How to jointly care for aging parents with BPD sister?

[Depression = 72% of members]

Hi friends,

Hoping someone can offer some advice on my situation. My parents are in their 90s and starting to decline. My sister has BPD (diagnosed), and we will both be their caregivers as they become more dependent. How am I going to manage that? My approach so far has been to move independently of her, working directly with my parents to drive them to appointments, etc.. But at some point the decisions and logistics are going to get bigger and we will have to work together on them. My mom has explicitly asked that I not cut my sister out of the decisions, even though my mom recognizes that my sister is “difficult.”

An occurrence a few years back puts me especially on edge. My mom was having knee replacement surgery and was adamant that she did not want to go to a nursing home/rehabilitation center and that she wanted to stay home to recuperate. So I arranged to move in with her for a month following the surgery to take care of her, along with visiting PT, OT, and other healthcare providers as recommended by her doctor. However, the night before the surgery, my sister decided that this was not an adequate plan and that the only option was for my mom to be taken to a nursing home. While that was a reasonable option, it was not what my mom wanted and not the plan that my parents and I had worked out in the weeks before the surgery. I think my sister (understandably) felt out of the loop and began to feel really threatened. So she lashed out by insisting that my mom go to the nursing home. As tensions began to rise, a hospital social worker got involved to help us navigate the waters and be sure that my mom was getting proper care. She agreed with my sister that my mom needed to go to a nursing home, which is what happened, and it was a nightmare. 

Even writing this I’m getting panicky remembering how I couldn’t protect my mom, and trying to understand what was wrong with a recuperation plan that her doctor had said was fine leading up to the surgery. I tried to explain to the social worker our family dynamics in private but her eyes just glazed over. I’m shaking a little bit remembering how a professional got fooled by my sister’s act and how quickly I was dismissed. I felt like maybe I was the one with BPD.   

While my parents recognize that my sister “can be difficult” they refuse to accept that it is more than that, despite her being diagnosed with BPD. They don’t see the abuse that she hurls at others, and refuse to recognize that she is the common denominator in the fact that the rest of the family has gone NC with her. As frustrating as their lack of recognition is, not to mention how much it hurts that they invalidate the pain that she causes, I have stopped trying to convince them. It’s a waste of breath, and so far I’ve been good at biting my tongue rather than trying to defend myself.

Any thoughts on how I can navigate this going forward?

[Ouch9999]

Hi friends,

Hoping someone can offer some advice on my situation. My parents are in their 90s and starting to decline. My sister has BPD (diagnosed), and we will both be their caregivers as they become more dependent. How am I going to manage that? My approach so far has been to move independently of her, working directly with my parents to drive them to appointments, etc.. But at some point the decisions and logistics are going to get bigger and we will have to work together on them. My mom has explicitly asked that I not cut my sister out of the decisions, even though my mom recognizes that my sister is “difficult.”

An occurrence a few years back puts me especially on edge. My mom was having knee replacement surgery and was adamant that she did not want to go to a nursing home/rehabilitation center and that she wanted to stay home to recuperate. So I arranged to move in with her for a month following the surgery to take care of her, along with visiting PT, OT, and other healthcare providers as recommended by her doctor. However, the night before the surgery, my sister decided that this was not an adequate plan and that the only option was for my mom to be taken to a nursing home. While that was a reasonable option, it was not what my mom wanted and not the plan that my parents and I had worked out in the weeks before the surgery. I think my sister (understandably) felt out of the loop and began to feel really threatened. So she lashed out by insisting that my mom go to the nursing home. As tensions began to rise, a hospital social worker got involved to help us navigate the waters and be sure that my mom was getting proper care. She agreed with my sister that my mom needed to go to a nursing home, which is what happened, and it was a nightmare. 

Even writing this I’m getting panicky remembering how I couldn’t protect my mom, and trying to understand what was wrong with a recuperation plan that her doctor had said was fine leading up to the surgery. I tried to explain to the social worker our family dynamics in private but her eyes just glazed over. I’m shaking a little bit remembering how a professional got fooled by my sister’s act and how quickly I was dismissed. I felt like maybe I was the one with BPD.   

While my parents recognize that my sister “can be difficult” they refuse to accept that it is more than that, despite her being diagnosed with BPD. They don’t see the abuse that she hurls at others, and refuse to recognize that she is the common denominator in the fact that the rest of the family has gone NC with her. As frustrating as their lack of recognition is, not to mention how much it hurts that they invalidate the pain that she causes, I have stopped trying to convince them. It’s a waste of breath, and so far I’ve been good at biting my tongue rather than trying to defend myself.

Any thoughts on how I can navigate this going forward?

[Methuen]

As tensions began to rise, a hospital social worker got involved to help us navigate the waters and be sure that my mom was getting proper care. She agreed with my sister that my mom needed to go to a nursing home, which is what happened, and it was a nightmare.

So despite the fact that you and your mom had an agreement and a plan that you would move in and care for her, and assist with appointments for PT and OT, a social worker got involved and put your mom in a nursing home?  Maybe I'm off base or things are just different where I live, but I don't think a social worker has the power to do that if your mom has capacity to make her own decisions.  Did your mom feel pressure from your sister, and secretly agree to this new arrangement?  Were there complications with the surgery, or was it a routine knee replacement?

Even writing this I’m getting panicky remembering how I couldn’t protect my mom, and trying to understand what was wrong with a recuperation plan that her doctor had said was fine leading up to the surgery. I tried to explain to the social worker our family dynamics in private but her eyes just glazed over.

So if your mom's doctor had approved this plan, there is no way I can see that a social worker could over rule a doctor.  Was there more to this story?  By any chance, did you or your mom try talking to her doctor about the social worker's interference?  I'm thinking that could have ended it... If the social worker's eyes "glazed over" and she did not listen to you, something is off.  Keep advocating.  Or, is it possible your mom changed her mind and secretly agreed to this new arrangement just to get your sister off her back and make that problem go away?

It just doesn't add up to me that a social worker could over rule a doctor, if the doctor agreed to you and your mom's plan.

Now that your parents are in their 90's, and starting to decline, I can see why you are stressed.  You can see the chaos that your sister stirs up, but maybe feel powerless to prevent it?  

Have your parent's appointed an enduring POA?  Have they already made an updated Will? As for their care, I would have a private conversation with them about their wishes, when the time feels right.  Possibly consider recording the conversation for future evidence if needed.
 Maybe also accompany them to doctor appointments if they want the support?  All you can do, is try to honour their wishes for care, to the best of your ability.  If your sister interferes, and your parents allow that interference, it gets more complicated.  Then if you have concerns for their safety (physical, emotional, economic) because of her, then you can share that with their doctor, or a case worker, or a social worker (hopefully a different one).

Meanwhile, always look after your own well-being.

[Ouch9999]

Hi Methuen,

Thank you so much for taking the time to reply so thoughtfully.

You're exactly right- my mom caved to my sister. My sister will just argue until everyone gets exhausted and gives in to her. The arrangement for me to move in with my mom was not formally approved by her surgeon or anything (he was more like "you're going to need help for about three weeks after the surgery" and was satisfied that I was the help, but I don't think it was documented in a chart or anything). When my sister saw that my parents and I disagreed with the idea of a nursing home, she went to a social worker (presented a skewed version of reality in which a nursing home was the only reliable option to get the social worker on her side), and then brought the social worker in to 'demonstrate' that her argument had legitimacy. At this point we were all exhausted, my mom was drugged on painkillers, and my parents gave in, as you say 'to get my sister off her back and make the problem go away.' (And at that point it didn't matter to the surgeon what help my mom was getting, as long as she was getting help.)

One strategy I've considered is to let them live with the consequences of their own decisions. If they're going to give in to her, then it's on them. But understandably my hesitation is that 1) I don't want to see them suffer, 2) at this point it may be an "end of life" situation so I don't want them to be miserable at that point (and it's not like they would be learning a lesson in how to deal with my sister); and 3) I will probably have to clean up the mess anyways.

And lastly, I am the appointed POA and they are updating their will in January (and have asked me to be at the lawyer's with them). I've suggested that we ask the lawyer to officially document their wishes to remain at home for as long as medically or financially reasonable, specifically to avoid the fiasco we endured after the knee surgery, and they liked that idea. I just know that when my sister starts arguing again, they will cave because they don't like to upset her. 

I'm thinking that my only option is to step back when they agree to do what she wants, and let the cards fall where they may. Ugh, this is not fun.

Thank you for the reminder to look after my own well-being, and I offer the same to you. It is all too easy to forget.