Ok so...were to begin. well. we live in New Jersey, My mother is over 70, and she has symptoms of some kind of personally disorder. Her entire life she has been a very negative person who stole money from me, her sister, her husband and my cousin, feeling entitled to our earnings, downplays her poor actions and seems to write off any of our concerns as over reactions or being sensitive.She was always very judgmental and racist of people. Shes always been hard to live with but we did ok. Then... my father got prostate cancer and I was left alone with her when he was in the hospital. Now here's the thing....she had memory problems and health problems for a while but every doctor appointment we made, every attempt to get her seen, well, she'd cancel or get hostile. With my father gone, I could see her health had declined rapidly. She was not breathing well, has NOT bathed for who knows how long, and stopped taking her medication (shes diabetic and has high blood pressure). my attempts to get her to a hospital resulted in her getting violent and very disconcerting threats to kill me. mind you I am 30 years old with Aspergers syndrome so this...this was traumatizing. She burned my arm with one of her cigarettes I called the ambulence and police. but after arguing with the police and medical staff they could not take her. They said they couldn't go agaist her will. This went on for weeks till my dad got home. Her health continued to decline but still nothing to be done.

We finally was able to get her in to the emegery room after a month of fighting and my father regained enough strangth. She is in kidney failure and is going to need dialysis three times a week. since shes been admitted to the hospital, it has been nothing but torment. when we are away, she floods our phones begging and crying "I WANNA GO HOME" We visit her, she's picked off her wristband and taken off her gown, shoes on and following my father around screaming for him to take her home. He cant even talk to the nurse, he had to get security to take her away and sedate her. She refuses to take her pills still. we tell her she'll die and its just met with more screaming of "I DONT CARE I WANT MY CIGARETTES I WANTTA GO HOME, I WANNA SEE MY DOG" again, we tell her that her lungs are filling up with fluid "GOOD. I DONT CARE. TAKE ME HOME OR IM WALKING OUT" she has been declaired mentally incompetent. all the choices fall on us. Her primary doctor says she has holes in her brain but with how much she's fighting we can't get her tested for alzheimer's but.... its pretty clear she has some form of dementia on top of the personality disorder. Medical transport to and from th dialysis clinic will be will be impossible for us long term. I dont have a car, I can't afford one. I've been trying to pay off my student debts and working a low paying job while also doing freelance work. I walk or bus everywhere. I've been trying to find a second job for awhile but I have yet to get a callback. My father has a car but it is in bad shape and needs repair. the 'home' she wants to go back too needs so much work as it smells of waste and urine, infested with rats and has an insect problem. Medical transport? She will refuse to get on it. She will refuse to take her medications. She will fight us tooth and nail and neither of us want to be the subject of her wrath on a daily basis as we fight her to do basic things she clearly does not want to do. She stinks so badly and even if shes been declared incompetent she's made it clear she wants to be left to die. Medical staff aren't giving us much choice though, the nurse don't want to talk to us about putting her away, that WE MUST SAVE HER. YOU MUST DO THIS. that the fluid in her lungs is why she is horrible.

But here's the thing.... She is not happy. She is done with life. she torments the only two people who have stuck by her this long. We are struggling with finances. We take her home she'll just sit and continue to smoke 4 packs a day while screaming and hitting us if she doesn't get what she wants. So heres my question....What are we able to do? CAN we take her home and just let her live her last days as she wants, not bothering with the dialysis? or are we looking at legal ramifications for doing this? I wouldn't know how to search this up on new jersey law. i feel so lost. There is no help. My father has lost so much weight, he should be resting as he supposed to still be recovering. I fear they will eventually tell her to go home and we do not have the capacity nor willpower to care for her. she has a sister who wants us to do what we can to save her but at the same time she wants nothing to do with her care. we just want to let my mother go.she was too stubborn to do a living will but.... we know she wants to just go.

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thank you all. really.
my father has spoken with a social worker at the hospital and they will send her to a careone facility after she is done. He is going to give them her social though she does not get that much a month. they ....cant turn her away right?? she does better when we arnt there, on her best days she'd still be difficult since she never liked being told what to do. like. shes only supposed to have one cup of coffee but she somehow got a second cup when the aids werent watching her. I was not present with my dad so i have no idea what he talked about with the social worker. Hes 74 i dunno how well i can trust his judgment eaither. my cruddy communication skills wouldn't be much better, people talk so fast. but I told him to ask if its possible her mental health can be looked into. she spoke with the hospital physicist who was the one who determined her to be incompetent. We had made attempts with physicists in the past. around 7 different ones thoughout the years, none could pinpoint what was wrong with her.

it has been very quiet since she was gone.
have rat traps and poison put out for the time being. I sprayed around the kitchen to keep the ants at bay. I know we will need professionals eventually but they are out of budget for now. managed to get the fridge cleaned though. I was tasked to do a drawer which was caked in sticky gunk, It took a good two hours. there was so much moldy food, a packet of sausages was growing hair. my dad is going to get the dog groomed today (the dog uh...she needs alot of work. poor thing)

I am still scared of when the bills are going to start showing up in the mail. I tell my dad not to be spending alot of money but??? there really isnt much to cut back on. not if he want to fix up the place. Im willing to help were i can though.

Long term care from what i read online is going to be incredibly expensive. My father and aunt want to avoid hospice. are ...we going to be looking at bankruptcy? what am i even to do when my father's heath starts to fail and the moneys been spent on my mother? he had made me POA some time ago.i can barly keep track of my own bills i dont know if id be able to keep track of his stuff let alone pay for it.

I would like to go back to school, maybe get into a better paying field of work or become self employed. id like to own a car so i dont have to rely on public transport or ubers. it just kinda feels like a pipe dream at this point. hell i thought id be married by now.
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I think she needs someone who understands her. Maybe I could help. Maybe I could talk to her.
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No one deserves to be abused, if it’s from your mother. I hope you’ll be able to make a plan with your dad for him to not let her come home from the hospital, he’ll have to state that her care is beyond what he’s able to provide which is completely true, and the hospital social worker will find an appropriate place for her to go. Be sure to tell the social worker exactly what you’ve explained here, important especially if mom is putting on a show of good behavior at the hospital that doesn’t last when it’s just you and dad. Then you’ll need to work on cleaning up the living environment for you and dad at home and making it a safe and healthy place for you to live so he can recover properly and you both can live in peace. I’m sorry it’s come to this with your mom, but letting her come back home will only continue the cycle you’ve been seeing. Making a change will benefit all of you, her included.
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Hi Chasen,
I was so inspired reading your description of what you have and are doing with your life, dispite Asperger's.(spelling?)
A Long term care facility seems like the most beneficial route for everyone. However, I doubt she will go for it. She seems just done with her life and has little * hope* to carry her through. Plus, no cigs! Forget about it!

Honestly Chasen, if this were me, (and it kinda is, but Mom takes her meds) I'd take her home and let her pass, naturally. Hospice would be a wonderful benefit for her AND you guys. If she'd let it happen.

There are more hospice providers then just the rep your Dad talked to at the hospital. Maybe try another one, independent from the hospital.

I'm going through the same thing with my Mom and the cigs. Also, the crying to come home when I visit her. She's now in the hospital for her second stroke in under two weeks! But wants those smokes!

I came to the conclusion, that if she wants to shorten her life span and enjoy her be it. It really IS their choice.

Bless you and your family. Keep updating here, you are NOT alone.
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The history we have is complicated, isn't it. There are all kinds of longstanding, recent and immediate issues in it.

A woman over 70 has a child of 30. The child has Asperger's Syndrome and is still living with his/her parents.

The woman is diabetic and has high blood pressure. In high summer, with her husband in hospital (see below), she has been skipping her medication and neglecting herself. Her breathing is poor. Her mental state has been questionable for a while but she resists investigation.

Also in the household is the father. The father has recently undergone hospital treatment for prostate cancer. Whichever way you slice it, this must have been a huge disruption for everyone. Father out of the house, frightening disease, possibly debilitating treatment, possibly ongoing, certainly not out of the woods yet.

The home is a problem. There are pest control issues that will need to be addressed.
Money is a problem.
Transport is a problem.

This is a whole family in distress.

Chansen, I realise that what you've been through, recently and over the years, is incredibly hard. I appreciate that you won't be in the mood, really, to hear any sympathy for your mother.

But just on this point. Kidney failure doesn't happen overnight. Over the last few months, your mother's kidney function will have been deteriorating; and the point about that is that poor kidney function makes people feel *terrible*. So while you've been wondering why your mother wouldn't get her act together and be more positive and help everyone to help her - she couldn't. She felt like death warmed up. The practical things you wanted her to do to help herself were beyond her. All she wanted, and wants, to do is sit with her dog and smoke her cigarettes. You can blame her, if you like, for not wanting to pull herself together - but where does that get you? You're no further forward.

So here you are at a point where your mother appears to have lost all hope, and you and your father have a dilemma about what you can and should do to prevent her from dying, given that she does appear to have a death wish.

First of all: this is down to your father. Not you. You're entitled to an opinion, sure; but don't voice it to your Dad unless you're pretty certain it helps him.

Next: take heart. This may seem like a hopeless, tangled downward spiral of medical, mental health, behavioural and practical problems you're facing; but the thing about that is to untangle them and cross them off the list one by one. Your mother's despair may well be the result of her being overwhelmed by myriad small troubles that led her into bigger ones. At least she's now come to the attention of the sorts of people who can help. You just have to wait and see.

And meanwhile, what about you? Where's your future headed?
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Request that she be transferred to a psychiatric hospital to be evaluated for dementia and to find a medication combo that will help to level out her behaviors. You can refuse to take her home saying her care is more than you are able to provide.

Has she been checked for a urinary tract infection?
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As I was reading your post I was thinking to myself, "I wonder if she behaves like that only when her family is around?" You answered my question. Elderly people who are difficult with multiple health issues, a personality disorder, dementia, and maybe mental illness are often somewhat better behaved around people who are not family, who are not close to them.

If she has to have dialysis and your family makes the decision to bring her home instead where she has no access to dialysis why then would she not be a candidate for hospice?

Have you considered placing her in a long term care facility? From what you posted she sounds out of control, more than you or your dad can handle. There are social workers at the hospital who can help you get that ball rolling.

I'm sorry that you and your dad are having such a difficult time. I'm glad you found us.
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I don't think that you and your father can take care of your mother. Dealing with a personality disorder plus dementia is not a do-it-yourself undertaking. Even professionals with years of experience and specific training will have difficulty with this situation. For you to take it upon yourselves is bad for everyone concerned. Leave it to the professionals.

Just because she is judged incompetent, that doesn't mean you'll be able to force her to take her pills or go to dialysis or take baths. Even if you or dad became her guardian, and therefore had authority over her care, I don't know how you would actually do it. So, fine, you could legally insist she take her meds. But physically, how would you do that?

I think that Dad should refuse to have her come home, on the grounds that he is not able to provide suitable care for her. (Which certainly is the truth!) She can't stay in the hospital forever but she needs to be discharged to somewhere that can provide care. (A behavioral health hospital or unit?)

If the house that smells of waste and urine, is infested with rats, and has an insect problem where your father is currently living? What are the plans for improving that, assuming your mother is placed in care?
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((am i allowed to reply here? sorry still new, not sure if i can edit my posts)) thank you for your insight. my father got to talking with different people at the hospital about they said not yet. the person he talked to was confident she will not need it yet.

She's far less aggressive when her family isn't around which, to be honest, was news to me. she did the dialysis without a fuss. but as soon as she saw my father she started to pack up while screaming at him. I dont...i dont get why?

but im relieved shes not suffering I...think.
Guess we would do better looking into a care facility?
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jeannegibbs Jun 2018
Yes, this is the appropriate place to respond to other posters or to add information, chansen.
I'm going to suggest you ask for a consultation with a hospice provider, they should be able to evaluate your mother's needs and if she qualifies as to her ability to refuse dialysis.
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