Caring for my Chronically Ill Spouse (who also has BPD)

[Fathcom]

I am just looking for someone to talk to who understands.

My wife has BPD and debilitating chronic health problems. We have two small kids. I am the sole income provider, and I care for her and the kids when I am not at work. I do all the housework, the finances, etc. Things are tight, and the stress is intense.

I am so so so lonely and exhausted. We have lost almost all support from the outside due to people becoming exhausted and/or her pushing them away. And, of course, sometimes she splits on me and tells me I don't care and I never cared. That really breaks me.

But the hardest thing is pretending everything is okay. I do it for my kids so they feel safe, I do it for her so she remains stable, I do it at work to keep our income stable, I do it for my family so they don't hate her, I even do it for my friends because the friends I've opened up to have all bailed under the weight of it all.

The places I have found online to talk about BPD have often been very discouraging. I do not want to leave my wife. I know what I signed up for. I said "for better or for worse," and I really, truly meant it. I still mean it.

I'm just looking for people who might help me on that road.

[PLEASE - NO RUN MESSAGES]

PLEASE - NO RUN MESSAGES This is a high level discussion board for solving ongoing, day-to-day relationship conflicts. Members may appear frustrated but they are here for constructive solutions to problems. This is not a place for relationship "stay" or "leave" discussions. Please read the specific guidelines for this group.

[Notwendy]

The places I have found online to talk about BPD have often been very discouraging. I do not want to leave my wife. I know what I signed up for. I said "for better or for worse," and I really, truly meant it. I still mean it.

I'm just looking for people who might help me on that road.

Nobody here tells people to leave or stay. This is a decision only you can make. What I will tell you is that- even if your wife didn't have BPD, being a carergiver to a spouse, parenting on your own, and supporting the family can lead to burnout. It's not that you aren't capable and strong. You are human.

They say on an airplane- put your oxygen mask on first. Because we all need our own supply of oxygen in order to be able to help someone else.

You say you are doing this for your kids and I believe you, but your kids also need you to be there for them phyisically and emotionally.

I know this as an adult child of a severely affected mother with BPD. Like you, my father "did it all" but he also was human. He did the best anyone could do with this situation but my BPD mother took a lot of his time, energy and attention.

My best advice to you is to get some help- however you can manage- or afford. Fortunately my BPD mother did accept household help. I know some people don't want it but this isn't a choice. It's a necessity for you. She was reluctant to get home help for my father when he eventually needed it in his elder years. I think this was because of the need to "pretend all is normal" and home health may have discovered it wasn't. But I believe some help, however, you can do it, is important so that you have some respite from being a caregiver. Even if your wife didn't have BPD that advice would be the same. Caregiver burn out exists.

It is OK for your children to be cared for sometimes by someone else if they are safe and reliable. We had other people take care of us when we were younger. Other people can be emotionally stable role models too. However you can work this out- with a relative, a paid sitter, day care, preschool, day camps, after school care,  whatever resources you can manage.

It's OK to have someone come in to clean the house if it's possible for you. Or to pick up some meals to go, or to send the laundry out instead of doing it all. Even a little bit of this help- what could be affordable- is a help.

What resources are available for your wife? Is she eligible for social security disability? Medicaid? Home health services? You can speak to her physician confidentially and if she won't let you, speak to yours. Yours will tell you the same thing. Your kids and your wife depend on you to take care of yourself so you can be at your best for you and for them.

I understand the "pretend all is normal" however, you also have to have someone to speak to openly for support. You would benefit from counseling. It is a confidential situation. Your medical provider can recommend someone for you.

[Fathcom]

Thank you Notwendy.

I have a very good counselor that I have seen for years. I am 100% for in-home help and childcare. We used to do this but we can no longer afford it. I did burn out. Very hard. About three years ago. I hit rock bottom. Like, cops-to-me-to-the-ER rock bottom. Since then, I have been preaching "put my mask on first" to myself, and I am extremely grateful to be in a very stable place as a result. We applied for disability and she was denied. We have leveraged financial help from everyone we can think of and of course that has also led to those lost relationships.

Honestly, I'm just looking for a friend here. For some understanding and some emotional support. I know there are lots more things I should be doing and could be do to make things better, to put my mask on and make sure I don't burn out. I'm not afraid of that hard work. I listen to my counselor and I do the homework. I read books and I do what they tell me to do.

But the oxygen I really need right now is not more advice, as much as I appreciate it. The oxygen I need is compassion and a listening ear.

[Notwendy]

Understood- You aren't alone - there are many posters here who are going through this too and you will find compassion and understanding.

[Fathcom]

Thank you Notwendy. I hope I wasn't rude in my last message. I truely appreciate your thoughtful response.

This is all just so painful. Sometimes doing anything to try and make it better, like signing up for this group, has the frusterating result of being MORE painful at first, even if I know it will be healing in the long run.

All that to say, all of this is very raw and I hope I didn't come off as ungrateful or grumpy.

I do worry a great deal for my boys in all this. It is encouraging to hear that you had a father who also tried to hold things together. I would love to hear more about that. Would you be willing to share some of your story?

I know that there is only so much I can do to mitigate the hurt that my boys will experience, but I want to do everything I can to help them through it and give them resources to deal well with it themselves. I would love to hear some of your wisdom on this, as a child of a BPD mother.

What did your father do well that you would encourage me to do? What could he have done differently that might have helped more?
Did he talk to you about what was going on with your mother? If so, did that help?

Any thoughts you have on any of that would be such a blessing.

Thank you again for taking the time.

[Notwendy]

Actually- I didn't see it as rude but familiar in a way. Your response was similar to some of my father's responses.  He had a lot on his plate of emotions and tasks to do. Sometimes that plate was too full to put anything more on it.

It's hard to summarize what he did well and what I wish he'd done better. There are no perfect parents, even when there isn't BPD involved. Both my parents are deceased now, in their elder years, so I did see their relationship over time. My impression of it changed also over this time as I gained understanding and experience. I don't feel criticism or blame at this point. It was complicated.

I don't know what contribution to parenting your wife is capable of. BPD is on a spectrum and in addition, there can be other conditions. Some pwBPD are high functioning. BPD mother did not have other physical conditions until her elder years, but in her daily functions- like tasks, she was low functioning and her emotional needs were high.

Dad carried the entire emotional and physical work of parenting and was the sole financial support. This was a huge task. We did have household help. We thought that was odd at the time as my mother didn't work outside the home but I understand now that she wasn't just not capable of parenting, it wasn't safe for her to do it. I am grateful that we were taken care of.

The other side of doing the "work" of parenting is that children bond to that parent. I did not have the typical child-parent bond with my mother but I did with my father. I did care about her, but it was a different relationship than the typical one. She had her own emotional issues to deal with.

It's difficult to be the one to do the emotional and parenting work of both parents but because of this, you are in the best position to influence the outcome of your children. They will do as well as you are able to- hence the advice to take care of yourself.

You've heard of Maslow's hierarchy of needs and the first one is material and physical. All other needs build on this. Dad supported us, this need was met well. This is a high value need. Next is safety, and I think this was accomplished (not perfectly- we were still exposed to BPD mother's behavior) but it was done as best as possible. Some if it by us spending time away from her- school, activities after school, we stayed with his family sometimes. As your kids get older, they will be able to do more outside the home too. It also wasn't just for us. It took the stress of BPD mother.

The next three needs are more complicated. BPD mother's emotional needs were a lot and so were the focus of the family. It was not a "normal" situation.

Of some of the things I question- one is pretending all is OK which went on in our home as well. It was an unspoken family rule to not speak to anyone about BPD mother's behavior and to pretend she was normal.  What went on in our home with a very emotionally disordered parent was not normal and it wasn't OK. 

When children grow up with family dysfunction, this is their only experience- so it is their normal. We think it's normal and OK because, we don't know what OK is. So it was normal and OK to us, up to a point. But as kids get older and spend time at friend's houses, at school, with other adults - they will notice that other situations are different, and begin to question. Dad did not say much about BPD mother to us, but BPD wasn't known then and perhaps he also didn't know. There's more access to information about BPD now. I also think a counselor is the best person to explain this to kids and they would benefit from counseling at some point.

Your parenting tasks will evolve as your kids get older, so for now, meeting their basic needs, and yours is high on the priority list.