BPD mother going in circles with medical providers.

[Notwendy]

BPD mother has a problem with circulation in her legs. She doesn't cooperate with how to treat this, and eventually gets an infection. She then ends up in hospital for IV antibiotics and on to skilled nursing/rehab for treatment. When she returns to her assisted living, she then doesn't comply with the medical care. She's changed home health care teams over twice now, saying "she doesn't like them" or "they do nothing for her".

The way this goes is- some provider does or doesn't do something and she gets angry at them. They either refer her to someone else due to her behavior or she decides she doesn't want them and requests it. She decides on a new provider and at first, this one is painted white but eventually she gets disgruntled at something.

She has an infection now and this time, she is refusing to go to the hospital. So, the team has referred her to palliative care/hospice for care.

I agree with the suggestion to meet with them for information, because, if she refuses the medical care and doesn't cooperate- then the palliative care services provide emotional support and more comfort care and it seems these services might be helpful to her.

Then there's her family who has been supportive in general. Since I am the one the medical providers have consent to speak to - I relay the information to them. They are of the mindset to "do everything" and so when I tell them I agree with the suggestion that BPD mother speaks to the palliative care nurse to see what services they offer- they seem to resist that.

I have told them that this is her decision to make. I feel a sense of being judged by them for not insisting she go to the hospital, and also think it is likely they will intervene and get her there.

There's a wave of emotions when getting a call about BPD mother either going to the hospital or being referred to hospice. While hospice services have expanded - there is still the emotional shift from possible outcomes and with her changing her mind it's unsettling.

I don't think there's anything I can do or even should be doing in this situation. This is entirely up to her and I also want the decision to be up to her. I have suggested to her to at least just hear what they have to say so she understands her choices. I also feel a futility to discussing any plans with her since she has a history of changing them. So this post is mostly a vent and I know you all "get" it here.

[Pook075]

Hey Wendy.  Quick story; I lost my dad a few years ago.  He wasn't BPD or anything, although some dementia was setting in.  He had a rare blood disorder where his body couldn't fight off infection, and about every two weeks he'd turn sepsis.  Sky high fevers, horrible body pain, and his body would begin shutting down.  So off to the ER, where he'd get liquid IV antibiotics and he'd fully recover physically in 24-48 hours.  Only each time, each two week loop, he'd go insane in the hospital and hallucinate, forget who he was, etc.

It was absolutely horrible and we did this for almost two years.  Every 10-14 days, back to the ER to renew the cycle.

Eventually we got him on a long-term antibiotic...which truthfully there's no such thing.  The body adjusts and it become ineffective.  But it would buy him an extra week or two without a rush to the ER.  It was a blessing, but my dad was so tired and hated the meds, hated how he felt. 

So one day when he was fully there mentally, I asked him what he wanted.  He thought about it for a moment and said, "What if I stopped taking all the medications?"  I nodded and explained what that would mean, what would happen.  He said, "Well, maybe not...I'd like to try it anyway."  I respected his wishes and he went home 12 days later.

Many criticized me- my dad could possibly still be alive today.  Others praised me for having the courage to take the hardest possible path and respecting his wishes.

The truth is that we'll all eventually be where my dad was, where your mom is now.  All I hope is that once I reach that stage of life, my kids will love and respect me enough to let me make my own choices. 

Wendy, you may be in control here and have a say in what happens, and I understand that your mom has BPD.  I would encourage you to do what I did though and allow your mom's voice to be heard, even if it's not what you agree with.  If you don't, the end will be so much harder for a number of reasons.

This is ultimately not on you and it's not your burden to carry.  If something is life-threatening over something she doesn't understand, then sure...step in.  But otherwise it might be a good idea to let her live out her final wishes on her terms. 

That's just my opinion and maybe I'm wrong.  I would do the exact same thing over again with my father though, because I honored him above all else.

[zachira]

Notwendy,
It sounds like your mother will perhaps listen to her family and will not listen to anything you have to say. My mother with BPD did the sort of things your mother is doing to you regarding having me involved in her medical care. It was like my mother was terrorized with fear that she was being abandoned by me if she were to recognize that I was a separate person from her so that meant her getting angry with me for being involved in any way with her medical care. It took her doctor putting her in a two week facility with staff constantly reminding her to elevate her leg so she would not face the possibility of having her leg being amputated, which she could have done at home if she were willing to do so.
My heart goes out to you. 

[Notwendy]

Pook, at this point she is self determined and in control. I am staying out of the decison and she is meeting with the providers and calsl the shots. It's her choice.

On my part, I don't decide for her - she does have her voice. What is difficult for me is that she changes her mind. There was one day I got a call from Hospice in the morning. It was a shock- and I spent the whole day with emotions about that change. Then, I got a call from her doctor that evening- she had changed her mind and was doing better.

She has made the decisions this entire time. I can't make them for her. I have POA but only if she's in a situation where she can't decide for herself. That has happened temporarily but not at the moment and for something as big as this- she needs to be the one to decide.

I am glad your father could voice his wishes clearly and that you went with them. That is what I have been doing for BPD mother. There was a moment where she could not decide about nursing home and they asked me to decide. She was bedridden with bedsores. That decision was obvious. But she refused it and went back to assisted living-and this is what she wanted. Fortunately the bedsores healed but this other issue got worse.

Even if I did try to decide- she'd refuse it. She does what she wants, regardless. There is no chance of my intervening whether I could or not do it and there is no way I would want to attempt it unless I had to.

So my main vent is the emotions that follow the changing decisions. I try to not react emotionally but it is my mother. This is reminiscent of when my father got ill at the later part of his life. BPD mother was in control then too. It's difficult to lose a parent, even without that parent having BPD- you know that too. I agree - it's important to honor a parent's wishes but with a moving goal post- how to do that is confusing.

[Notwendy]

Notwendy,
It took her doctor putting her in a two week facility with staff constantly reminding her to elevate her leg so she would not face the possibility of having her leg being amputated, which she could have done at home if she were willing to do so.
My heart goes out to you. 

She's done that a few times already. Then she goes back to assisted living and refuses to cooperate. If they put stockings or wraps on her she cuts them off- with scissors. Then complains nobody is doing anything to help her.

[Pook075]

Pook, at this point she is self determined and in control.

Okay, stop right there.  She's in control, meaning that this is not your problem.  I'm sure it feels like your problem, which every single person here with a BPD relationship can attest to.  But it's just not on you and you have to let her do her own thing.  Not for her...but for you.

Step in if you need to.  Otherwise, let her drive the bus and dictate wherever it stops.

[Notwendy]

I am doing that- it's in her hands...

It's still emotional. We don't have a good relationship but the idea of my mother in Hospice is an emotional adjustment. Then if she changes her mind, that's another one. I still have feelings about it.

I'm not asking what to do about her decision. It's a vent. The feelings.

I think it's hard to explain. It was entirely different with my in laws. They don't have BPD. It was difficult and it was sad, but there wasn't so much chaos. MIL died a natural death at old age. His father was ill with several medical issues. They also arrived at the decision for Hospice care. My H was able to be with him, calmly. It was difficult but without BPD chaos.

Dad's passing was traumatic, with BPD mother raging, changing decisions, changing doctors, painting home health care workers black and dismissing them. Dad angry and frustrated at the situation. Me being left out of the information loop if BPD mother was angry at me.

I have been hands off with my BPD mother but she also has only her children as next of kin. For me to be not involved would be a form of abandonment. I can not be involved in her decisions but to not have feelings about the situation would be tough. So I don't plan any action. Just venting her to share the feelings.

[Pook075]

I am doing that- it's in her hands...

It's still emotional. We don't have a good relationship but the idea of my mother in Hospice is an emotional adjustment. Then if she changes her mind, that's another one. I still have feelings about it.

I'm not asking what to do about her decision. It's a vent. The feelings.

I think it's hard to explain. It was entirely different with my in laws. They don't have BPD. It was difficult and it was sad, but there wasn't so much chaos. MIL died a natural death at old age. His father was ill with several medical issues. They also arrived at the decision for Hospice care. My H was able to be with him, calmly. It was difficult but without BPD chaos.

Dad's passing was traumatic, with BPD mother raging, changing decisions, changing doctors, painting home health care workers black and dismissing them. Dad angry and frustrated at the situation. Me being left out of the information loop if BPD mother was angry at me.

I have been hands off with my BPD mother but she also has only her children as next of kin. For me to be not involved would be a form of abandonment. I can not be involved in her decisions but to not have feelings about the situation would be tough. So I don't plan any action. Just venting her to share the feelings.

Gotcha.  I'm so sorry you're stuck...it sounds endlessly frustrating.

[TelHill]

I am very sorry, Notwendy.  I'm sorry about the extra added stress caused by the other side of the family.

Am hoping she'll change her mind and will take the antibiotics. But it's definitely her choice not to.

My dBPD mom seems to like to cut off her nose to spite her face. With the hospitalization before this last one she continued to pull out her feeding tube leading her doctors to tell us she'd be sent to a hospice if this continued. She stopped and and recovered.

She asked me in a roundabout way after her last hospitalization to hasten the inevitable.  I ignored her. It was a horrible thing to ask me to do - like the cherry on top of her abusive treatment of me. Definitely didn't want to live with this for her convenience. It was completely selfish to ask me. Continued entitled behavior.

Please continue to vent. We certainly do know how it is.

Thinking good thoughts for you. 

[Notwendy]

Even when she was healthy, she has been emotionally miserable for as long as I can recall. There were moments of contentness but it didn't last long. It's not depression. It's her BPD that seems to interpret anyone close to her as somehow hurting her or neglecting her.

It's as if she had no skin, and every nerve is exposed. She coped with self medicating- alcohol and prescription medicines- tranquilizers, pain medicine, valium. Most of the time she was on one or more of these. It actually didn't help her when these drugs became regulated as she was able to get what she needed by seeing more than one doctor. Computers and regulations made this difficult but she found ways to get around it. I was upset when I saw that my father was enabling this. I get it now. She is so unhappy without them. It gave her some relief. But since she did this, she was so drugged up she was incoherent. We were afraid she'd fall in her house.

We put hopes into moving her to assisted living that maybe it would make things easier for her and if her medicine was dispensed by the nurses, she would be less drugged up. She knew a few people there already. They had a dining hall and activities. We hoped she'd be happy there but she wasn't. Without the option of over drugging herself, she found other ways to self soothe that were also self destructive. She also would seek out medical care for an issue, then be non compliant. She's had two rounds of hospital stays with several weeks in skilled nursing rehab. She was miserable there. When she returned to assisted living, she was non compliant and has gotten sick again.

So far, three nurses have told her to go to the hospital. She has refused. I asked again if she was competent to make this decision. I am told yes she is. She is considering Hospice but her nurse coordinator thinks she will change her mind when asked to sign the papers and then go to ER.

She says that people do not acknowlege her pain. We've been the witnesses to her emotional pain and yet so powerless to make a difference. It's like she can not see other people's attempts through the distorted BPD thinking. We are all the persecutors on the Karpan triangle. She wants others to try to rescue her but she also then hikacks it and we ultimately fail. But we keep trying.

I am staying out of this decision. It's entirely hers to make. On one hand, there's more hope for her if she goes to the hospital. With Hospice, they will focus on her comfort and there is a certain appeal to her being more comfortable but it also comes with a different outcome. My feelings are all over the place.

[zachira]

One way or another, your mother is going to make decisions about her care that she is going to be unhappy about and blame everyone around her for how unhappy she is.
What are you doing to take care of yourself at this terribly stressful time?

[Notwendy]

I still have work and also we have gone out of town a few times, so it's not all my attention.

But there are feelings and actually, I want to spend time processing. There are similarities to when my father got ill. I didn't understand BPD dynamics then. I do now and so I don't think I react to the behaviors as much which is a good thing. I feel empathy for her but still feel I need to be guarded.

I don't think I can detatch from this, and don't want to. It felt different when my father was sick, as I was so attached. Yet, it's not as if there are no feelings at all for her. She's a significant person, even if she didn't take on the role of "mother" in the typical sense. It's like when I look for a Mother's Day card and none of the sayings in the cards seem to fit. And the feelings around this situation don't seem to fit others either but I do want to process them.

[Denim]

Okay, stop right there.  She's in control, meaning that this is not your problem.  I'm sure it feels like your problem, which every single person here with a BPD relationship can attest to.  But it's just not on you and you have to let her do her own thing.  Not for her...but for you.

Step in if you need to.  Otherwise, let her drive the bus and dictate wherever it stops.

Thank you for saying that. As a parent of an adult BPD son it feels like it's always my problem when I know in my head it isn't. Thank you so much for reminding me.

[Methuen]

As the saying goes, you can lead a horse to water, but you can't make it drink.

What you are describing is crazy making material.  Sadly, it's not surprising at all.

She has an infection now and this time, she is refusing to go to the hospital. So, the team has referred her to palliative care/hospice for care.

I agree with the suggestion to meet with them for information, because, if she refuses the medical care and doesn't cooperate- then the palliative care services provide emotional support and more comfort care and it seems these services might be helpful to her.

Absolutely.  The fact that her side of the family disagrees with this is unfortunate, but it's your mom's choice.  And you are supporting her.  Since the medical staff say she has full competence to make these decisions, your hands are tied.

If she changes her mind and flips back and forth between hospital and hospice, then all those involved in her medical care can continue to deal with it either in hospital or hospice.  Those people can't expect you to reason with her or solve this problem, because our BPD mom's just aren't fixable.  There is no way for us to guide them to make better decisions when the disease is in the way.

I understand what the recommendation to hospice means.  But this too is her decision.  If her family doesn't support it, then they can be the ones to have that conversation with her.  It doesn't make any sense for them to be displeased with you for supporting her.  That is between them and her, and good for you to step off that triangle.

I have a similar situation, but it doesn't involve hospice.  In my mom's case, she has made decisions which have predictably led to a loss of vision.  This loss could have been avoided if she had followed recommendations and accepted help to have her eye drops put in.  But she cancelled this home support.  Since she has Parkinson's, she can't get her drops in her eyes, but she tells everyone she does.  So now she is losing her vision.  It makes no sense to argue with mom.  We all know where that would lead.

Your situation is so much worse because it sounds life threatening if she refuses these antibiotics.  But the principle is the same.  

You are just supporting her.  We're all uncomfortable with the outcomes of our mothers poor decisions, but they have the right to make those decisions.  Sadly, we are left dealing with all the uncomfortable feelings around the outcomes that come with their bad decisions.

I am staying out of this decision. It's entirely hers to make. On one hand, there's more hope for her if she goes to the hospital. With Hospice, they will focus on her comfort and there is a certain appeal to her being more comfortable but it also comes with a different outcome. My feelings are all over the place.

I think you are in an impossible situation.  I would respond to what is going on the same way you would, and totally support where you are coming from.  If her family disagrees with this, then they can take it up with her.  If she flip flops in her decision making between hospice and hospital, there is nothing you can do about that.  It's out of your control.  All you can do is look after yourself in all this.  I know you are trying to be kind to yourself, so please take especially good care of yourself through this.  

Supporting you all the way

[zachira]

Notwendy,
You are taking the needed precautions to protect yourself from the worst of PTSD flashbacks later on by doing everything to process what is going on with your mother right now while protecting yourself from becoming overwhelmed as much as you can.

[Notwendy]

Dad's passing was difficult.  BPD mother's behavior escalated- lots of raging. Dad was angry too- and so would also snap at me. I can see this is probably projections but it was also verbal and emotional abuse- and overwhelming. So yes, I am trying to avoid that kind of situation with BPD mother. Fortunately I have more understanding of BPD dynamics now.

BPD mother is doing the same thing with her caregivers and medical providers. I recently spoke to one of the nurses caring for her who said that BPD mother is telling people she's terrible and I reassured her that I don't believe it. BPD mother told me another nurse is crazy and that isn't true.

She says the staff at the assisted living isn't doing anything for her but they do attend to her needs. The staff doesn't like being verbally abused so they aren't overly attentive to her.

Methuen- BPD mother's family is being supportive but that hasn't always been the case. They have misjudged me in the past. Just as BPD mother is saying things about the nurses that aren't true, she has also said things to them about me. It's possible that my concerns about being misjudged by them now are unfounded but I am not sure. Our relationship is better now but for me, I think I will feel uncertain around anyone in my mother's circle.

Your mother is doing something similar by not taking the eye drops. She is seriously impacting her ability to be independent. This "in between state of being mentally ill while still being "legally competent" is hard to make sense of.

[Mommydoc]

Notwendy, this is a horrible place to be. I haven’t been on the forum and am catching up. I think you are handling this situation in the best way possible. I am glad her family is coming around. I love your self awareness. Like you when my father died I didn’t understand BPD and therefore my sister’s behavior didn’t make sense. Even though our journey to understand this disorder better equips us, it does not really protect us from the complex emotions. I hope you can focus on naming and processing your emotions, so that you can work through them and put the focus on your own healing.

I suspect your mother’s cycle will continue to repeat itself. She will also probably change her mind, and ask to come off of hospice, or go back and forth. I hope this doesn’t sound harsh but your mother’s lack of compliance with medical advice is the main factor in her continuing medical decline and she is wasting a lot of resources. Being in palliative care allows for continued medical care (versus hospice that is limited) , but the focus is on emotional and physical support. I am hoping it helps her. I encourage you to take advantage of the social worker and emotional support that come with both palliative and hospice care, as I think they are uniquely positioned to understand and support you. They are focused on the family, not just the patient, and will validate and understand the challenges of your situation, respecting your mother’s decisions , while disagreeing with them and the resulting burden this puts on you emotionally.

Hugs and prayers. You will get through this.

[Notwendy]

Thank you Mommydoc- it's not harsh - it's the reality- and continuing to access acute care and then being non compliant is undoing the benefits of acute care. She's already cycled through this and this is the result.

I can see the benefits of palliative care for her, especially with management of emotional and physical discomfort. I think in some ways it meets her emotional needs better. However, I also understand the gravity of such a decision- it needs to be hers.

Thanks for letting me know that the services are to help support family too. With my father I was initually more involved with speaking to the medical providers but I also felt I needed to be honest with them about the situation at home with BPD mother so he could receive support. This angered both my parents and so I backed off. Then they got angry at me for that. On my part, there was so much fear.  It would have helped to have someone to talk to at the time.

[Lalisa]

My heart goes out to you NotWendy. You are doing your best and from all your posts and the supports you give to other people on this forum, it is clear what a compassionate, kind and generous person you are. Be kind to yourself.
My mother is uBPD, but diagnosed with bipolar and she now has vascular dementia. She lives alone in an isolated spot and does nothing at all to help herself. I am her only child and now at 44 am finally trying to release myself from a life timelime of FOG and emeshment. Mum also refuses medical treatment and any outside help, the only thing she wants is for me to give up my life and be at her disposal 24hours. I totally understand when you say you feel you are being judged. It is so hard for anyone unfamilar with BPD to understand the challenges we live with.

Be kind to yourself during this time. Sending solidarity xx

[TelHill]

My mother is uBPD, but diagnosed with bipolar and she now has vascular dementia. She lives alone in an isolated spot and does nothing at all to help herself. I am her only child and now at 44 am finally trying to release myself from a life timelime of FOG and emeshment. Mum also refuses medical treatment and any outside help, the only thing she wants is for me to give up my life and be at her disposal 24hours. I totally understand when you say you feel you are being judged. It is so hard for anyone unfamilar with BPD to understand the challenges we live with.

Lalisa, Am sorry you are in that situation. I hope you are able to find a way to secure outside help. This is totally unfair to you. You deserve your life back.

Do you need her permission if she has vascular dementia? Will she even be aware? (I believe it's brought on by a stroke.) She needs some hours of professional help. What about a care or nursing home? Dementia never improves. What's left of her cognitive abilities will degrade further.

24/7 care is what my dBPD demanded and I gave mistakenly gave. For her, it was a self-created crisis. (I left over three years ago.) It did her no good other than to whet her appetite for more outrageous demands and nasty abuse.  She's still alive and doing well for someone her age and health issues despite my absence as a caregiver.  Am thinking the same would be true for your mom.

Notwendy, my late ex-h had circulatory problems in his lower legs and a pd. He had cellulitis along with other serious health problems. He ignored all common sense to take care of it. He was non-compliant and skip appointments unless I went with him. I suspect he thought he was a superior human being who would cheat death through his strong self-will.

My mom is a bit more realistic (she would take the antibiotics if in the same situation), but has refused to go to the ER unless the pain is unbearable. She broke her shoulder and hip - she waited a few days for medical care. I know some type of magical thinking along with arrogance must be at play. My mother doesn't have suicidal ideation and hasn't attempted it, except for the last hospitalization which was long (2 weeks) and agonizing. She was forced into quarantine in her nursing home for 21 days where she was exposed to an antibiotic resistant bacteria in the hospital's ICU.

I wonder if your mother believes she will one-up a medical reality through being stubborn or make it go away by ignoring it? I don't know. Am hoping she does the prudent thing.

[Notwendy]

I am not sure what is driving my BPD mother's behavior. I think she does have an element of magical thinking. It's as if there's some kind of block with her to being proactive. Discussing her spending is an example. She seems oblivious to the fact that once it is gone, it's gone.

I think it comes down to her sense of entitlement and not wanting to have any discomfort. She expects that her medical providers will be able to fix anything for her. Her condition depends a lot on her cooperation but if the socks or bandages are tight and she doesn't like that, she just takes them off and expects others to take care of any issues that causes.

With over spending her money, I think it's entitlement. She wants what she wants. If there are any consequences later, that isn't her concern in the moment.

Both of these are self destructive behaviors but she doesn't seem to care.

Tell Hill- I don't know what led to your ex H's demise but this condition is miserable and in itself, not fatal but the consequences of not taking care of it are miserable. It's hard to understand why someone would no try to help prevent them.

[Notwendy]

At this time, BPD mother is staying with "palliative" which is different from hospice care. She didn't meet criteria for hospice care. At a recent doctor appointment, they requested I also listen in by phone. I think this is probably a safety measure for them so that they aren't at risk for her choice. So far she's been adament about wanting palliative care but this still involves treatment, just not hospital or IV treatment. So far, I think her legs have not gotten worse.

I also think they probably wonder about her mental capacity but when questioned, she is competent. She can clearly recall all her identifying information. She knows current events, time, place. When motivated, she acts as sharp as ever.

[TelHill]

Hi Wendy,

The late ex-husband had a lot of health problems starting in his mid 40s. He had deep vein thrombosis (the first major problem) which pointed to heart problems. In the 15 years between that and his death,  he had high blood pressure, high cholesterol, pre-diabetes, and pneumonia. I noticed his swollen, red ankles. That led to a diagnosis of 2 leaky heart valves which his doctor thought caused the cellulitis. He was in his mid 50s which his doctor thought was young.

He never took care of himself. He would have died a lot sooner had I not pushed him and accompanied him to doctor visits. It wasn't a slow suicide but delusional thinking that he would die close to 100.  I am guessing he enjoyed the attention and enjoyed upsetting me. I can't tell you the harsh judgment I received from neighbors and new doctors about the state of my ex. I took many hours off from work to force him to go to his appointments. Doctors would eventually see for themselves that he was stubborn and had mental problems. They'd shift the harsh judgment to him.

He died of a heart attack at 60. We were divorced by then and he was living alone. He missed lunch with a friend and the friend had a wellness check done. An autopsy was done by the county.

Am glad for your mom's sake she's in palliative care and can live with the infection for now. I know how stressful (& lonely)  these issues are and the judgments from others -- the why can't you do this, why can't you do that -- don't help. You are doing the best you can.

P.S. I can't help but think there is bias against females with a sick immediate relative. My mother's behavioral problems are my fault... until my brother steps in and he's the gold medal winner for just showing up. The behavioral problems stick to mom alone at that point.

[Notwendy]

It wasn't a slow suicide but delusional thinking ..... I am guessing he enjoyed the attention and enjoyed upsetting me. Doctors would eventually see for themselves that he was stubborn and had mental problems.

Am glad for your mom's sake she's in palliative care and can live with the infection for now. I know how stressful (& lonely)  these issues are and the judgments from others -- the why can't you do this, why can't you do that -- don't help. You are doing the best you can.

P.S. I can't help but think there is bias against females with a sick immediate relative. My mother's behavioral problems are my fault... until my brother steps in and he's the gold medal winner for just showing up. The behavioral problems stick to mom alone at that point.

I think there is some element of delusion with my mother too but I can't quite figure it out. On some level, I think she wants to be completely helpless, dependent and without any responsibility. She wants her doctors to fix her but won't do her part in that.

She says that going to hospital for IV antibiotics "didn't work" but it did work, she just didn't do anything to manage what is a chronic situation. If someone had diabetes, taking insulin "won't work" if they think they can eat whatever they want to. They'd have to do their part in managing their diet and blood sugar too. I agree that going to the hospital isn't as helpful if she isn't going to do her part in helping.

She's now discovered another aspect of her decision. It's very painful. She's had two more doctor consultations, with the explanation that a bacterial infection is destroying her skin and tissues and that is causing the pain. If she wants relief of the pain, she needs to do something about it. They have arranged for her to take care of this as an outpatient in a wound care center. She balks at this because it's a hassel to get there and do this. Whatever anyone proposes to help- she finds some reason why she "can't do it". So I put it to her bluntly- she has two choices- to agree to do what her doctors suggest and have some hope of feeling better or to do nothing which would be very painful ( and horrible ) so I hope she makes the reasonable choice.

I do think there is a bias that daughters and wives are the caregivers. I think at this point, the medical providers who are helping my mother are also frustrated at her behavior and see that she's difficult to deal with. I am impressed at how her doctors are relating to her.

[Mommydoc]

Hi NotWendy, sorry to hear about your mother’s skin infection. Even though the situation is chronic and treatable now, if she remains non compliant and is not cooperative with the treatment plan, it could progress to a much more serious acute infection and even become life threatening. The doctors may have already explained this to her and to you. Unless and until, she is deemed unable to make her own decisions, you are powerless. It seems like the more you try to influence her the more defiant she will become. 

I agree that our society, including many doctors, expects women to be the caregivers. It is great that her doctors are engaged and trying to relate and influence her, as many would get frustrated and give up. I hope the situation stabilizes and hope you are able to emotionally separate yourself from it.

[TelHill]

I had an infected foot long ago and had to take very strong antibiotics to prevent the infection from spreading. The antibiotics made me feel weak and tired for a few weeks. Your mom may have experienced that or is afraid of antibiotic resistance? I know your mother remains firm in her decision. I thought it might help you to know there could be a reason besides BPD for her decision.

[GaGrl]

I had an infected foot long ago and had to take very strong antibiotics to prevent the infection from spreading. The antibiotics made me feel weak and tired for a few weeks. Your mom may have experienced that or is afraid of antibiotic resistance? I know your mother remains firm in her decision. I thought it might help you to know there could be a reason besides BPD for her decision.

So true! I was in hospital during the holidays to get I/V antibiotics to resolve a resistant UTI. I came home quite anxious about future situations -- I am allergic to penicillin and so have more limited options.

I learned so much when my mom was in home hospice. I am the only surviving child, so between her long-time caregiver and my retiring to move to my hometown, the two of us dealt with what might come up. Mom had cellulitis, on and off, some minor skin problems, etc. We were able to bathe her more often than would happen in a facility -- that helped. I've never worked so hard keeping a room clean, plus laundering bedclothes, nightgowns, bed protective pads, you name it. Honestly, I think the near-OCD cleaning made a huge difference.

I know of no male in my family except one cousin (a social worker) who cared for a parent in home. But the assumption "out there) is that a daughter will do it.

My mom had a few BPD traits but she definitely was not fully BPD. I at least heard her express appreciation so many times. Her friends were appreciative. It would have been horribly difficult to have to stand back and follow the lead on bad decisions.

[Notwendy]

I had an infected foot long ago and had to take very strong antibiotics to prevent the infection from spreading. The antibiotics made me feel weak and tired for a few weeks. Your mom may have experienced that or is afraid of antibiotic resistance? I know your mother remains firm in her decision. I thought it might help you to know there could be a reason besides BPD for her decision.

She won't take them because she says she gets diarrhea ( not C diff, just says loose stools) but even with this complaint, the nurses have checked her stools and they are not loose.

So she refuses them on the basis of her imaginary diarrhea while in the meantime letting her foot get gangrene.

She woke up this morning in very bad pain unable to get out of bed and then refused to take the oral antibiotics her doctor ordered. She had two doctors spend an hour each with her last week, "respecting her wishes" and coming up with a plan to treat the infection as a component of relieving her pain. Now, she's refusing that. I called it. I called 911. She's refused all possible options offered to her and now she's in miserable pain. Yes, she may get sepsis, but in the meantime, her foot is rotting off - she's not eligible for hospice. She is non compliant with the outpatient managment plan.

Everyone would be willing to respect her wishes but her wishes are to lie in her bed and do nothing and have no discomfort. That isn't an option. To reduce her pain she needs to do something. She's also insisting on being in assisted living and the staff isn't going to tolerate her lying in bed with an infected leg and do nothing. I spoke to the nurse there this morning. He agreed with the plan to get her to hospital. She's emotionally stressed her nurses and her family members.

[GaGrl]

NotWendy, this sounds as if she is losing the ability to be rational about her own care. It's difficult to figure out when to intercede. I had one doctor ask my mom about her Do Not Resuscitate order, and he still looked at me to be the person validating that she knew what she was doing.

The possibility of septicemia is is alarming. My husband's mother became septic in hospital during treatment for leukemia, and it caused her death.

Are you getting assistance from her medical team in helping you to determine when and how completely to step in?

[Notwendy]

I am wondering now about how to make her a ward of the state and if that is an option. She's become impossible to deal with. I have not gotten support from her medical team as until now, she's been considered legally competent but she isn't compliant with anyone. I wish there was some kind of psychiatric placement for her. But I am getting to the point where her constant crises are taking up hours of my day. My husband is concerned about this.