Dealing with someone that does not want to help themselves.

Unamused_By_All

Hi, 

First time to the forums, I have a complicated situation with my mother she has undiagnosed dementia, and she refuses to get the help she needs due to fear of being alone and general free of doctors and hospitals.

To make matters worse back in Aug of last year my mother suffered from a bilateral cerebellar infarction and was in the hospital for fives days, the problem is due to COVID I was unable to stay so my mother was stuck alone in a place that housed all of her fears and unfortunately she has never been the same since in terms of behavior of wanting to home. 

I do understand that generally this is normal behavior, and I am certain this is unimaginably difficult for neurotypical individuals, but I am having a hard time coping with and managing the repeated behavior since that happens to be one of my triggers I was never able to overcome with ABA, I have ASD so unfortunately much of the attention seeking behavior she is showing is something I have no baseline in dealing with since even as a child I never acted, or cried or when I wanted something I generally was still as a rock. 

My mother is all over the place, and if you fail to play into her narrative she gets angry yells, tell me she hates me, wants to kill me, wants to kill herself, harm my father etc . . . Which I have been told is not uncommon when someone is frustrated, and is unable to express themselves. Unfortunately, I do not have much experience with that either and cannot play off my own personal behavior since I never acted like that either. 

Generally as it stands it has gotten worse, if I leave for work or just to have a date night with my wife (Whom my mother hates) my mom wanders around without telling my father or even if she does tell my father he is unable to move well or quickly so he just lets her go. He is tired of this himself. Cause the reality as he puts it my mother wants to be around me at all times. She has even told my father that the reason she does not give me power of authority is because she has no desire to give up her personal autonomy, which is also why she refuses to go to the doctors. Granted, even if I had POA, I still cannot force her to go to the doctor if she refuses to so it largely irrelevant in terms of getting her a diagnosis so I can get her the help she needs. 

What just amazes me that the fact I had to place three missing persons reports in for my mother when she wanders, but because she found her way home each time that is still not enough for force an evaluation. Sure I am not libel if she harms herself cause I have taken the steps necessary but as the police, EMS, and doctors at the behavior facility told me that is potentially a different story with regards to her hurting someone else during her wandering spells or my father. Though by in large most people say that is probably not possible since whenever she is around doctors and other authorities she is on her best behavior, she suffers from sweet old lady syndrome.

I cannot even get a preliminary diagnoses cause she is able to pass the basic questions her memory has not gotten to that point unless she is visibly stressed. Though unfortunately she does not show her stressed state in front of those that matter. I have recorded her behavior, still not enough cause that cannot get a diagnosis based off that which I get.

The problem is as everyone who has dealt with her generally the common factor that leads to all of these outbursts and problems stems from me personally not being home and paying attention to her. I have tried the home health aid route but my mother is an unapologetic bigot. So you can imagine how they last and I do not blame them, even when she had an aid with her she would call every 15 to 20 minutes and if I ignored her she become even more difficult for my father and the aid. Though she is smart, cause she knows to never physically touch my father or the aid. 

I have been told I have to wait until it gets worse, but here is the thing this has already negatively impacted my marriage I cannot even live in my own house with my wife cause my wife cannot stand to watch how she treats me calling me an *$%& when I tell her no to going out for a walk cause I am busy with work or hold on. Calling me horrible things because I tell her the truth that she has no other home, her sisters want nothing to do with you. I have tried to send her back home but her family wants nothing to do with my mom. My father does what he can but he can barely move so not like he can do much of anything.

My mother has called me a mistake and wishes I would die because I defend my wife when she refers to her as “the girl” or makes a racist comment about her. 

I do understand the logic behind blame the sickness and not the person, the problem is my mother was not a good person before she got sick, and the sickness has done was made it so she no longer tries to hide it with family. In short I want to leave, it is not like I had any degree of empathy towards my mother she has never really done right by me though I do have a degree of compassion by proxy for her because of my father. I do not wish to see him suffer, and if I do vanish—which is the advice my lawyer gave me, just leave she is not worth it— that leaves my father to carry the bill so to speak and that is unfair to him because I am not even his son biologically she had an affair yet he stuck around for my sake and hers because he loves the both of us deeply. He deserves better, that is why I stay, I will never understand why he choose to stay with someone that lied to him.

I do not know how to deal with any of this. I hate her guts I wake up wishing when I go to give her breakfast she is no longer breathing. I have thought about flying her back home and leaving her at the airport and never answer my phone. I have even gone as far as having thoughts about killing her myself. Cause the sick reality is she is the embodiment of every human behavior that triggers me and yes the lack of the control and understanding of the situation also throws me for a loop. Cause I could deal with everything, even my father could if she just did not have this deep seeded desire to go back home to a place that never existed in the first place. Even the time line does not match up, because she claims she is 54–really 69– but she still think my grandparents and still alive when in reality they died when 6 years prior. So let us say her memory goes back to when she was 54, that is fine why does she think her parents are still alive, and the kicker is why does she even care her father molested her many times and no one did anything and her mother abused her because her husband only had eyes for my mother. She never spoke a kind word in regards to them. Though now when she speaks of them with such magnanimity as if she forgave them or wishes to forgive them, Which makes this even harder cause in the past I have tried to get her to seek closure but she refused to when they were still alive, now years after they have passed she wants to which is impossible. 

I feel manipulated across the board because everyone else around me honestly has checked out, yet just because I am her son and the only one of her children that she did not abandon so I do not know because of that I sick around out of a sense of duty or obligation, Just I know this is going to destroy me, and I want to do right by her and especially my father by getting her the care she needs, but the reality is our bureaucratic system is preventing me from getting her the help she needs. 

I have called adult protective services, the reality is she has the right to not want to seek treatment, and since she has never acted out in front of the right people. I mean I have gotten her to go one cognitive test after her stroke, and only deficiency she showed was in working memory, everything else was more or less normal for someone of her age and of someone who has recently had a stroke. They had some suspension based off what I told them but given the recent stroke they did not feel fair to give even a preliminary diagnosis given that they only could go based off her observed behavior at the time. They did state to come back at a later date for a follow up and I explained I doubt I will be able to do that since it is difficult and near impossible to bring her to outpatient facilities. I had to explain the only reason I got her to the asymptotic stroke was because I begged the EMT to take her just to get evaluated. Once my mother is in the hospital as in forced to be brought by some authoritative figure that is not a doctor she will put on a show because she cares deeply about appearances and wanting to be liked by strangers so she will do as she is told. Though for me to just drive her in impossible cause even when I got her to the neurologist and asked them to kindly just focus on the knee and try to work around that without bringing to much focus on the neurological side she picks up on it because she has been going to neurologists with me since I was around 3. 

Sorry for venting, I have nothing else I feel like I go do all power has been stripped from me and I get my life is for my mother until she gets to the point where I can manipulate her, like she is manipulating me into staying in her life. Though I do not know if my own sanity or happiness will last. I can barely work my boss has already told me that if I have another issue that requires me to leave early especially when I have projects to work on they would have to let me go. Problem is she only gets difficult to handle when I am not around. As she told my wife when they had a fight. He may choose you, but I can easily make it so you do not choose him. The sad thing is she is close to doing that, and I do not blame my wife why should she be forced to deal with such a human being. 

John2.0.1

It's not clear if you and your wife live with your mom and dad or if you have your own place. If you do, I say get out of the situation at least for a period of time. If you don't then get your own place and get out of the situation.

Unamused_By_All

Sorry, forgot to mention that. We did try to take a break for go on a mini vacation so to speak but within 24 hours of being gone I had my father call me telling me my mother was left while he was taking a nap. So I had to fly back and deal with that mess. Though my wife has been away from the situation for about two months now. I am staying with my mother and father at their old apartment, since that was the only way my father agreed to take her back in is if I came back with her. 

More or less after her stroke my mother was staying with my wife and I, but it got far too complicated and heated so my wife understandably mentioned she could no longer deal with her. My mom refused to get a place of her own, and not like I could kick her out on the streets, trust me I thought about but she is like a lost puppy she will find her way back home and from the outside in I will be seen as the monster, granted I get it. So for a time I had her stay with my dad, but my dad kind of just lets her do what she wants then just calls me when she wanders off. So that did not work cause it was our vacation all over again. 

So now I am staying with them in their apartment, I barely sleep cause I have to sleep in the living room near the door or else she would try to escape. Yet sadly none of this behavior is just not enough to force her to get the tests she needs so I can get her into a memory care facility. It has gotten to the point where I am about to put her in a private facility but the cheapest one I found in NY is around 15k a month, would would be nearly 95% of my salary, and I have my own expenses to worry about. 

Sorry even just now my mother just asked me don’t I miss my wife, with a smile on her face. In short every time I try to leave even if it just go out for a run to get some air I come back to my mother not being home. Thankfully most of the time now she has on at the very least one of the four tracking devices I have gotten her. Though it is just a matter of time that she will not have one. Thing that really gets me it seems she has this all played out in her head, she is always able to find her way back home, and she knows that she is home. Yet it seems thinks she has another home, and sometimes she wants to see my wife, but my wife wants nothing to do with her, and or if my wife does see her she wears her emotions on her sleeve and my mom does not do well when people are mad at her it just makes her behavior to want to go home and see her grandparents, or get attention for worse. 

Which I think is part of the reason this has gotten worse because for me, my mom asks me daily am I okay and the moment I say no she bashes the person I love and blames her for me being annoyed with my mom. When she is not wrong that is a factor but not the only factor. It sucks I have to suck it up and smile and say yes mom I am fine, it sucks I have gone through two agencies but because my mother is a unapologetic bigot that does not make it easy. In short I am alone in this because my mother burns every bridge. In hurts cause even my wife of 12 years has told me she does not want to hear anything about my mom, so I cannot even vent about her.

I am only 30 years old we were talking about starting a family, then my mom said whelp the status quo of being home watching TV, and going out every so often is not enough I want 24/7 attention from my son and family.

I get my mom has no one outside of me all her friends hate her, her family hates her, my father hates her, my wife hates her, and even her son that she stayed with hates her. Though for some reason I cannot sake this obligation because I am afraid of how far she will go to get her way.

Quilting brings calm

To be blunt.... regardless of your father saying you had to come with her for him to take her ..... they are married and it is HIS responsibility to deal with her.  HIS responsibility to get her placement.   It doesn’t matter whether or not you are his biological son, HE is HER husband. It is his liability if she wanders off while living with him, not yours.  Sometimes the only way to get placement is to let the crisis happen. Do not let your marriage fail because both your mother and father have manipulated you into being responsible. 

Wait until they are both asleep, grab your necessary items and leave the home.  Either fly home or rent a car one way and drive home. 

Unamused_By_All

Sorry forgot to mention they have been divorced for 15 years now, due to income issues but they still live with one another, and according to my lawyer mainly because they are divorced I am the one that becomes libel for her actions even the police did mention that because I willfully left my mother is such a situation and my father as great as a person he has been to me will throw me under the bus if he meant protecting his own self.

Though yes, that is my desire I am just getting conflicting information though yes my lawyer did mention as before that I should just leave. My wife and I are looking to get a new home together in a different state. Just hard cause a part of me does not want to she them suffer and while I doubt I would shed a tear for my mom if she hurt herself, but if my actions led to someone else getting hurt I do not know how I would feel about that. 

terei

Quilting is right.  LEAVE NOW.   You have become an accomplice to your own misery.    You have tried mightily to help improve your mother’s/father’s situation to no avail.    You are ruining your own life + your marriage.   

Go home.   Tell your father if she walks off, to call the police.   You can do that from your own home also.   DO NOT GO BACK.   If she is agitated enough, your father should call 911 to have her taken to an ER + then to a geri psych unit if called for to be evaluated + medicated if necessary.       Go ahead + call their local county or city social services department to have them visited. Maybe they will have luck helping them.

It is clear you are not helping things by staying.   I honestly would not talk to her by phone or otherwise.    If you feel your father is in danger from her, a call to social services is in order.  You have no leverage to force her to get treatment + your presence in their home is useless.

It is not your responsibility to pay for her care.   Detach yourself from this melodrama, possibly seek therapy, + try to calm yourself + repair your marriage

[Deleted User]

The user and all related content has been deleted.

Unamused_By_All

Yeah the end goal was to leave once we found a new home, was not even going to bother to sell our old home. Since I was willing to make sure they were setup as best as I could, but everyone is saying exactly what my wife has told me just leave. She gets they put up with a lot regarding me with my ASD, childhood cancer etc . . . But that was their obligation as a parent as a child I do not have the same obligation, 

Thank you everyone for the information. Probably end of the day I just wanted validation for leaving my parents to solve this mess. Was never my intent to be the *$%& my mother claims, but it probably is right to just become said *$%& for my own sanity. 

I just wish people were real with me from the start, I put up with a lot because I thought this was far outside her control but even if that is the case she is an adult even if within her current state she acts more like a child emotionally. Thankfully she fairly independent if she chooses to. 

In the end I know it is a lot but I do not wish for my parents to suffer, and I want them to be happy. I just cannot let their happiness come at my own expense. I have told my mom in the past that if it ever really came down to you or my wife, I will pick my wife. I was trying to do it the right way to make sure she was setup, but after today when I had to call 911 and the EMS to take her in mentioning she wants to kill my father and herself because we refused to let to walk in the rain to a place that does not exist, and for the people that evaluated her to let her go within an hour. 

That was the last straw, sorry for my language f--- her and f--- the system. If she hurts someone that is solely on her, I tried to get her help before that possibility happened. I just hope that if it does come down to that no one is hurt badly, though even if that is the case I cannot live my life around a possible worst case scenario. 

dayn2nite2

You want to stay married?  Leave them to their own devices.  Abandon ship.  Concentrate on your wife and your home.  Call APS after leaving.  Save yourself.

Iris L.

You have "ASD", I don't know what that is.

It is unclear to me if this is dementia or a pre-existing psychiatric disorder.  Is she capable of handling her own financial affairs, such as bill paying and making purchases, grocery shopping, etc?  Loss of these abilities usually occurs early in dementia, and often occurs before significant memory loss.

I am not making a diagnosis, but I suggest you read about borderline personality disorder and discuss this with the therapeutic professional that you consult.

Also, look into the group "Adult Children of Alcoholics and other Dysfunctional Families."  They may help you.  There was a book written several years ago with that title.  

Iris L.

Unamused_By_All

ASD stands for Autism  Spectrum Disorder. Though I wish that was the case, in terms of finances if auto pay was not a thing no, as a kid I do remember my parents having many fights because my mother was poor with money. In terms of shopping it is not so bad cause she will either use my credit card, or her debt card. So in terms of counting of keeping track of money when she goes to the store it is not bad either. I have gotten by more or less downsizing my mom to as few items as possible to avoid confusion. 

She was showing signs before her stroke, decline in ability to drive, forgetting she ate after eating, forgetting who my father was, not remembering my name referring to many things like as thing instead of identifying them. Many doctors state she has signs of dementia, but unfortunately given the stroke and her history baseline my mom has what is called functional illiteracy. So unfortunately given her already lower then normal baseline many doctors passed off what she was experiencing as normal decline for someone of her baseline. 

Her behavior is more so based around the fact she has lived a life abandoning and running away when things get hard. I have many half brothers and sisters, and she left them all to avoid abusive husbands. She tends to put herself first before anyone else, only problem was given the fact I am on the spectrum and had a bought with childhood cancer it made it harder for her to just pack up and leave especially given her late age she had me in life so she stuck around though as she has told my father many times she wish she just left me that is neither here nor there though.

One theory a few doctors had was prior to the stroke she was early onset or early stage, but it is not that it did not go unnoticed, I noticed and spoke with her doctors about it about unfortunately only so much me talking about it can do. The signs were present soonish after my grandparents passed. It is possible that the stroke just tipped her over the edge. Like the doctors told me after her evaluation since I had EMS take her because she said she wanted to kill herself. She is showing signs, but sadly they cannot do anything I have to take her to an outpatient. Though once I explained she will not go, and I cannot force her to go. 

The scary reality is she lived through manipulation tactics before getting sick, and all getting sick has done is made it worse. I tried to not take it personally but it is hard. I get she feels betrayed because as she always said I was her investment, I was supposed to care for her in her old age. I tried, but the system is making me jump through far too many hoops because she refuses care, so yeah. If she really wants to think I failed her then fine. I am not disregarding possibility of other issues but Dementia runs in my family especially on the female side my grandmother and great grandmother both suffered from it. 

My end goal was to try and put her in memory care so she can try to live in peace, but the system and her are making that rather difficult. In truth maybe I could deal with some of the issues but the repeated asking to go home, or bringing up my grand parents  and wanting to see them or her family is just far too annoying for me to handle on a daily bases. I can deal with once or twice a day, but sometimes it is on a 2 min cycle. I do truly believe if she just came to terms with the fact that she was a genuine piece of sh-- of a person that burned bridges across the board—granted she had a rough childhood—and has no friends or family outside of myself that are—were—willing to help her and that what she has now is not that bad. 

As others have pointed out she is not really my obligation, I get she put in a lot of work to raise and care for me with all my health issues but she is not my obligation and I do appreciate the validation. I know it is petty of me, because I know how fake my family is even though they hate her if anything did happen to her because I was not around they would blame me, because it is expected for the child to take care of the parent. 

harshedbuzz

Unamused-

That is quite a knotted situation. 

I am the parent of an adult son with what was formerly known as Asperger's Syndrome, so my perspective on this is a little different than some of the others here. 

Some thoughts-

1. As a person with HFA, I can see where it would be especially hard for you to avoid being sucked into this vortex of chaos. The best qualities often associated with this difference- a deep sense of loyalty, right and wrong and most likely a connection with the person who was your sherpa when you were little and confused by things- leaves you vulnerable to wanting to right a situation even when it isn't possible.

2. Like a lot of us, you will be especially frustrated by the barriers to care that exist to protect the agency of someone who is not currently capable of making sound decisions. Often in the earlier stages of the disease, assuming Alzheimer's, you might see personality changes, a complete lack of social filter and marked deficits in reasoning and executive function skills- memory loss comes later and generally impacts working and short term before long term memory. She may have to progress further before you would be able to successfully advocate for an evaluation through the courts. 

3. It sounds like she is very capable of "showtiming" a behavior where the PWD can hold it together long enough to fool even professionals. This can be frustrating for family. Dad used to put on a show for his geriatric psychiatrist making jokes in Yiddish of all things. Dad's an Irish Catholic so it was something of a surprise. Like you, I recorded dad with my phone to share the "real deal" with the doctor to ensure appropriate medication management. 

4. Finding professional caregivers for an unfiltered bigot has been hinted at here before. They generally refer to it as "finding someone who looks like their LO". Ugh. If this is necessary, you can hire via care.com which includes profile pictures. I was fortunate that dad wasn't racist, but he was quick to comment on weight, bust size and looks which was just uncool. 

5. A diagnosis would be ideal, but mostly to rule out other conditions that mimic dementia but are treatable. While there are medications for Alzheimer's they are of no benefit to many who try them and cause significant side effects for others. Even for those people who see a benefit, it is only in observable symptoms- they do nothing to slow the disease's relentless progression or prolong life. 

6. I wonder if your mom has some underlying mental health issues herself. Family members of people on spectrum are much more at risk than the general public- especially around ASD, schizophrenia and bipolar disorder. If you can arrange an evaluation, a consult with a geripsych could be life changing. My dad's family has a history of mental health issues- especially bipolar, possible borderline and lots of addiction. His geripsych agreed with my hunch that dad likely had untreated bipolar (my husband would say he's more of a sociopath) all his life and dad did do much better on the appropriate medications. 

7. I think your attorney and Victoria gave you some very sound advice. Please take it. Make a life with your wife. Let dad be the adult in charge if he lives there. It might make sense to get a burner phone with an outgoing message to sooth mom and let it go to voicemail to be returned once daily. Same with dad, don't take his calls but return them on your own good time. 

Good luck.

HB

windyshores

I have also been sucked in to caring for an abusive parent and understand your feelings. I tend to operate based on duty and "the right thing to do" but have gotten so much wonderful advice from support groups and social workers to try to make myself, and my own family, the priority.

I don't know what the financial situation is so cannot recommend assisted living or memory care without that info. 

I would speak to your mother's primary care (you can communicate with the MD even without permission from parents, but the MD cannot respond). Write the PCP that your mother needs to go to a geriatric psychiatric facility. That is covered by insurance with an MD order. It seems your mother has a combination of issues, dementia, psychiatric diagnosis of some sort, and also post-stroke and post-COVID. The situation needs the kind of intense attention that a geriatric psychiatric facility can offer.

In the letter mention the things you have described here, the wandering, and the lack of effective response from EMS and medical folks.

 f the MD does not do this, and something happens, the MD is liable, not you. Keep a copy of your letter. You have done all you can.  Then MOVE, get out of there, go back to your wife, and distance yourself.

As long as you are there, it is possible the system will not respond sufficiently.

One other thing: things often get easier when dementia gets worse. At some point, maybe now, your dad needs P of A and medical proxy and maybe you too.

Stacel67

My mother wont help herself. She did go to the dr for a checkup and they sprung a cognitive test on her after I reported to them her recent issues. She was then diagnosed and prescribed medication that she refuses to take. My mother has never been one to take responsibility for herself so nothing new there!

Much of what you have said about your mom I felt at one point in my life. I had to do alot of inside work to deal with my own emotional pain over the years of abuse I received from her. 

I think the lawyer provided excellent advice as did others. I had a consultation with an elder law attorney today and he advised me to do what I could to protect myself. I'm extending that same advice to you. There is only so much that you can do. You've done it and then some. Its time to take care of you.