPD. She basically tortured me all our lives, and caused me so much pain and devastation in my life. She's got severe parkinson's and needs 24 hour one on one care, with other complex health issues. She's in her early 60's and 8 years older than me.

My dad died 4 years ago. Our mother and brother died within 5 days of each other a few months ago. I had a heart attack in between their deaths. My mother was severe BPD with brain injury and alzheimers. My brother died of leukemia and he and I were very close friends. Losing my brother has been so painful. Before his illness I had stopped talking with my sister altogether, but when he was diagnosed, we resumed some occasional conversation.

My sister has two sons, but they both want to control and manipulate her, and force her into medical treatment that she and I believe would hurt her more than help her. I've got chronic illness and I've learned a lot about health over the years, so she begged me to be her medical surrogate and to help her find answers for her health. Honestly her sons hate her, which is understandable, but they're both sober alcoholics with major behavioral problems, and they've said things about her that influenced my decision to help her. I didn't feel in good conscience that I could leave her to them.

So I've been her medical surrogate and it's torture. It's daily calls, and constant crisis. I've told her she must get some help from her son's as well, for non-health related issues. But she tests the boundaries constantly. It's impacting my health, causing high blood pressure, and I'm concerned about my heart. I also find myself depressed because of having to talk to her.

She tells me how sorry she is for the past (without every being willing to acknowledge what she's done) and texts me about how much she loves me. I just squirm inside, knowing that she has no idea what love is, and if I had something she wanted she'd just assume hurt me to get it. She's done that over and over.

Tonight there was something we had to discuss related to my mother's estate, and her true colors came out tonight (absolute greed and selfishness to the extreme with no remorse). It's the same old person there, despite what she's trying to present.

So before my mom and brother died I thought I'd never have to speak to her more than a few words at family gatherings. Now it's a daily thing. I believe in the bible and that we should bless those who despitefully use us. But I'm so torn. She's the last person alive in my immediate family. My husband didn't want me to help her, but he wouldn't stop me. Because she's unable to focus and follow through with doctors advice without help because of the impact of parkinson's on her brain, if I don't help her with her health, she probably has little to no chance for improvement.

There's so much more I could tell you, but this is getting long. I'd be grateful for any advice.

[sophiegirl]

dear fullyfree, what an emotional rollercoaster for you. I know this is much easier to say than do but unless you look after yourself first you will not be strong or well enough to look after anyone else. The most important person here is you. You sound a lovely caring person, but please take a few steps back and work out your needs first. I am my BPD mothers caregiver and I've been quite ill this year because i put her needs before my own. I cannot alter my mothers life or her BPD issues regardless of what I do for her. This board has really helped me realise that I deserve to take care of my own health and well being.  Please take care of yourself.

[fullyfree]

Thank you Sophigirl,

I know you're right, but I don't know how to do that.

What would be the best thing for my health is to not have to deal with her at all. I'm burnt out and it's impacted my health seriously. I need peace and time to restore my health. I also need time to examine my own health situation which is really complicated, and figure out what to do.

Anything to do with her is deeply stressful. Just conversing with her is stressful, as I'm sure many people on these boards know. And the more confusing thing is that once in a while, she's comforting. But deep down I know it's a manipulation to keep me on the hook. So that makes it even more stressful.

I don't know how to take care of myself, keep peace with her son's, help her, keep my distance, and have a clear conscience. Each of those things conflict with the other things.

I feel trapped. It's the same feeling I grew up with having a BPD mom and sister.

[GeekyGirl]

I'm so sorry for your losses, fullyfree.   You've been through a lot in the last year.

It sounds like you feel a tremendous amount of pressure by being your sister's health advocate. That must be difficult. Is there someone who can help and support you if you aren't getting any help from her sons?

It's ok to want (and need) a break from time to time. What would happen if you told your sister in an empathetic way that you need a little space to take care of yourself? Have you had a chance to check out SET (TOOLS: S.E.T. - Support, Empathy and Truth) yet? I've used that with my BPD mother more than a few times.

[fullyfree]

I'm so sorry for your losses, fullyfree.   You've been through a lot in the last year.

It sounds like you feel a tremendous amount of pressure by being your sister's health advocate. That must be difficult. Is there someone who can help and support you if you aren't getting any help from her sons?

It's ok to want (and need) a break from time to time. What would happen if you told your sister in an empathetic way that you need a little space to take care of yourself? Have you had a chance to check out SET (TOOLS: S.E.T. - Support, Empathy and Truth) yet? I've used that with my BPD mother more than a few times.

Hi GeekyGirl,

Thanks for your kind words. There really isn't anyone else. My brother was who everyone depended on. He was so capable and kind. It fell to me.

I'll check out the tools link. Thanks so much.

[GeekyGirl]

You know the line they use on airplanes while flight attendants give the pre-flight safety instructions: "Please make sure to secure your own oxygen mask before assisting others,"? That's what comes to mind here. While I completely understand why you feel obligated to help your sister, at the same time, you have to take care of yourself too. 

Do you have a therapist or member of the clergy available to you? Sometimes just having someone to talk to can help bring your stress level down.

[P.F.Change]

Oh, dear fullyfree. You have been through so much grief and stress lately! I can understand why you would be feeling worn out and stuck.

I don't know how to take care of myself, keep peace with her son's, help her, keep my distance, and have a clear conscience. Each of those things conflict with the other things.

I feel trapped.

When a parent has BPD, we tend to have a great sense of Obligation to take care of everyone else and Guilt if we try to put our own needs first. We Fear what punishment our family or God will inflict on us if we fail to perform perfectly. In your case, I am hearing a lot of this FOG. You seem to feel obligated to do a lot of things and guilty if you think about saying no. What if some of those things don't really have to be your responsibility? For instance, is it really your job to keep peace with your nephews? Certainly you don't have to initiate unnecessary conflicts, but you are not able to control them or your sister. What would it be like to let go of that job?

Keeping a clear conscience might require re-thinking some of the messages from your upbringing so that you understand it is not wrong to take care of yourself first. As GeekyGirl said about the oxygen mask, if we aren't looking after ourselves, we won't have anything left when we want to give to others.

if I don't help her with her health, she probably has little to no chance for improvement.

It sounds like you feel you are the only person capable of rescuing her. As I said, I think a lot of us with a parent who has BPD internalized a sense of responsibility for other people's lives and choices. Your sister's health outcome isn't really up to you; the part that is manageable and controllable is up to her. You do not have the power to change her willingness to comply with treatment. If she is actually unable to comply, maybe it is time to consider a live-in nursing situation or having a legal guardian assigned. There are a lot of people out there who can do the "health advocate" job. It really doesn't have to be you.

The only person you actually are responsible for is yourself. It is your job to take care of your heart and your stress levels and your chronic illness. There are lots of other people who can step in to look after your sister, but you are the only one who can take care of you. And you're definitely worth taking care of. What if you poured all of the energy you've been using on your sister into yourself instead? Can you give this to yourself?--->

I need peace and time to restore my health. I also need time to examine my own health situation which is really complicated, and figure out what to do.

Wishing you peace,

PF

[fullyfree]

All good advice - thank you! My sister does have 24 hour aid care and is in an assisted living situation.

Can anyone suggest a more in-depth place to read about the FOG principle and how to deal with it? Is there a good book or a website that focuses on it?

The reason I sound like I'm the only person who can rescue her is because at this moment I am, as far as I know. She has a really complex health situation, and no one else with the knowledge and will to help her.

She and I have a genetic defect that interferes with several of our systems, makes us very chemically sensitive, reactive to many drugs, and keeps our bodies from detoxifying properly. We've always had the symptoms of this disorder, but we just got the diagnosis in the last couple months. Her disorder is a different variation than mine, so I've had to invest much time to research it.

She's been unable to handle the normal treatments for her Parkinson's without severe unlivable side effects because of this disorder. Treating us is tricky and very complicated. I don't know anyone personally who's willing to learn how to deal with our issues, including her sons. Most doctors don't even know how to deal with her multiple issues.

I have a very in-depth understanding of her health issues and how to get around them. When I don't know the answers myself, I at least know what questions to ask the doctors, and/or I can spot someone who's doing things that shouldn't be done with her. I don't know anyone who can take her various conditions into account and deal with them. Even doctors. I'm working on finding her doctors who have enough knowledge to untangle the issues and treat her, and so far there's no one locally. We're trying a phone consult from a doc from another state next.

She doesn't have the ability to do it for herself. That's what makes it so hard.  

[sophiegirl]

Hi Fullyfree,

Reading more about FOG sounds like good advice, I've only recently realized how much of these things apply to me, I'm 47 and have been programmed since birth to believe the FOG issues. I am only just letting go of some of my perceived responsibilities and so far this hasn't killed my mother, my friends and relatives haven't abandoned me, healthcare workers haven't knocked on my door to tell me what a selfish daughter I am.

Can you make a list of everything you do for your sister and cross off the items that aren't necessary? Its just I've been quite ill this year trying to look after all my mothers needs as well as working and looking after my own family and it came as a bit of a wake up call, nobody stepped in to help me, after months of struggling and feeling really ill and weak I ended up going to the dr who diagnosed pneumonia and said I had to take bed rest. That was really my wake up call, I could have killed myself looking after someone elses needs, then nobody would be around to look after her or my own family.

I won't say its been an easy journey so far, I have battled with anger towards her, extreme guilt, she has tried to starve herself to get me back into the old routine, but I am feeling a lot more positive now and really working out what I want to do with my life again. I am even going to get away with my family for a few days without her.

I never thought I could let go of so much responsibility and baggage, but it can be done fullyfree, just gradually work through things slowly and methodically,. I found even having a plan of action helped to make me feel stronger and back in control.

Just to add (sorry to make this so long) you say you are the only person to deal with all this. Those were my words exactly as I am an only child and there is no-one else.

Good luck fullyfree and keep in touch with your progress.

[Sitara]

Here's the FOG workshop.  https://bpdfamily.com/content/emotional-blackmail-fear-obligation-and-guilt-fog

[fullyfree]

Hi Sophiegirl,

Thanks for the encouragement - I'm glad to hear you're making progress.

Sitara, thanks for the link. Also is there a book that you'd recommend? Thanks

[Sitara]

I don't personally know of any books.  Hopefully someone else can help with that.

[P.F.Change]

I am sorry to hear about your struggles with this genetic disorder and your sister's difficulty with it as well, fullyfree. That must be tiring on its own, even without the additional stresses of your life.

On the other hand, it is encouraging to hear that your sister already has full-time care. I think a phone consult with a physician who has more expertise and experience in dealing with her disorder sounds like a good idea. It would be great if her local primary care physician(s) who treat her on a regular basis were able to be in on that call as well. 

Your sister sounds fortunate to have someone in her life who is willing to ask questions and supervise her care. I also hear how worn out you sound; it must feel just exhausting to think there is no one else who can do that. I think sophiegirl had a good suggestion about making a list of things you can delegate to someone else. What do you think?

The reason I sound like I'm the only person who can rescue her is because at this moment I am, as far as I know. She has a really complex health situation, and no one else with the knowledge and will to help her.

While it may or may not be true that you are the only one who can give your sister this care, let's suppose that you are right. Here are a couple of questions:

1) What will happen to your sister if you stop doing some or all of the things you are currently doing for her?

2) What will happen to your sister if you do not stop and take care of your own health? Suppose you stress yourself out to the point of having another, perhaps more serious or even fatal, heart attack--what then?

Are there additional consequences to others besides your sister (such as yourself and your husband or children) for either of those questions? Sometimes it is helpful to me to make a list of pros and cons.

Also is there a book that you'd recommend? Thanks

I remember Susan Forward discussing FOG in her book Emotional Blackmail. It may be worth looking at. Here is a link to a review here on bpdfamily: Emotional Blackmail-Susan Forward, PhD.

PF

[fullyfree]

I think sophiegirl had a good suggestion about making a list of things you can delegate to someone else. What do you think?

I agree that it would be a good suggestion if there were anyone willing to take on anything extra for my sister. Her one son is doing her finances, handling the complicated legal issues with my mother's estate, about to have his first baby in weeks, and helping my sister-in-law with all her legal and financial issues. Her other son is completely unwilling to help in any way. There's really no one else.

While it may or may not be true that you are the only one who can give your sister this care, let's suppose that you are right. Here are a couple of questions:

1) What will happen to your sister if you stop doing some or all of the things you are currently doing for her?

2) What will happen to your sister if you do not stop and take care of your own health? Suppose you stress yourself out to the point of having another, perhaps more serious or even fatal, heart attack--what then?

Are there additional consequences to others besides your sister (such as yourself and your husband or children) for either of those questions? Sometimes it is helpful to me to make a list of pros and cons.

These are excellent questions. I don't have children, but my husband and my brother's children and wife would be impacted if something happened to me.

I had it out with my sister. I told her I would continue to help her with her medical issues, but that I realize that she's not a true friend to me. So while I would help her with the medical issues, I didn't want to talk to her socially on a daily basis. She cried, and accused me of being mean, and begged me to change my mind. She told me she never said what I quoted her as saying, and she got her aid to say she never heard her say that. This is so typical of her - she always denies what she's said and done. I had to go for counseling to combat the guilt of setting this boundary, but I'm doing better. My therapist told me if I didn't change what I was doing, my sister would literally kill me. I can't let that happen. I feel so sorry for my sister, but I can't die to keep her happy.

I was just so depressed talking to her daily. I realize I was lonely and trying to replace my brother who really loved me and was such a good friend. Really, next to my husband he was my best friend. But my sister was just taking my time, my strength and my peace, and is not capable of loving me in return.

So yesterday we didn't "chat", but I helped her make an appointment for a doctor. She was polite with a slight hint of anger, but she knows she needs me, so she's going with the program at the moment. It was a quick call, and we communicated through texts and emails for follow-up plans. I realize this is better for me. I feel like a weight is off, and I've decided to work on my own health as the priority.

I also realize I'll have to get through missing my brother, but I'll have to fill that hole in my heart and time with healthy things. I appreciate all of the support here. Thank you all.

[GeekyGirl]

It was a quick call, and we communicated through texts and emails for follow-up plans. I realize this is better for me. I feel like a weight is off, and I've decided to work on my own health as the priority.

I also realize I'll have to get through missing my brother, but I'll have to fill that hole in my heart and time with healthy things. I appreciate all of the support here. Thank you all. [/color][/color]

That's great, fullyfree. Your health and well-being is the most important thing here. What kinds of healthy things are you doing to help yourself heal? There's something else here that I think will help you: What does it mean to take care of yourself? . 

[P.F.Change]

I feel so sorry for my sister, but I can't die to keep her happy.

You are right--it is important to know where your limits are. It sounds like you have established a healthy boundary for yourself and are doing a job getting support with it. Your health is important.

This is so typical of her - she always denies what she's said and done.

For people with BPD, feelings=facts. So whatever they are feeling in the moment becomes the truth. Also, sometimes they truly do remember events differently than other people, sometimes completely blocking out that they happened at all, which can lead to conflicts like this. For me, it has helped just to accept that my mother is going to have different perceptions than I do about events and is *literally* not going to be able to remember times when she has behaved abusively. It doesn't help to argue about it because my truth is not her truth. So I just say things like, "I suppose we remember things differently."

There is nothing wrong with taking care of yourself, fullyfree. It does not mean you don't care about other people. The link GeekyGirl shared is one of my favorites. Let us know what you think about it.

PF

[fullyfree]

That's great, fullyfree. Your health and well-being is the most important thing here. What kinds of healthy things are you doing to help yourself heal? There's something else here that I think will help you: What does it mean to take care of yourself? .  [/quote]
GeekyGirl, Thanks for asking and for giving that link.

And PF Change that helps a lot. I don't remember ever reading that they actually remember things differently. That helps me forgive her, and I'll keep that in mind when I'm tempted to argue with her.

I think to take care of myself means taking time to research my own health issues, and to create and implement a health plan for myself. I was spending 90% of my research time looking into her issues because of how disabled she is, but I need to put myself first because my issues are life and death.

I want to start doing things I enjoy again, like painting.

I mainly just need to have hope and allow myself to get back into being positive and peaceful. Almost every conversation with her got me down and stressed, and I'd have trouble shaking that.

I just hope she doesn't try to call me and chat socially again. I suspect she might at some point, but I'm not sure how to deal with that. When you give her an inch she takes a mile. One friendly call can turn into every day, and then 10 times a day. This is frustrating even if I don't answer her calls. She gets mad and insistent, and leaves stressful messages, and texts. Plus my husband works at home the calls drive him up a wall. Any suggestions would be so appreciated.

[P.F.Change]

I just hope she doesn't try to call me and chat socially again. I suspect she might at some point, but I'm not sure how to deal with that. When you give her an inch she takes a mile. One friendly call can turn into every day, and then 10 times a day. This is frustrating even if I don't answer her calls. She gets mad and insistent, and leaves stressful messages, and texts. Plus my husband works at home the calls drive him up a wall. Any suggestions would be so appreciated.

I think it would be wise to come up with a plan. People with BPD lack skills for understanding and respecting other people's needs and boundaries, so it is highly likely that she will keep trying to get her needs met in the way that has always worked in the past.

What can you say if the conversation turns more social than business? What will you do when she calls or texts incessantly? There are lots of options--I would be interested in hearing if you have any other ideas first.

PF

[fullyfree]

I think it would be wise to come up with a plan. People with BPD lack skills for understanding and respecting other people's needs and boundaries, so it is highly likely that she will keep trying to get her needs met in the way that has always worked in the past.

What can you say if the conversation turns more social than business? What will you do when she calls or texts incessantly? There are lots of options--I would be interested in hearing if you have any other ideas first.

PF

This is where I get lost. I don't want to argue with her or hurt her, but I don't want to socialize with her either. I'd appreciate suggestions. Thanks!

[P.F.Change]

This is where I get lost. I don't want to argue with her or hurt her, but I don't want to socialize with her either. I'd appreciate suggestions. Thanks!

We have some great tools here that might provide you with some good examples of boundaries and ways to take care of them. I wasn't even aware what boundaries were when I first started trying to heal, so it was hard to articulate any of them. These workshops really helped. Would you like to look over these links and let us know if they give you any ideas about your own situation?

BOUNDARIES: Upholding our values and independence

BOUNDARIES: Case studies

I think it can definitely be challenging to learn a balance and care for our own boundaries without feeling guilty about hurting other people's feelings. I definitely struggled with this in the beginning. One thing I came to realize is that I can only control me--whether I am saying things as compassionately as possible; I cannot control others. They may still feel hurt or disappointed even if I have done my best, but I still need to take care of myself. The S.E.T. technique that GeekyGirl pointed you to is a great way to communicate a boundary in a compassionate way.  I encourage you to familiarize yourself with it and give it some practice. You can even try it out here in this thread if you want.    Here's an example if you want to try when you're ready:

Suppose your sister calls you up to ask a medical question, but then starts talking about Mr. Jones down the hall and his kidney stones and his dachshund and his son Joe who is there to visit every single day for three hours and he always brings chocolate and flowers. How might you use S.E.T. to get off the phone?

PF

[P.F.Change]

Suppose your sister calls you up to ask a medical question, but then starts talking about Mr. Jones down the hall and his kidney stones and his dachshund and his son Joe who is there to visit every single day for three hours and he always brings chocolate and flowers. How might you use S.E.T. to get off the phone?

PF

For the second time today, I have forgotten a whole paragraph in a reply.   I was going to edit this and provide an example for you, since you are new and asking for those. But I also think it's good to let you try on your own if you want to... .so just let us know which way you prefer to do it. Sorry if I left you with any frustration. 

PF

[sophiegirl]

 'When you give her an inch she takes a mile' I totally understand!

[fullyfree]

Suppose your sister calls you up to ask a medical question, but then starts talking about Mr. Jones down the hall and his kidney stones and his dachshund and his son Joe who is there to visit every single day for three hours and he always brings chocolate and flowers. How might you use S.E.T. to get off the phone?

PF

For the second time today, I have forgotten a whole paragraph in a reply.   I was going to edit this and provide an example for you, since you are new and asking for those. But I also think it's good to let you try on your own if you want to... .so just let us know which way you prefer to do it. Sorry if I left you with any frustration. 

PF

Hi PF,

I really would prefer an example. I'm really overwhelmed these days and could use all the help I can get. Thanks so much for your support!

[GeekyGirl]

Suppose your sister calls you up to ask a medical question, but then starts talking about Mr. Jones down the hall and his kidney stones and his dachshund and his son Joe who is there to visit every single day for three hours and he always brings chocolate and flowers. How might you use S.E.T. to get off the phone?

PF

Hi PF,

I really would prefer an example. I'm really overwhelmed these days and could use all the help I can get. Thanks so much for your support!

So using SET... .

S(upport): I'm glad you called to ask me about [insert medical condition].

E(mpathy): That sounds pretty important, and I want to make sure that we can figure out what to do about [medical condition].

T(ruth): As important as [medical condition] is to the both of us, I only have a few minutes to talk, and I want to make sure that we're both clear on what you need to do about [medical condition].

[fullyfree]

That's perfect if she's calling about her medical condition. What do I do as she calls to socialize?

last night we had a new addition to the family - her son and daughter-in-law had a baby. She called and I picked up the phone because I felt I ought to congratulate her and listen about the new baby. BUT, now based on her previous behavior, I'm pretty sure she'll be calling again to talk socially. It's her pattern to try and behave as if nothing happened.

I really need advice on how to deal with this. I had almost a full week without talking to her, and I've been doing better emotionally. I spent time working on my own health also. I don't want to deal with her socially, any more than necessary. 

I intend to not pick up the phone, but I imagine there will be a need to talk to her again directly about what I'm willing to do and not willing to do.

[fullyfree]

Anyone?

[P.F.Change]

That's perfect if she's calling about her medical condition. What do I do as she calls to socialize?

last night we had a new addition to the family - her son and daughter-in-law had a baby. She called and I picked up the phone because I felt I ought to congratulate her and listen about the new baby. BUT, now based on her previous behavior, I'm pretty sure she'll be calling again to talk socially. It's her pattern to try and behave as if nothing happened.

This is a formula you can tweak as needed. I think SET is useful in all kinds of situations. In this case, suppose your sister rings you up and the conversation takes a social turn. Something like this might help you:

Support: You are my sister and I care about you.

Empathy: I understand you want to talk to me about [subject].

Truth: Even so,  I am not able to discuss [subject] with you. I really can only talk about medical issues. Is there anything medical you need from me right now?

What do you think?

PF