Seeking advice from caretakers of family with BPD

[Annie2313]

My mom had BPD and the older she got, the worse her illness got. She relied heavily on family (especially one of her sisters) and the welfare state to take care of herself and my siblings and I. Now my sister has BPD and is displaying a very similar path of age = worsening illness. I wouldn’t say I’m “starting to come to terms” with the fact that I may have to be her caretaker someday, but more that I’m realizing it may be a possibility. I’d love to hear advice from anyone who has stepped into the role of caretaker and what that looks like, boundaries that you’ve had to put into place, rules, etc.

[Notwendy]

I don't live close enough to my parents to be a regular caregiver, but when my non-BPD father got ill, I tried to help as much as I could. It was a stressful time for all of us, and my BPD mother's behavior was extremely abusive. Although I visited with the premise of "helping Dad"- he was in the hospital- and he was being cared for there. I realized my role wasn't about helping him- but to take care of BPD mother.

I had not been alone in their house with her for this long since I was a student. For the past several years, both parents were together during visits. As a kid, my parents were able to convince me that BPD mother was "normal" or that I was to blame for her being upset. As an adult, I knew better and what I saw was unmanageable.

I think your largest dilemma will be with yourself- the struggle between what you wish to do, what you feel you should do, and still maintain your own emotional well being in a situation that may be emotionally and verbally abusive. I think it is understandable that an elderly loved one might be angry, irritable, frustrated at times but this is not about being tolerant of a relationship that is difficult or inconvenient. None of us would neglect a family member in need because of that.

This situation is different. Mental Illness, verbal and emotional abuse, non cooperation, acting out, raging, irrational behavior that has even challenged trained and licensed caregivers. My BPD mother is abusive to them as well.

I am not involved as a caretaker for my BPD mother so I can't advise on specific situations about that. But my advice is to pay attention to your own emotional well being, time, and resources and know your limits. Also accept that your family member likely won't be happy with them, but might not be happy even if you didn't have limits. Expect to struggle with your own feelings of what you think you should be doing, and wish you could do and what you decide to do or not do.

[livednlearned]

If you haven't come across NEA-BPD's Family Connections programs, that might be a great way to tee up some caretaking skills. You're smart to get a head start!

Family Connections is for caretakers of pwBPD and is typically led by a volunteer who has a BPD family member.

By the time I found them I had been here for a while and found a lot of overlap in approach and resources although Family Connections is in-person and I believe there is an annual conference. Peer support is priceless.

My FC group represented a variety of family configurations. Parents of BPD teens and adult children, adult children caretaking BPD parents, partners of BPD spouses, step-parents with BPD adult children (like me). There was one adult sibling who had a dual-diagnosis BPD twin whose story was particularly heart-breaking.

To feel a sense of belonging, it didn't matter if the BPD person in question was diagnosed or not. Some were more severe than others but all were in the red zone of difficulty. You would be welcome even if your care-taking is off in the distance.

You can read about the efficacy of this support network here: https://bmcpsychiatry.biomedcentral.com/articles/10.1186/s12888-020-02708-8

There was a lot of grief and suffering amongst parents with BPD teens and adult children. Many were grandparents worried about their BPD kids and the safety and welfare of their grandchildren. Even so, there was a gallows humor that cuts through the loneliness many of us feel trying to get through regular everyday stuff when things are upside down.

[TelHill]

Hello Annie,

My elderly mother was diagnosed with bpd a few years ago, but has had it ever since I can remember. I stepped in as a pt caregiver to her after she and my non-bpd dad were recuperating at home from long hospitalizations.

It was a challenge which was too overwhelming.  She was constantly enraged. The verbal and emotional abuse was unbearable, even worse than when I was under 18 and living with them. 

I had no support. My father is a very passive man. My brother is passive aggressive.  Neither would help me or agree take her to an inpatient psychiatric hospital.  My father told me he was afraid she would assault staff and be held in one long term. It was the first time he ever acknowledged she was mentally ill.

I felt very low and became agoraphobic some days. She hit and pushed me one day.  I ended my caregiving.

Since it's a 24/7 job, I would suggest making certain you can maintain a social life, arrange for a few days off each week, and make sure you are fairly compensated for your work.  Also be prepared that you may be the target for her rage, especially if she is home bound and has a limited social life.

[So Stressed]

Annie, I have cared for my undiagnosed bpd Mother for several years. I didn't know that she had bpd when I started, but there had been some serious dramas in the family.  After just a few months of caring for her, I sought some professional counseling to help me deal with her because there were some outbursts that were shocking to me and also abusive.  I didn't know how to deal with these situations.  I just thought that she was suffering from some dementia at first, and was looking for support from other care givers. As a result of regular counseling, I learned that my mother probably has bpd. The behaviors were always there, but they have escalated as she's aged.

It has been a really trying ordeal for me most of the time. I can't do anything right. She rages. She has "episodes" that are psychotic-like.  She cries. She yells.  She lies. She steals from me.

I had some boundaries, but she didn't respect them and sometimes it was just easier to bend to her demands than to try to maintain the boundaries.

So, I encourage you to get some support and access this site regularly.  I only found this site very recently, and I can see that if I had known more, I could have responded better in the situation, but I just didn't know.  And,  it is so good to know that I am not alone and that I am not crazy.

I was interested to see the post above about Family Connections. I am going to find out more.

 

[Methuen]

. I wouldn’t say I’m “starting to come to terms” with the fact that I may have to be her caretaker someday, but more that I’m realizing it may be a possibility.

I am sorry.

I am an only child.  Also the only family as she is 87 and her siblings live 800 miles away, are older than her (90’s) and in care homes themselves.  My father died 18 years ago.  I am 61.

I did my best - went above and beyond, but it was never enough and the more time I spent helping her as her needs escalated, the worse her behaviors became.  She owned and controlled me through emotional abuse.  I had to come out of retirement and return to work to set up a boundary.  That brought a nuclear rage which unleashed words I can never forget.  Now my husband does her grocery shop and takes her to appointments.  I can no longer do it because it’s not safe for me.  I am afraid that one day she will turn her rage to him, but so far that has not happened. She can be charming and has cultivated friends to care take her.

I have in many ways taken care of her since I was 5.  She was also my matron of honour at my wedding and we took her along on family holidays.  I always tried to take care of her feelings.  In the end none of it was enough because I put up a boundary by not agreeing to move her in with us when she demanded it, and then I returned to work so I wasn’t available to her every day or whenever she wanted/needed it.

I feel like my situation is a test case which demonstrates there is no way caretaking an elderly bpd parent can end well.

I would suggest getting a good therapist, reading every resource you can get your hands on to educate yourself, and focus on what to do to manage your wellness around her. 

[Notwendy]

I am sorry.

I feel like my situation is a test case which demonstrates there is no way caretaking an elderly bpd parent can end well.

I would suggest getting a good therapist, reading every resource you can get your hands on to educate yourself, and focus on what to do to manage your wellness around her. 

I wasn't the caretaker for my father during the time he was ill and eventually passed away, but I did try to be more involved in helping him. What made this difficult was my BPD mother's behaviors, which made it very difficult to help. She's controlling and so tends to grab control at any attempts to help them, then makes them ineffective or is critical of them. I have not stepped in as her caretaker. She now engages in these dynamics with her caregivers and health care providers- and resists their attempts to help her. It's frustrating to make your best effort, have her refuse it or be critical of it. I feel sorry for her that she is in this situation, but trying to help her is often ineffective.

[So Stressed]

What made this difficult was my BPD mother's behaviors, which made it very difficult to help. She's controlling and so tends to grab control at any attempts to help them, then makes them ineffective or is critical of them. I have not stepped in as her caretaker. She now engages in these dynamics with her caregivers and health care providers- and resists their attempts to help her. It's frustrating to make your best effort, have her refuse it or be critical of it. I feel sorry for her that she is in this situation, but trying to help her is often ineffective.

Yes, this is the situation with my bpd mother.  Impossible to help...controlling, critical, raging, and angry.

It is very hard to deal with and I am grateful to have found this site and other literature on BPD, but if only I had known more before.  Maybe I could have avoided a lot of conflicts because I would have realized that she thinks differently, rationalizes her unacceptable behaviors, triangulates and causes trouble in family relationships, acts like an angel around others, and abuses me behind closed doors, and no one believes me, so I have no support.

I read that someone in another post said that they have developed agoraphobia.  Sometimes, I just come home, go in my bedroom, and shut all the doors and windows while I stay safe and hide. I am usually a social person, but sometimes she takes everything I have to give, and I have to hide and rejuvenate.

[Mommydoc]

Annie2313, I feel for you.  My sister has uBPD. Though your aunts helped care for your mother, you do not have to be your sisters caregiver.  I have been the caregiver for first my father and now my mother, and my sister has made it extremely difficult.   There is just no way I could care for her in the future. 

Your situation may be different.  My sister has a husband and a son.  I hope and pray they will take it on.  I will help them from a far, financially if need be, but I am just not willing to be involved at a greater level.

It is good you are thinking through this in preparation.  It will be important for you to consider what you are willing to do, and what you are not willing to do.  For example, would you allow her to move in with you.   What are you willing to give up in your life to support her?  To me, one of the most  important thing to remember in a family member relationship with BPD, is that is not reciprocal.  It means one directional giving.  It means accepting that what you get in return is anger, hostility, gaslighting and rage.   Before finding this site, many of us experienced very unbalanced relationships with family members, that drained us and got in the way of our other healthy relationships that can be bring joy.

The more you know, the better prepared you will be.  The more self aware you are, the better you will be at setting appropriate boundaries, so you can balance your life.  Let us know if you have more specific questions that we can support you in.  Sometimes just sharing what you are experiencing here, can be very cathartic and healing.