Seeking advice re: dealing with bipolar parent.
December 28, 2022 1:39 AM Subscribe
Bipolar parent resisting treatment. Seeking perspective on how to deal with this.
Hi folks, it's me, back with my thousandth 'care of my sick parent' question.
My mom (67) has bipolar disorder. She also has many other health issues (physical) that need care and monitoring. As my previous AskMe questions have detailed, I've been organising her health care and arranging for 24/7 home help for her. She's been repeatedly ill with various physical issues over the past 6 months. She's recently started showing early signs of another manic episode. She's currently functional, but totally convinced she is 100% well even though she has a few worrying physical symptoms that need to be looked at. She flies into a rage when my siblings or I tell her that so-and-so symptom needs to be checked, or that she is due a check-up with her doctor. If I mention this it is a trigger for towering rages, days and days of silent treatment, etc. If you leave her alone/let her do what she wants she comes across as normal/rational.
She's on medication for her bipolar, but it probably needs adjusting; she absolutely refuses to see a psychiatrist; even mentioning that makes her absolutely furious. She's convinced the problem is with the rest of us.
She has had much worse manic episodes than this, including violence and psychosis.
Her main complaint is that my siblings and I are too concerned with her health and 'treat her like a sick person'. I get that she feels disempowered because I've been managing her medical care, but she has no memory of having NEARLY DIED earlier this year because of undiagnosed kidney issues; I took her to hospital and made sure she got seen by someone. Since then I've been very closely involved in her ongoing health care. She is better currently, physically, than she has been for 6 months.
The home help are able to make sure she stays physically safe, and takes her meds on schedule; but they can't make medical decisions for her. She does not listen to them and screams at them if they tell her she needs to see her doctor.
My question is really an ethical one. She's refusing intervention. She won't listen to advice. But she's not thinking rationally. If she were, I would have fewer qualms about this. I believe in respecting people's autonomy and their own decisions about how to live their life, even if it seems harmful; but firstly this is my mom and secondly she is not well. I just keep imagining her gradually coming out of her mania (as she always does) and asking me why I didn't do more to protect her. Not that she's ever asked me this. I just don't really know how far to respect the autonomy and decision-making ability of someone who is ill and confused. Should I just let her live her life even though I know that if she continues this way she may end up dangerously ill again, God forbid? (Then of course my siblings and I will have to deal with it!)
I live in a different country but am going to see her in a few weeks (something I'm dreading).
Please be gentle; this is all very hard for me to deal with.
Hi folks, it's me, back with my thousandth 'care of my sick parent' question.
My mom (67) has bipolar disorder. She also has many other health issues (physical) that need care and monitoring. As my previous AskMe questions have detailed, I've been organising her health care and arranging for 24/7 home help for her. She's been repeatedly ill with various physical issues over the past 6 months. She's recently started showing early signs of another manic episode. She's currently functional, but totally convinced she is 100% well even though she has a few worrying physical symptoms that need to be looked at. She flies into a rage when my siblings or I tell her that so-and-so symptom needs to be checked, or that she is due a check-up with her doctor. If I mention this it is a trigger for towering rages, days and days of silent treatment, etc. If you leave her alone/let her do what she wants she comes across as normal/rational.
She's on medication for her bipolar, but it probably needs adjusting; she absolutely refuses to see a psychiatrist; even mentioning that makes her absolutely furious. She's convinced the problem is with the rest of us.
She has had much worse manic episodes than this, including violence and psychosis.
Her main complaint is that my siblings and I are too concerned with her health and 'treat her like a sick person'. I get that she feels disempowered because I've been managing her medical care, but she has no memory of having NEARLY DIED earlier this year because of undiagnosed kidney issues; I took her to hospital and made sure she got seen by someone. Since then I've been very closely involved in her ongoing health care. She is better currently, physically, than she has been for 6 months.
The home help are able to make sure she stays physically safe, and takes her meds on schedule; but they can't make medical decisions for her. She does not listen to them and screams at them if they tell her she needs to see her doctor.
My question is really an ethical one. She's refusing intervention. She won't listen to advice. But she's not thinking rationally. If she were, I would have fewer qualms about this. I believe in respecting people's autonomy and their own decisions about how to live their life, even if it seems harmful; but firstly this is my mom and secondly she is not well. I just keep imagining her gradually coming out of her mania (as she always does) and asking me why I didn't do more to protect her. Not that she's ever asked me this. I just don't really know how far to respect the autonomy and decision-making ability of someone who is ill and confused. Should I just let her live her life even though I know that if she continues this way she may end up dangerously ill again, God forbid? (Then of course my siblings and I will have to deal with it!)
I live in a different country but am going to see her in a few weeks (something I'm dreading).
Please be gentle; this is all very hard for me to deal with.
I don't know what legal framework and service provision you're working with, but I'd say the important thing is whether she has capacity to make her own decisions about treatment. Bearing in mind capacity can fluctuate and people can have the capacity at a particular time to make some decisions and not others. It sounds like you're on the fence about this, leaning towards her not having capacity.
You might find Advance Planning for people with bi-polar disorder helpful. There is a longer and more general resource about capacity here: Decision-making and mental capacity: NICE guideline.
When we had a family member with dementia who had fluctuating and sometimes unclear capacity to make her own decisions, we employed an advocate (a social worker in this case) to ensure she had support to talk through her decisions, and to help her articulate them - I don't know if this would be an option where your mother is. We did decide not to treat some health issues where we thought she didn't have capacity to make the decision herself and we thought that the benefits were not worth the treatment (specifically the confusion and upset treatment would have caused her). I'm sorry, it sounds very painful for you.
posted by paduasoy at 5:35 AM on December 28, 2022 [3 favorites]
You might find Advance Planning for people with bi-polar disorder helpful. There is a longer and more general resource about capacity here: Decision-making and mental capacity: NICE guideline.
When we had a family member with dementia who had fluctuating and sometimes unclear capacity to make her own decisions, we employed an advocate (a social worker in this case) to ensure she had support to talk through her decisions, and to help her articulate them - I don't know if this would be an option where your mother is. We did decide not to treat some health issues where we thought she didn't have capacity to make the decision herself and we thought that the benefits were not worth the treatment (specifically the confusion and upset treatment would have caused her). I'm sorry, it sounds very painful for you.
posted by paduasoy at 5:35 AM on December 28, 2022 [3 favorites]
I don't have any advice as such, only to let you know i have been through this with my mother, until she passed away in December 2019. My heart goes out to you. It is very difficult and actually impossible to look after a mentally ill parent.
My mother had multiple and severe health issues, and also mental health issues that impacted her life powerfully.
What can say, in hindsight i am glad i never did have power of attorney. She wanted me to but i declined, as did my siblings. As it was, i was by far overwhelmed by what she did allow me to do, and glad that i was not legally liable or responsible for her more fantastic actions.
Re the ethical question, i revisited this question often. Many times i sought the advice of hospital social workers and found them very helpful. There was a situation when the decision was either a medical procedure she might not survive, or death but prolonged dying if the procedure was not done, or do procedure succesfully and have 6-8 more months. My mother initially refused and later consented. I am still very glad that whilst her treating team wanted my opinion i was not the person to decide, they had her evaluated for mental competency and told me she was able to decide. She survived the risky procedure and had a good last 6 months.
Whatever you decide, ensure that you have competent support for yourself. For me this was my therapist and her social workers.
posted by 15L06 at 10:48 AM on December 28, 2022 [1 favorite]
My mother had multiple and severe health issues, and also mental health issues that impacted her life powerfully.
What can say, in hindsight i am glad i never did have power of attorney. She wanted me to but i declined, as did my siblings. As it was, i was by far overwhelmed by what she did allow me to do, and glad that i was not legally liable or responsible for her more fantastic actions.
Re the ethical question, i revisited this question often. Many times i sought the advice of hospital social workers and found them very helpful. There was a situation when the decision was either a medical procedure she might not survive, or death but prolonged dying if the procedure was not done, or do procedure succesfully and have 6-8 more months. My mother initially refused and later consented. I am still very glad that whilst her treating team wanted my opinion i was not the person to decide, they had her evaluated for mental competency and told me she was able to decide. She survived the risky procedure and had a good last 6 months.
Whatever you decide, ensure that you have competent support for yourself. For me this was my therapist and her social workers.
posted by 15L06 at 10:48 AM on December 28, 2022 [1 favorite]
My experience is with elders with dementia, not bipolar disorder, but in case this helps:
One of my relatives also had no memory of a significant medical crisis, and later refused to see the doctor. We had them look through their discharge paperwork, which had their personal details, a summary of the event, and directions for necessary follow-up appointments for monitoring. Having that file in front of them, "in black and white," reduced resistance in that particular situation. Wishing you and your family the best, unicorn chaser.
posted by Iris Gambol at 1:13 PM on December 28, 2022 [2 favorites]
One of my relatives also had no memory of a significant medical crisis, and later refused to see the doctor. We had them look through their discharge paperwork, which had their personal details, a summary of the event, and directions for necessary follow-up appointments for monitoring. Having that file in front of them, "in black and white," reduced resistance in that particular situation. Wishing you and your family the best, unicorn chaser.
posted by Iris Gambol at 1:13 PM on December 28, 2022 [2 favorites]
Does she have an advanced medical directive? At her age I should think she would.
I think this is an interesting question, ethically. I would say that ethically you, as her child, hold no particular responsibility to sort this out for her, but also, ethically, we have a duty to each other as human beings to help each other in times of need. So I guess the fine line here is deciding when that need is really present. It might be a matter of framing it out with your mom, like, having a conversation with her where you try to have her get curious about what could happen in xyz scenario (such as the kidney failure one you mentioned) if other people weren't there to advocate for her like you did. Because she might want to be left to die on her own terms - it at least, say she wants that, whether or not that would actually be the case. But it seems like you are taking on a lot for yourself regarding your mom when it ought really be a whole community/network involved, so what do you ethically owe yourself? Everyone said to me, "do what's right for you" but what I thought was conceptually right was also very different from what was well and truly right for me, because it can be very difficult to tease that out in stressful times. I'm sorry, this is probably not very helpful! If anything, try to get social workers, case managers, lawyers, and other medical staff involved to make all of this much easier on you! I'm pretty sure that my dad's doctor essentially strong-armed me into understanding that keeping my dad on a high calorie feeding tube with medical interventions in place was only uselessly prolonging suffering-- and that I would not have been able to understand or decide just when to stop interventions and the feeding tube without her help. So she, in essence, made the ethical decision and then helped guide me to clarity to be the one who actually chose that for him, as his POA. I'm so sorry you're going through this!
posted by erattacorrige at 6:33 AM on December 29, 2022 [1 favorite]
I think this is an interesting question, ethically. I would say that ethically you, as her child, hold no particular responsibility to sort this out for her, but also, ethically, we have a duty to each other as human beings to help each other in times of need. So I guess the fine line here is deciding when that need is really present. It might be a matter of framing it out with your mom, like, having a conversation with her where you try to have her get curious about what could happen in xyz scenario (such as the kidney failure one you mentioned) if other people weren't there to advocate for her like you did. Because she might want to be left to die on her own terms - it at least, say she wants that, whether or not that would actually be the case. But it seems like you are taking on a lot for yourself regarding your mom when it ought really be a whole community/network involved, so what do you ethically owe yourself? Everyone said to me, "do what's right for you" but what I thought was conceptually right was also very different from what was well and truly right for me, because it can be very difficult to tease that out in stressful times. I'm sorry, this is probably not very helpful! If anything, try to get social workers, case managers, lawyers, and other medical staff involved to make all of this much easier on you! I'm pretty sure that my dad's doctor essentially strong-armed me into understanding that keeping my dad on a high calorie feeding tube with medical interventions in place was only uselessly prolonging suffering-- and that I would not have been able to understand or decide just when to stop interventions and the feeding tube without her help. So she, in essence, made the ethical decision and then helped guide me to clarity to be the one who actually chose that for him, as his POA. I'm so sorry you're going through this!
posted by erattacorrige at 6:33 AM on December 29, 2022 [1 favorite]
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where this book is recommended: https://www.amazon.com/Someone-Illness-Treatment-Anniversary-Edition/dp/0967718937#aw-udpv3-customer-reviews_feature_div . It looks like it could be useful.
When she’s no longer manic, perhaps you could discuss how to approach future episodes.
You may wish to consult with a lawyer as well, about POA.
When it came to my dad, who we thought had untreated bipolar, but it turned out had FTD (or perhaps had one then the other, it’s unclear), it was complicated. He would have passed legal tests for competency. We were told that “people have the right to make bad decisions”. (Laws may differ where you are.) Basically we had to wait until things got worse before we could step in. I hope that’s not the case for your mom and that you’re able to reach her.
posted by cotton dress sock at 2:38 AM on December 28, 2022 [3 favorites]