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Author Topic: daughter with medical illness and BPD  (Read 461 times)
Woody59

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« on: January 09, 2021, 10:22:11 PM »

My daughter, in addition to BPD, has a serious chronic medical condition with frequent exacerbation. She has been hospitalized at least 10 times in the past year. Her condition can be painful and pain management has been a huge issue to the point where she now takes prescribed narcotics daily and more for "flares". I don't think it is necessarily fatal or life-ending but she is a very bright young woman, highly educated and for now has a job, but may not be able to maintain one.
While her medical situation breaks my heart, she is very attention seeking and texts me up to 20x/day including when I am trying to work or when I tell her that I am busy (like watching a movie). I feel like I can't get a day without interruption and frequent major distress cries. Most of the time, while she may be uncomfortable or very unhappy, it is not an emergency but I feel like I am constantly "on call". I also have an elderly father to care for; my mother died a few months ago and I'm a health care provider so I have people who need me professionally.
My daughter is overwhelming me. I don't know what is "Normal" and what is not. I don't know if it's my problem that I can't maintain my composure when she texts me with distress signals (because she is distressed) or if I need to tell her to stop which will lead to her feeling that I don't care. I don't answer much of the time immediately, particularly from work, but that doesn't stop her. She does not seem to burden my husband the same way(he is in healthcare too) --she wants me to know how she feels ; he rarely set limits with her so if I do, I am the bad one. It's an issue we have been working on, with very slow progress, with a professional therapist.
I have no idea what to expect from a 32 yo with illness--what amount of support is normal for them to want from their parents? How do you set limits when you know your daughter is suffering physically and emotionally that both show you care and that you need space sometimes?
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Sancho
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« Reply #1 on: January 10, 2021, 12:28:31 AM »

You are describing one of the most difficult aspects of relating to a BPD loved one. I can't remember what age it was when it started, but the phone would ring and she would be at the other end in an hysterical state. It ended up I found myself on high alert all the time for the phone to ring, anticipating what I would have to deal with.

It seems with BPD that the emotion is so intense and things have to be resolved immediately! Even now, when my BPD has an issue of some sort, if my first five words are not an immediate solution to her problem (ie perhaps I have asked a clarifying question) then she flies off the handle verbally and storms off.

Has your daughter had any CBT therapy at all? It may be helpful for her as she is intelligent and capable.

I think the first thing to do is to think things through from your end. For example - your daughter has a serious health issue, but has she had any serious emergencies with this illness - or is it an illness that requires planned treatment and review?

If there was any emergency, her workplace would surely contact you.

If these things are the case then while she is at work, you should be able to  reduce taking the calls without worrying too much.

What options do you have to reduce calls do you think?

When you change the way you interact with her, there will be an escalation of her behaviour that can really increase your own anxiety - but after a while the new pattern may work?

I hope it is possible for you to set a firm and realistic boundary in relation to these calls, cope with the initial reaction to this change and move through to a new position on this.

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Resiliant
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« Reply #2 on: January 10, 2021, 12:14:58 PM »

Hi Woody and welcome!

One thing you said:
Excerpt
texts me up to 20x/day including when I am trying to work or when I tell her that I am busy (like watching a movie).

When my son is dysregulated, he texts me incessantly.  Having said that, he can be a compulsive talker.   When a therapist addressed it with him once after he spent the whole therapy session talking for an hour without hardly taking a breath or giving anyone else a chance to speak his response was that "if I can't get everything out, if I can't say everything that I feel needs to be said then I don't feel safe".

He struggles SO much with this compulsiveness that he has actually told me that he will put his phone in the trunk of his car so that he can't text me when he is driving.  So he tries!  The first time he did it the bluetooth picked it up and he ended up calling me.   He was so frustrated with himself over that.  Desperate attempts to be heard even though I try to validate.

What I do is put my phone on "do not disturb" between the hours of 9pm and 7am, and I let my son know that.   I have also firmly told him that it is impossible for me to read 79 texts at once.  I can't read them as fast as he can voice-to-text them.  He also knows that I will not respond when I am working.   Often I only read the last 3-4 texts and I have had to let him know that is what happens.   I repeatedly let him know that I am not purposely ignoring him and that it is just impossible.

I am not suggesting that you do what I am going to say next, but I do allow him to vent.  I have not set a boundary with him that he can't send me multiple texts. Why? Because he needs to get this stuff out and it's way better than him calling me and trying to talk for hours.   I believe that if he wasn't able to get things off his chest and out he would be more susceptible to self harm and other dangerous behaviors etc.

I have let him know that it is excessive, and let him know that if he did this to someone else they would likely block him and he would likely lose the relationship. 

One thing that I have found to be amazing is new technology.   Sometimes when I look at my phone and see several texts I shudder.  Because I know it means that he is dysregulated.   The best thing I ever did was to go into my vehicle and let the radio read the texts to me.  WOW   It's amazing!    When I read his texts, I read his emotion and it is hard not to react to his emotion.   When the neutral voice reads his texts through the vehicle radio his words make so much more sense!    I encourage others to try this.

Back to your daughter, one more thing I wonder.  To me, physical pain and fear about the pain go together.  For me, if I can be calm and not be concerned about what the pain means for my future then it is much less painful.  I am not saying that her pain is in her head - please do not think that is what I am saying!  (I have gone through and gotten through some very difficult and painful issues that have rendered me now moderately disabled but I am still very active and do many outdoor sports according to my abilities).    So, I am curious if your daughter has anxiety around her physical illness?   Could there be some fear about that which is exacerbating her BPD?    Would a focus on dealing with those anxieties make a difference?  Are there success stories about her illness that you can share with her so she doesn't fear a future of doom and gloom?

Just my thoughts

hugs

R
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Woody59

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« Reply #3 on: January 10, 2021, 01:42:54 PM »

Thank you both. I think that I need to either turn off her texts or just not respond when I can't (or shouldn't because I'm otherwise occupied). Last night I felt like I couldn't get away for  2 hours. I think she is  crying for attention particularly since they are always directed to me and not to her father. However, I think my  I think my husband and I need to tell her together that she needs to give us space and privacy at times and also that she needs to back off of her doing the same to her sister who is also going crazy.
While her illness is not life threatening in and of itself, the treatment (steroids and immunosuppressive drugs) have serious consequences. I have some skepticism about her treatment but she has not wanted my involvement so my modus operandi now is to know as little as possible and to let her deal with her doctors independently.
It is so hard to tell someone who is suffering (emotionally and physically) that you love and care about them but cannot tolerate the need for constant attention. We are  going to need to turn off our phones sometimes but it's difficult when I have another daughter and a 92 yo father who might need me.
I appreciate your understanding and support. W
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Sancho
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« Reply #4 on: January 11, 2021, 11:30:52 PM »

Do you think it would help if you gave her a time that you would check in on her?
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PearlsBefore
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« Reply #5 on: January 12, 2021, 12:24:51 AM »

Two quick thoughts because I'm headed to bed - but firstly I smiled to see the reference to your husband not setting limits...but then you're the one she incessantly texts even though he'd "mind it" less seemingly. This is pretty classic BPD in the sense that she's trying to prove to herself that you're NOT abandoning her...by subconsciously giving you the desire to abandon her. You might find that saying "I'm going to try to always accept (x) because you're my daughter and family has no limits" she ironically leaves you in a little more peace.

Slightly conversely, you could also try reassuring her that you'll ALWAYS respond to her mood when she texts you...but you can really only check your phone at lunch or on your bathroom break, so she feels validated that you WILL respond...but she's not panicking that if she hasn't heard back from you within ten minutes it's because you're planning to ignore her because you hate her because everybody hates her because she's no good and the world is no good and everything is black, black, black...
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« Reply #6 on: January 12, 2021, 08:01:32 PM »

hi Woody59,
You have pretty succinctly described what life with a borderline is like, and I completely agree with Pearlsbefore, Sancho and Resiliant.

I don't have a lot to add (pretty consumed with what's going on in the world these days, and my BPD's seem less important at the immediate moment)...but, I will ask this

What are you going to do about your enmeshment with your daughter?

You alone hold all the answers and have the power, you know?  I don't think you need to ask us, if this behavior is "normal."

b


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Woody59

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« Reply #7 on: January 27, 2021, 07:07:48 PM »

@B
I know this is Not normal. I am not asking that.
As a parent and physician parent, I have had difficulty knowing when my daughter is really ill or attention seeking. At this point it seems she does have a very rare disease but when she has "flares" she can be extremely attention seeking and it's hard to set limits with someone in that state (also often hospitalized). I think I may always be the "bad" one and may have to live with that.
My husband and I  have different tolerances and limits. I don't think he is able to set limits but I am increasingly realizing that I need to set my own whether or not he goes along. It doesn't feel good to be the "bad one" but I have to take care of myself. In addition to my work, I have a 92 yo recently widowed father with mild cognitive impairment. Both of these take a lot of my time and energy too. It's very hard not to feel overwhelmed.
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Sancho
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« Reply #8 on: January 28, 2021, 02:18:57 AM »

Would a 'checklist' be any help? ie if you sat down with her and talked through a list of symptoms and put them in categories?

Then work out what she should do if  . . . . . . .

I'm not really explaining myself well, but to gently start helping her identify what is going on with her illness and knowing herself what to do?

Ummm I know! Sounds good but with someone with BPD it's not that easy!
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losttrust

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« Reply #9 on: February 03, 2021, 03:28:31 AM »

so sorry to hear of the mental and physical challenges your daughter is having and the impact its having on you and family.  like other parents of BPD, the roller coaster of emotions do wear me out.  as a single mom - tag I'm it and unfortunately most the verbal assaults directed my way.  I've grown thick skin over the years to the insults he once got a reaction.  Not that my feelings don't get hurt, they do.  And i do feel a bit hostage as how am i to move on in my life and burden someone else to date... not to mention the costs associated to sustaining a adult BPD even with "good" insurance.  But, I am learning to set boundaries  - tonight was "I wont engage in any further conversation with you until your calmer-"  "your clearly upset and i want to understand, if you calm down and give me a call once you can communicate without yelling, I'd be happy to listen" .  it has worked and thankfully tonight it did as well.  The issue i find is once triggered my son can go from zero to 100 mph in seconds giving me little chance to help defuse the situation.  I can't get a word in to validate, use any SET statements.  But, i did learn some skills tonight on this forum that I plan to try tomorrow.  I tend to want to fix things.  I use I too much.   tomorrow will be - "how do you plan to fix that (a trigger)  or what do you suggest would help fix the cycle that has lead to your frustration.  this is so very helpful.   thank you 

I too have 85 year old parents who rely on me for healthcare emergency situations so i also can't turn off the phone.  I have given my son consistent and regular fair warnings,  of my bed time.  And on bad nights that i suspect a late night call might occur, I text a reminder   " I am going to bed at x time, i have a early morning work day.  If you call or text me i will be asleep, have a good night love you.   A few missed texts and calls seemed to be all it took for those to stop. and he is quiet in the house after hours as well.  With hope he can find a good fit for DPT / CBT residential program to work on additional skills. 
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Woody59

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« Reply #10 on: February 12, 2021, 08:52:31 PM »

Thank you all.
I have decided to tell my daughter I think it's best for me not to be involved in her medical care or decisions at all as it is not helpful to either of us. Her father is having a much more difficult time and she is working hard at creating a terrible split between us. I think it is very sad but I may need to accept very little relationship with her for now.
Question is how to have a "parental unit". and if that is necessary. I don't think she is going to improve mentally of physically if she continues with this psychological  and medical drama and manipulation of her parents. Today was a very hard day. My husband and I are working with a therapist to try to figure out how to balance these relationships but with a 32 yo daughter, I resent feeling like I am competing for her attention.
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« Reply #11 on: February 13, 2021, 09:09:23 AM »

I'm so sorry that you and your family is going through all of this.  It sounds like your daughter wants you to fix everything.  I struggle with the 'fixing' desire from my step daughter. I imagine that you were her go-to person when she needed comfort and help when she was young and she's still looking to you for that kind of support now. She becomes overwhelmed with her physical issues and emotional challenges and seeks you out to 'fix' it for her. Her anxiety causes her to obsess about what she's feeling and calling/texting/talking to you provides some hope and allows her to discharge some of her pain onto you.  It's kind of like you are her pressure release valve. At least that's the dynamic between me and my step daughter.  I'm wondering if her medical team can help her find some other ways to release the pressure from the big feelings that she's experiencing.  

I'm really working on reassuring mine that I love her and I wish that I could hug all her hurt away but I can't.  I talk with her about her struggles as a journey and that it's her journey. No one can do it for her but she has a support network of her loved ones and professionals who can help her figure out what works for her. I think it's a good boundary that you have set with her not to be involved in her medical care. If your specialty isn't related to mental health or her physical issues, I would emphasize that while you understand a little about her challenges, her medical team members are actual experts in her challenges and they have a much deeper understanding than you do.

After emphasizing that I'm not an expert in her challenges, I ask my daughter to think about her experiences, what she's learned about BPD, and what her medical team have said to her about whatever she's worried about and encourage her to figure out what might work for her in this moment. This has helped to diminish a dynamic of my daughter seeking to get us to 'fix' her mood and other problems, us providing suggestions, and her getting angry because nothing we suggest will work. I emphasize that her dad and I aren't experts in her challenges and that we don't have THE answers that she needs.  We can love her and support her but it's her journey to figure out.  I make sure to emphasize that we would 'fix' the situation if we could because we love her so much and are grieved that she is in so much pain, but that we don't really know what to do. Sometimes this helps.  Sometimes it doesn't and she becomes angry and withdraws. I see this as a long process of helping her to take responsibility for her own illness and helping her to develop the skills to live more independently.
« Last Edit: February 13, 2021, 09:20:04 AM by KBug » Logged
Resiliant
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« Reply #12 on: February 13, 2021, 10:09:44 AM »

Hi Woody,

You said 
Excerpt
I think it is very sad but I may need to accept very little relationship with her for now.

I do fully support you in this.  As I said to Spacechase, there are three lives suffering right now.   It is important for you and your husband to be able to preserve yourselves and your relationship with each other, and so if you feel this way then follow your gut.  Things may come back around in the future once you feel like you have your own strength and sense of self back to normal - as normal as can be.

I was helping a friend once with his business, and he was excited to hire a salesperson due to the fact that the gentleman had such a long list of sales seminars, webinars, and training on his resume.  I mean a really really long list!   In the end, despite all of his training he simply could not sell and my friend had to let him go.   Why I am telling you this is that you can read all you can, educate yourself as best you can, do all the seminars in the world but the fact remains that you need to have your own healing and be of the right mindset yourself before these things can work for you.

I hope that you and your husband can work through this and find strength in your marriage.  If everyone knew when to walk away when necessary we might have a much more peaceful world.

All the best,

R
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Woody59

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« Reply #13 on: February 18, 2021, 10:25:08 PM »

Thank you all for your support.
My husband and I are talking quite a lot. He is trying to understand how I feel the wedge between us and I hope we can break that cycle. It does feel like distance is a good idea right now. I don't really want to spend time with my daughter because her life is consumed with her medical treatment and I don't want to talk about it.
She does not think she has anything to do with the strain in our relationship and would absolutely flip at the idea that she has BPD. I think until she can own some responsibility for the tension in the relationship, it will be trying.
As someone above also said, I was her "go to" for more than 20 years. She is no longer a child and I don't think I need to play that role any longer. I gave so much when she was growing up; sacrificed career opportunities, lost several friends over her interactions with their children, lots of heartbreak. It's kind of lose-lose for parents in these situations because I don't think it's possible to feel "good" watching your child suffer or feeling that you just cannot really relate to them even if there is not much you can do.
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