Where is my mother? (warning possible triggers)

Warning! Possible triggers regarding childhood abuse, the dying, and prolonging death in the dying. (sorry!)

I have a lot of stories about my crazy, violent, abused childhood. I guess most are stranger than fiction but it seems to never end, and what's going on now is pretty wild, too.  I'm going to really try to keep it short!
 

My 88 year-old mother has had dementia and congestive heart failure for several years. Last July, she was given a 6-8 month prognosis from her doctors.

Her dementia was not too bad - she recognized her children and could hold a conversation. Even as things got worse in last summer, she faded in and out, but when she was cognizant, she knew what was going on, who we were, and could recall memories from her past. 

But in December, she had an ischemic stroke and was found breathing shallowly but unresponsive in her room. After many tests, the hospital did not admit her, and sent her instead to hospice care. She had cerebral atrophy and could not talk or swallow. She was given morphine and made comfortable and we said our good-byes.

But she was not to die yet. She was taken during the night without her pain killers or oxygen. My brother's son had recently filed for guardianship over her person and property (my brother has a criminal record so was not eligible to apply), so they kidnapped her to buy more time.

Despite working with the care facility, the Sheriffs, and Adult Protective Services, the rest of her family could not find her for a month. During Christmas, we did not know if she was dead or alive. 

We found out that my brother and his son took her to a distant hospital, lied about what had happened to her, lied about her real medical POA's (said they were), and had her hooked up to all possible life-saving and extending devices known. My nephew even supplied illegal guardianship papers he printed from his computer, and the hospital did not question anything.

When we finally found her in January, she was still unresponsive but would blurt out words like ow and help, and hello.

She is still alive. Her permanent catheter has caused raging UTIs, she has survived bedsores, too, and  just got through two weeks in the hospital with septic shock. She is still unresponsive, and the only random word she says now is "hi."

I wonder where her mind is? Is she basically on the "other side" or does she hear what's going on around her at the nursing home? Or is she just in a dark void, waiting for death to release her? I really wonder.

Maybe you have some suggestions? Any words of comfort or just your thoughts?

Thanks for reading, again apologies I know it's pretty dark.   

I'm so sorry.  I can't imagine what this is putting you through.  I came from a very abusive home as well but I chose to cut off all contact in my early 20's. 

Is there anyone you can speak about this with?  The legal stuff you've got help, but what about help for you?

Aw, thanks, and good for you! Sometimes I wish I'd have done that.

I have a sister I have grown very close to, especially since we both lost our other sister a couple of years ago. We have been fighting the battle side-by-side, and talk daily. My husband is a great support, and I also have very good friend in town, but they get tired of hearing about it if I go on and on. So, I push it out of my mind a lot, and focus on the good things in my life. My sister shares my history and is 100% in this with me. The legal battles are a huge burden, but at least we are winning.

I worked in a nursing home for years and have seen almost all the ways people can die. I don't know the purpose your brother has in keeping her alive, is he getting state money somehow? And that is exactly what he is doing, keeping her alive when she should be allowed to die with dignity. I've seen it many times and never was able to understand the reasoning behind it. Usually they can be kept comfortable on morphine, provided by Hospice, until they can go peacefully. If she is at the point of bedsores, UtI's and next will come respiratory distress and pneumonia, she should be under hospice care and allowed to go. Did she sign a DNR or have any kind of written instructions for end of life care? From talking with many people who have been on the 'other side' and have come back, I've found that the body often takes steps to 'numb' the mind and any pain and they are kind of floating in a sea of nothingness. They have told me they can hear what's going on and are aware, but cannot communicate, and really don't want to. Most of them WANT to go, and beg to do so. I feel fro you, it must be a personal hell to go through all this, I hope everything gets better for you. Good luck.

SwampWitch said:

 
Aw, thanks, and good for you! Sometimes I wish I'd have done that.

I have a sister I have grown very close to, especially since we both lost our other sister a couple of years ago. We have been fighting the battle side-by-side, and talk daily. My husband is a great support, and I also have very good friend in town, but they get tired of hearing about it if I go on and on. So, I push it out of my mind a lot, and focus on the good things in my life. My sister shares my history and is 100% in this with me. The legal battles are a huge burden, but at least we are winning.

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It's not the right decision for everyone, that's for sure.  I usually tell people that my parents and brothers/sister are dead and that it's too traumatic to talk about.  Otherwise, the questions keep growing no matter how polite and dodgy I try to be.  People mean well, and they just don't understand how judgmental their line of questioning is.

I'm glad that you have a support system.  That's so important!  I wouldn't know what to do without my friends.  They have become my family and I'm so grateful for them.

I have no advice but I want you to know in thinking and praying for you and your mom. Hugs and prayers and love are sent to you both.

Hugs to you Swampwitch.

Adding in my as well.

What a horrible situation to be in.

Di and Bob said:

 
I worked in a nursing home for years and have seen almost all the ways people can die. I don't know the purpose your brother has in keeping her alive, is he getting state money somehow? And that is exactly what he is doing, keeping her alive when she should be allowed to die with dignity. I've seen it many times and never was able to understand the reasoning behind it. Usually they can be kept comfortable on morphine, provided by Hospice, until they can go peacefully. If she is at the point of bedsores, UtI's and next will come respiratory distress and pneumonia, she should be under hospice care and allowed to go. Did she sign a DNR or have any kind of written instructions for end of life care? From talking with many people who have been on the 'other side' and have come back, I've found that the body often takes steps to 'numb' the mind and any pain and they are kind of floating in a sea of nothingness. They have told me they can hear what's going on and are aware, but cannot communicate, and really don't want to. Most of them WANT to go, and beg to do so. I feel fro you, it must be a personal hell to go through all this, I hope everything gets better for you. Good luck.

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This is very helpful to me, and your insight in particular. What you say about where my mother's mind is rings very true to me - thank you! 

My brother is keeping our mother alive while he tries to get control of her property, using his son. He recently signed a living will so nobody can do to him what he's doing to our mother. (She's already survived a bout of pneumonia, too, in January, when we didn't know where she was, I had forgotten about that.)

About the DNR... my mother had one at each of the two hospitals in the area she lived, but of course not at the new hospital after she was kidnapped. A major problem is our parents made all 4 children medical POAs (don't EVER do this it is a nightmare!). It's kind of complicated why they did this.* There are 3 children left, so it's always my sister and I against our brother. (Did I mention he is a heavy drinker, and was a cocaine addict for 15 years - might still be, who knows, certainly his brain does not work well.)

We've had conference calls with so many people (doctors, care workers, attorneys, judges), and the three of us can never agree as you might imagine, my sister and I are always on the same page, and our brother always is not. Everyone is ALWAYS astounded that he will NEVER agree to anything reasonable. Our mother would not want to live like this, but since there is no DNR, doctors err on the side of life. There's nothing my sister and I can do.

*Our parents had to tiptoe around their son the last 3 decades, afraid they would upset him and drive him back to cocaine and other drugs. So they named all 4 kids as medical POA because they did not want to leave him out, they were thinking the 3 other children would be able to keep the one crazy child in check. IT DIDN'T WORK.

It's so strange, I've got a brother that sounds a lot like that, my parents tip toe around him too. He's never kept a job, and 'works' for himself. He's been to their house and threatened to kill them for his terrible childhood, which is strange because he lived with three other siblings and none of US remember any kind of abuse, the minds a terrible thing to waste with drugs! I guess every families got one! I just totally ignore him, which is hard to do sometimes, and my husband wants to knock him on his you know what for the way he treats my parents and us. So don't feel alone, hopefully someday they will get whats coming to them!

Di and Bob said:

 
It's so strange, I've got a brother that sounds a lot like that, my parents tip toe around him too. He's never kept a job, and 'works' for himself. He's been to their house and threatened to kill them for his terrible childhood, which is strange because he lived with three other siblings and none of US remember any kind of abuse, the minds a terrible thing to waste with drugs! I guess every families got one! I just totally ignore him, which is hard to do sometimes, and my husband wants to knock him on his you know what for the way he treats my parents and us. So don't feel alone, hopefully someday they will get whats coming to them!

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I've heard there's usually one kid like our brothers when you have four or more children, and it looks like that's pretty true! It's usually the child that lives close by to the parents and feels more entitled. That's what our attorneys said they have experienced, anyway.

My brother does not have a job, either, he has his own "company." He's a spendthrift, and is in debt. He told everyone, after he kidnapped our mother, that my sister and I had tried to kill her!

He's a con man snakeoil salesman, and can be very charming and convincing, but beware. His family motto is "It's  not illegal if you don't get caught."

Every family has got one, don't they?  I have a brother that's still alive (I think) that claimed me and my sister are lying about our childhood.  He's the only sibling that talks to my parents still.  I think my sister did the same as I did in the end, and that was to remove herself from the madness and live life on her own.  The oldest brother took his own life.

Di, you bring up an excellent point.  The DNR/POA/etc stuff can get sooooo messy. 

Swampwitch, keep us updated and feel free to talk.

My thoughts are with you swampwitch.

I'm so sorry. It's a horrid situation for all of you to be in. 

Update: this is pretty harsh - could be very upsetting - so please stop reading now if you don't want to hear more horribleness. 

My mother turned 89 this month. She had another episode last week and was found cold and clammy with shallow breathing. The doctor called us and said he needs to either call 911 or put her on hospice care. While he was talking to us, we heard her screaming in the background.

We said please hospice care, please so she can have full pain meds! We filled out all the forms and sent them back, but then our brother showed up and cancelled hospice again. The caretakers called us saying they were going to have a phone meeting with him to try to convince him hospice is the right thing. He didn't pick up but they kept calling and finally he did, of course despite all their pleas and rational arguments, he refused.

Her caretakers are very distraught; the doctor can not easily get the narcotics used for the dying - those drugs are easily available to hospice, though. He also does not know how to treat her - as a doctor he focuses on getting people better and he keeps saying he is not the one who should be handling her care right now. But we are all stuck because of my brother.

So, for a week, she has been suffering more than ever, and is in a lot of pain. Her skin is breaking down and she is scratching so hard she is creating sores. My sister and I are working with all the nurses and doctors who are trying to help. The idea of bringing her to this area, away from our brother, is an option that would cost about $40K (round trip - she already has a place to buried by my father) but we have a fiduciary duty, too.

The newest development is our brother told hospice he wants to move our mother again, THEN he will put her on hospice. The problem with this is he always lies and tells the facility when he checks her in, that he is the sole POA and will make all the decisions. Once that is in the system, it is a huge mess to get everything right again, and the new caretakers won't even TALK to my sister and I until it's corrected. We have had to do this every time he has moved her, and it takes weeks. Also, he lies - it was just to placate the hospice workers pleading on our mother's behalf. 

Sometimes when I feel bad that our daughter is an only child, I think of my brother and feel it's really okay.

Geez Swampwitch, I'm so sorry.  And just to help ease some of your guilt about not bringing her to your area:  your brother will find a way to move her regardless of distance. 

I understand that some people are going to disagree with me and that's OK, but I'm wondering if it's time to push the legal matter of your brother and nephew providing false papers?  Yes, it may involve both of them going to jail.  But fear should not allow them to torture another human being, and it sure sounds as if this is torturing her. 

Or, another point that some may disagree with me on and that's also OK, it may be time to wash your hands of it.  From what you're saying about her physical condition, she's not going to live long (infection).  Considering that your brother may play games with you and your sister by moving mom every single time you get her better, I wonder if that isn't prolonging things.  I'm not wishing your mother a cruel death, please do not think that, it's just that it appears that your brother is going to pull tricks regardless and finality is needed.  Your mother doesn't need hm toying with her life/health for next 5-10 years.  I'm sure you and your sister's health is at risk because of this too.

Again I'm so sorry and I'm honestly not trying to hurt your feelings or offend you.  I was raised in an extraordinarily cruel home, but each person's experiences are their own experiences as are their decisions.  I'm hoping that I've just "rationalized" some of the thoughts that are already going on in your head.  Venting is OK too, and I hope I haven't taken away from that.

  I'm so sorry you are all going through this. 

Does your brother have control of her finances? If so, maybe call the banks fraud departments and maybe they would be willing to freeze/block accounts. Even with a POA depending on the area, certain places have strict elder abuse/vulnerable person abuse reporting laws. Just a thought..

peaches08 said:

 
Geez Swampwitch, I'm so sorry.  And just to help ease some of your guilt about not bringing her to your area:  your brother will find a way to move her regardless of distance. 

I understand that some people are going to disagree with me and that's OK, but I'm wondering if it's time to push the legal matter of your brother and nephew providing false papers?  Yes, it may involve both of them going to jail.  But fear should not allow them to torture another human being, and it sure sounds as if this is torturing her. 

Or, another point that some may disagree with me on and that's also OK, it may be time to wash your hands of it.  From what you're saying about her physical condition, she's not going to live long (infection).  Considering that your brother may play games with you and your sister by moving mom every single time you get her better, I wonder if that isn't prolonging things.  I'm not wishing your mother a cruel death, please do not think that, it's just that it appears that your brother is going to pull tricks regardless and finality is needed.  Your mother doesn't need hm toying with her life/health for next 5-10 years.  I'm sure you and your sister's health is at risk because of this too.

Again I'm so sorry and I'm honestly not trying to hurt your feelings or offend you.  I was raised in an extraordinarily cruel home, but each person's experiences are their own experiences as are their decisions.  I'm hoping that I've just "rationalized" some of the thoughts that are already going on in your head.  Venting is OK too, and I hope I haven't taken away from that.

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Thanks, Peaches. Your comments never hurt or offend me. 

Ugh we have explored the legal aspects of all of this over and over with our attorneys. The main problem is every lawsuit has a high cost, not just money although it's incredibly expensive, but my sister and I have to leave our lives and families to travel and stay there. The worst part is, it will not deter our brother and his son - they won't got to jail for it and they will continue the lies anyway.

I keep hoping he gets put in jail for DUI, which he does all the time.

We have no doubt there will be a lawsuit in the end - initiated by our brother - but hopefully it will be over quickly and that will be the last of it. We have been preparing for his lawsuit for almost 5 years. My brother is always angry and nothing is ever right so we his family all know that he will lash out in the end. He has holes in his brain from decades of drug abuse and he doesn't think rationally or clearly. It's made worse since he's mean and greedy.

MoochNNoodles said:

 

  I'm so sorry you are all going through this. 

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Your kind words are always appreciated. 

Asherdash said:

Does your brother have control of her finances? If so, maybe call the banks fraud departments and maybe they would be willing to freeze/block accounts. Even with a POA depending on the area, certain places have strict elder abuse/vulnerable person abuse reporting laws. Just a thought..

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That's a good thought, but fortunately, my mother's finances are controlled by my sister and myself. Our oldest sister made sure he had NO control or access before she passed away, and this was supported by our parents' wills and POAs that did not give him any power at all. Everyone knew he would be trouble, but we didn't anticipate something like this. When our father passed away almost 5 years ago, our brother did some really dirty dealings trying to get his hands on our parents' property. I have emails from him with his plans to take everything our parents worked for all their lives, and leave our mother penniless and on Medicaide.

Technically, it's not abuse what he is doing. It should be but it's a real grey area, and legally you can't fault someone for trying to keep their mother alive.

Whether you've replied or not, thanks to everyone with kind thoughts directed this way.