>BPD sister very ill

[onlyfamilymember]

Hi all
I am the only surviving family member of a BPD sister. I spent much of my life as far away as possible from her, and now I have to come to the big city, far from my animal family, my work, my home, my life, to see her at the hospital, talk with doctors, talk to her friends, pay her bills.   My sister is a psychologist, so now that she is not working she has no income. I am supporting her, but for this I have to work, and my work is 200 km from here. Yet, people appear to expect me to be glued to her hospital bed crying and admiring her strenght. It appears that I have no right to a life that I spent my life building with love and passion.
Now she is very ill. Some fifteen years ago, a psychiatrist  diagnosed and treated her and during some years it was possible to have a family gathering without aggressions. But now, being very fragile, taking a huge amount of other medications, either BPD is not being treated or treatment is not being effective. So, we are back to the old sweet relationship. My sister in her hospital bed yelling at the top of her lungs that "we" (me, one friend very dear and loving to her, other friend who travelled 1,000 km to see her, the caretaker) are big bad guys and we are letting her die, this yelling trip being caused by her not wanting to drink water with some gel, as  ordered by one of the doctors.
She is very loved, so there is a whatsapp group of her friends to whom I have to post the news of her health. Besides, there are friends and distant relations who don't want to be part of the group, but they want the news of her health. There are old friends of our mother who want news of her health. There are neighbours, the caretaker of her house, the caretaker of the buiding where her house is, the manager of the parking lot where her car is. All these people seem to think that weekends and late at night, when I am most exhausted, or most in need to make things that I love and forget for some hours that I am also grieving for my sister's illness, I am also hoping for her to get well, but not only this, for I also have a life, these are the perfect hours to ask for news. Most of the times the messages are: "Hi. How is she?" Or simply: "Any news?" Not "Hi, how do you do, how is she?" I am not a person anymore. I am a answering machine.
And then I travel to the hospital. Yesterday the news were: she is in her last  days. So, two hundred kilometers in the car , work left behind undone, and I am there at the hospital. Thankfully, she is a little better, the "last days" were fake news. But she is tracheostomized, so she cannot yell at me, she grabs my hand and keeps it tightly grabbed all the morning, but she doesn't look at my face, although she smiles and  nods to all doctors who come in. It appears that I am guilty of living my life and working to support both of us. Maybe I am not aware of some magical form that allows me to earn the money needed to support us both while at the same time being here all the time, waiting for my sister to yell at me, and smiling at the people who exclaims how brave and strong she is.

I am grieving for her. I am hoping , without much hope,  that she will survive. I want her to be the terror that she always was, but living her life freely and again far away from me. In all my life I never spent so much time with my sister as I have been spending these months at the hospital. I always survived the abuse from her by keeping as far away as possible. Now it is not possible.
I am writing this cry for help after three messages from people wanting to know news. Two of them not even answered after I have told them the news. So  I put in my whatsapp profile the information that "I am not an artificial intelligence working to provide news, so please be well mannered when you ask."
I am not a masochist, so I have to find a way to survive this year.

[Notwendy]

My BPD mother recently passed away.  While I had some boundaries - one of them distance, I was also the main family member for her.

What stood out to me about your post is "people expect" you to react in a certain way. There expectations are based on their own experiences. Yours is different and so are the feelings. It's OK to feel whatever you feel and it may be a mix of emotions.

This is a stressful and difficult situation, even when BPD isn't involved. BPD affects the closest relationships the most. It's difficult for you because, you then may be the person your sister is projecting her feelings on, while you are also dealing with your own feelings.

So, even if I was doing things to help, the anger, the feeling that whatever I did wasn't enough was difficult. You are doing a lot for your sister, even if she isn't acknowledging it. However, you also need to take care of your self, your job, and your other commitments. Your sister may not recognize this, and may act like you are the in the wrong, but you need to hold on to this- you need your work, your sleep, your rest.

Who is calling the "alarms" - is it her doctors or is it your sister? If it's your sister, it may help to speak to your sister's care providers to get a sense of what is going on to assess the urgency if you are called.

 In all my life I never spent so much time with my sister as I have been spending these months at the hospital. I always survived the abuse from her by keeping as far away as possible. Now it is not possible.

This is the situation- you are the main person to care for someone who was abusive to you. While you do care about her and want to do the best you can for her, being around her frequently is also a challenge. You need emotional support too. I consulted a therapist for that. You will need to have some boundaries- others might not like that but you can protect your own emotional well being.

I recall the phone calls from extended family too, people who want you to explain things to them, but you also need times where you aren't available. It is OK to silence your phone to these people at times- letting the numbers from the hospital come through if there's a need.

I don't know what supports are available to your sister and to you. Hospitals in the US have social workers that you can speak to, perhaps you have them where you are too. Perhaps they can arrange to allow other people to visit your sister (some hospitals restrict visitors to critically ill patients) so someone in her friend group can also be of emotional support.

We want to feel we are being good sisters, daughters, but we may not get that feedback from the pwBPD. I hope you can believe you are doing good things for your sister, whether or not she acknowledges it. You also can take care of yourself during this time.

[onlyfamilymember]

Hi, Notwendy,

Thank you very much for your reply, and also, my condolences for your mother. This is the translation for the kind and respectful words here in Brazil, I hope this is how it sounds in English too.
Answering your questions: it is amazing, but the alarms come from the hospital doctors. This last one was a real mistake, the hospital psychiatrist misread the notes from the oncologist. But on the other two occasions doctors sent messages through the caregivers: "we need a family member to come here during the week. She is in high risk of death". Yesterday the hospital psychologist said to me: "filter the informations. The only medical team who knows everything about her is the onchologists". So we will do it.
I am going through therapy too. I wrote the cry for help  yesterday a few hours after therapy. Even a wonderful therapist cannot be with me all the times, specially in the night in this place I don't like to be.
The hospital has rules about number and time of visitors, but they are not enforced. My sister's friends are being a huge support for her. And we are helping each other to deal with the grief and fear. To some of them I managed to set limits: "We don't have to take care of ourselves just in order to be able care for her. We have to take care of ourselves for our own sake." They were shocked.
In your reply, you touched all the worst feelings of not being enough, not doing enough, never, no matter what I do. Thank you so much.

I recall the phone calls from extended family too, people who want you to explain things to them, but you also need times where you aren't available
Wonderful!!  I will set and respect my times of unavailability.
Again, thank you so much!

[Notwendy]

Thank you for the condolences. The words are just right in English.

It's good that your sister's doctors are in contact with you. It's hard to know the outcome sometimes. My BPD mother at times got ill where it wasn't certain how she would do, and then recover for a bit.

I am glad you have a therapist for support in this positon, of being the next of kin, the decision maker sometimes, for someone so close to you, who also was abusive to you. A lot of mixed feelings.

It is good that your sister has supportive friends. Still- take care of yourself- it's important. They don't see the whole situation like you do. This is a very difficult situation for you, and your sister.