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Gemma, you wrote earlier “Apparently there is a difference between being actively suicidal and just talking about it all the time. Highly frustrating and clearly a problem in the system.” Yes there is a difference, and the system gets more worried with the ‘ideation’ plus an attempt. There’s no point in blaming the system, even if you don't agree with it.
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gemmab123 Jan 2020
How is your comment helpful? I'm a total stranger and you are just criticizing me and a situation you know nothing about.
As an advocate and ally for those suffering from mental health disease, I can ABSOLUTELY blame a broken system. And the social worker assisting me through my mom's physician filed a complaint against the local mental health agency for not properly responding to my call, and denying my mom mental health services when she was willing to receive them. These agencies are mandated by law to provide same day mental health services to those seeking them.
In my jurisdiction there are two choices when someone is a danger to themselves or others: go to the magistrate's office and have the police go to her house, handcuff her, and have her admitted for evaluation, (slightly difficult because I'm not mom's POA, but my sister is healthcare agent and she's helping me) or the person willingly admits themselves (but I still call the hotline and say she willing to come for evaluation..please advise location to take her.) I know this because I called the number and spoke with a professional about my situation with my mom. I'm not going to share details, but yes, my mom was describing how she would kill herself, and harm my sister, I might add. But when I called back a few days later, ready to take her in, whoever was on the other end of the phone decided that because my mom couldn't administer her own medicines I should call a senior health agency, which is just a referral service. And the person they said would call me never called me. Not the same day. Not at all. Absolute FAIL. So I reported them.
This is not my only experience with agency failure to provide help to people really needing it.
If someone is talking about suicide all the time, they need help. For crying out loud, people shouldn't have to attempt suicide to get the care they need. That is really messed up IMO. Broken system.
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Gemma, I admire your perseverance and fortitude.

I hope you stick around; you're a good resource and an exemplar of how to advocate for difficult elders.
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gemmab123 Jan 2020
What a kind thing to say. Thank you very much.
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I'm not aware of how a person with dementia is enabled with care. If someone threatens self harm, it's always best to report it and seek care for them. I'd let the professionals evaluate, but, when the brain is not working properly, I suspect the patient does not have the same capacity to scheme, reason and promote their agenda, as if they did have full mental capacity.

I might lower my expectations of what she is capable of and let trained people be responsible for her. If she's living alone and in dire need of care, (is she competent) I'd make sure the POA knows in writing and let them do their thing. If they refuse, I'd consult my own attorney about getting the proper authority to protect her from the risks she incurs from living alone. For people who are incompetent, at risk, and unable to care for themselves and their household, there are options to get them help. The financial issues are worked out. Those who can pay, pay and if not, arrangements are made. The Elder Law attorney can help explore that as well.

It's really sad, but, regardless of where a person who has dementia lives, they are likely to suffer. Even the best care cannot keep them from losing their memories, losing their ability to care for themselves, to ambulate, to bathe themselves, toilet themselves,...... to live life....it's unfair, but, inevitable with this cruel thing called dementia.

Some people have days that are better than others, but, they rarely are good. So, I would surprised if the misery was removed, regardless of what is done, though, I will say that my LO felt much better taking a med for anxiety and depression. Maybe, your mom's HCPOA might explore that with her doctor.
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gemmab123 Jan 2020
Thanks for your response. My mom's threats are just part of her drama. She wouldn't actually do anything, but it also doesn't seem to trigger any action on the part of health care professionals, at least for people with dementia. Something wrong with the system there. However, I do believe she's ready to die. She's tired of being miserable and alone. She was before her cognitive impairment began. Now she's really swimming against the riptide. I can understand total strangers not understanding this though.
And yet our culture supports keeping people alive no matter what, so that is what we do. And that's what we'll do. We will put my mom in a facility, and she will either decline or decline slower, plowing through her hard earned retirement on the outside chance she'll get a glimpse of happiness and peace. It is what it is!
Her anxiety meds have taken an edge off for sure!
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Gemma; some folks here have had difficulty admitting a parent into Memory Care/AL/SNF even with a declaration of incompetency if the patient doesn't want to be admitted. This seems to vary widely by jurisdiction and by facility.

I'm not arguing; I'm just pointing out what others here have come up against.
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gemmab123 Jan 2020
I appreciate that. I'm double checking that bases are covered as I believe they are in my location.
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Gemma;

I'm going to challenge your thinking (again).

Why do you think that your mother's basic care is on you?

While she was competent, she did not give you authority to act in her interests. She gave that power to an attorney. THAT is who should be covering all the bases, shouldn't s/he?
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gemmab123 Jan 2020
I can appreciate your tough love approach, BarbBrooklyn, I really can. No joke.
But there's always the ideal, and the real.
Ideally, I wouldn't be involved in this nonsense at all.
While she was competent she chose my younger brother to act as POA, and my older sister to act as healthcare agent. My brother was her golden child and he's an attorney living out of state with a young family. My sister has been more, let's say, selfishly inclined the last several years. But she helps with mom roughly equally now, paying her bills and helping with visits.
Short of driving my mom for a day and dropping her off on my brother's front porch, which honestly is just a drama-filled move that is far removed from my personal modus operandi, I put on my big girl pants and dealt with the situation at hand. I guess that's because I'm a double Capricorn, an optimist, a constructive collaborator, and true believer in taking inspired action when a person or animal less capable than me has crossed my path.
The POA is generally supportive and expeditious when it comes to paperwork and phone calls and I'm good with that. I'm not in the business of forcing someone to care in the same way I do.
To be real, my mom honestly never really knew her children, or what they are capable of. (This is particularly true of her daughters.) She was too busy criticizing, shaming, and complaining about us to even think about nurturing an actual adult relationship. If I criticized, complained, and shamed someone else, I would be perpetuating bad behavior.
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My mother is very similar with us but being a narcissist, not to the public. She does much better in an ALF than she did by herself in her own home. I wonder if push came to shove would your mother really rather die? My mother constantly claimed that but fought tooth and nail to live when she broke her hip, including to claim she wanted revived, against the DNR she previously signed. Some people just love to be miserable.
long story short, your mother may very well not want to die not matter what she says. But I would see if you can at all possible get her into a group facility to release you from pressure and give her social interaction. She may find someone she can complain to and that will make her happy
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gemmab123 Jan 2020
My thoughts exactly. Thanks for your share.
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"we were planning to move her near to my brother, but he has been dragging his feet and has now backed out. So I’m back to square one and am visiting places this week."

Do you think he will really move her if she's been declared incompetent? Why doesn't he want her near him? (I think we know the answer to this...he wants YOU and your sister to continue to be enmeshed with her, rather than him.)
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gemmab123 Jan 2020
Yes, all siblings are in agreement mom needs to be moved. I don't honestly think dwelling on why he doesn't want her there contributes to the solution. I don't actually blame him that much for moving away from her. I wish I had :) However, he should do his part by supporting and expediting the process, which for the most part he does. (As he did with my dad.)
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Physical problems soon follow whatever type of dementia she has. The decline accelerates at mid stage. Big loss of weight, muscle, bathroom issues. Unable to take care of themselves hygiene. Paranoid. Then they forget who you are...spouse too, but returns for awhile. Eating sweets a lot. Peoples name dont mean anything for they just repeat it and r unable to store the name with the face immediately after.

Medicine helps with that for a little while.

It's a full time job between caregivers and spouse. But they need to feel someone cares. Deep sadness hits them for they DO know what's happening to them even tho it might appear they are separated from that fact.

God bless you and your mother, for He will.
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gemmab123 Jan 2020
Thank you. And yes, people who care are crucial. For all of us.
Mom's not taken medicine for the dementia as there wasn't a way to get it to her regularly.
I'm familiar as my dad also developed cognitive issues! But his decline leveled off once his physical needs were met.
My mom has been divorced for years and has been alone since then. She is under the impression that since she's physically capable she doesn't need help. Which of course we all know is false.
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Even with POA, depending on the language, you may not have the authority. POA does not allow you to do things she does not want to do. If she is formally declared incompetent to make her own decisions, then POA can act in her best interests which may be to move her. Clearly she is not competent but this must be stated by a doctor. The police are not going to remove her from her house. A call to 911 also won’t just get her out. If she talks sensibly to them, they may just leave but it is your best option. You mentioned she had seen a geriatric psychiatrist. That doctor could also declare her incompetent after a new evaluation. But of course she would have to go to office. Again best option is to look for a good reason to call 911 to get her out. And then have a determination made that she is not safe to leave alone and place her
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gemmab123 Jan 2020
Thanks for your response. I'm not convinced 911 is my best option, but it's an option. Her doctors can and will assist us in providing necessary declarations to move her. She does go to the doctor with me quite readily, so thats a plus.
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Gemma, I'm with Barb - you have not mentioned that you or any of your family have guardianship or conservatorship over your mom, only POA. A person has basic rights in the USA, including the right to determine where they live unless they are deemed incompetent by law. If you do have that authority, then by golly, don't sit around and talk about deceiving her. Just call the private ambulance and have her removed to a locked unit.

If you all don't have the legal right to do this, legally she can leave - as Barb said.

I went no contact with mthr who refused to get treatment for her mental illness and who enjoyed slicing people to shreds with her words. 8 years later, the police were called on her numerous times because she was wandering. They in turn called Adult Protective Services each time, which allows them to have documentation if they need to seek guardianship. APS found me in the phonebook and asked us to come rescue mthr. We applied for and received emergency guardianship for several months. That is when we placed mthr in a locked memory care. She was in such bad shape she did whatever my husband asked.
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gemmab123 Jan 2020
I will review it again but I believe we’re covered for placing her. Already discussed with her doctor who provides letter of incompetence and POA is an attorney with bases covered. Thanks for the input about your experience.
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I thought that you didn't have financial or medical POA for her, or guardianship.
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worriedinCali Jan 2020
She doesn’t, she said below her brother has POA. So even he doesn’t have the authority to force her to move.
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Gemma, the problem is that you have no AUTHORITY to move her. That it why some of us are suggesting a call to 911.

This will become a bigger emergency down the road; I think at least some of us feel it will SAVE resources if you call 911 and get her hospitalized now.

Another thought would be to call a local hospice organization for an evaluation. If she truly wants no treatment for what ails her, she should be amenable to that.

As it is, if you deceive her into placement, she is free to walk out of any facility and return home if she has the ability to call herself a cab.

We ALL empathize with your situation; all of us here either are or have been caregivers and we understand the struggle of making "the least bad choice". Your mother has longstanding psychiatric issues that have never been addressed which makes her dementia even more complicated than it usually is.
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gemmab123 Jan 2020
Why are you assuming I have no authority to move her? Not the case at all. In fact we were planning to move her near to my brother, but he has been dragging his feet and has now backed out. So I’m back to square one and am visiting places this week. But this has nothing to do with the fact that she won’t go willingly, she won’t sit be interviewed or evaluated. She won’t talk to anyone, including hospice. It makes it very difficult, but not impossible. Deception will indeed be needed, and I don’t have a problem with that. I’ve reached the end of my skill set with my mom. Her doctor recommends a locked memory care and though she can be high functioning when she’s not emotional, I have to agree.
I should add I’ve been through all this with my dad, who I had to move across several states on short notice, who’s AL failed miserably to meet his needs and he’s now in SCF. So not my first rodeo. He was, however a very happy person who is peaceful and who’s dementia has actually leveled off due to music. Another story though.
I think for the most part the essence of my post was missed, which is fine..
AL will very likely make her decline faster. Which is evidently what she desires. It did for my dad and he was agreeable to it. There’s probably a .05% chance she would be able to adjust to it (she’s been living alone for 25 years.) But that is not my responsibility. Basic care is.
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It is no longer about what she wants, it is about what she needs! Enabling and over caring for her is not the answer...if she threatens to kill herself tell her that you will call 911 and do so, time to call her guilt ridden bluff.

You are not helping her, you are part of the problem, listening to all her nonsense is counterproductive for her and you both, become part of the solution, do not continue to be part of the problem.
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gemmab123 Jan 2020
Your tone is really offensive.
I’m well aware she needs help and that’s why I’m moving her. Nothing I’m doing has anything to do with her wants.
And I’m not going to waste the valuable resources of 911 to play into my mom’s drama. Not a solution.
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My mother is 93, with dementia, living in Memory Care (and Assisted Living prior) since 2014, and has been threatening to Kill Herself since I was a child. She'll probably live to see 100, making me nervous and anxiety ridden until I'm 70. Misery prevails, just like your mother, but at least I have the peace of mind to know that she's okay........she's safe............she's being fed and helped with showers, etc. As far as killing herself goes, Not. Gonna. Happen. It's just emotional blackmail and a manipulation tool that doesn't work with me. When she'd threaten to Jump Out The Window at her ALF apartment, I'd remind her she was on the first floor and jumping wouldn't do the job. She should go to the roof instead if she wanted to Off herself. Sound mean? What's REALLY mean is what these women do to their children. THAT is mean.

Either leave her alone and wait for something to happen that forces her to the hospital where she won't be released back to live independently, or, call APS and have them step in.

I feel for you, I really do. All this BS, negativity and drama takes a huge toll on US as the children, ruining OUR peace of mind BIG time. Meanwhile, they go along their merry way wreaking havoc and despair with every step.

Sending you a hug and wishing you all the best of luck in the new year.
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gemmab123 Jan 2020
Thank you so much for your response! Made my day. Best wishes to you. And your mom.
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Gemma, I misspoke. It's not good for HER to ruminate or for you to subject yourself to her rumination.
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We have a similar mother only my mom never talked about suicide. Why that, when she could talk about my brother wanting to die or my father dying. My point is short. My brother did die, on his bed. Unfortunately, it was on my 94 yr old mom's big wedding day to her INVISIBLE fiancee so nothing was done about my brother for 3 days, until I discovered it. Somebody in the large group of police and firemen and health care workers called Adult Protective Services and reported my mom. I was told that if I took her back to her home I would be charged with elder abuse and that she needed care 24/7. I did exactly what I was told and put mom into a care facility, To this day, I am glad it was taken out of my hands. My mom never asked to live with me and I had never had to say no. My point- make calls to other agencies. Use some of her more creative language. Maybe it will work for you.
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Your mother has been miserable, as you say, her entire life, so that there is nothing new now. And given the realities of aging, it is now almost a proper response to the constant fear and loss involved in aging.
So the question is "Are you prolonging with overcaring". I doubt it. You cannot ignore safety needs. We are not a society who will paddle out to the ice flow and sit our elder out on the ice to pass on. We are a society that attempts (even if not very successfully) to care for and keep safe our elders.
I think that her wishes are reasonable. She is over a life she really never did enjoy, but there is nothing to be done about THAT unless she is of sound mind and decides to do a final exit by stopping any intake of food and fluids. That is now being done by some elders and by some with debilitating chronic disease, and indeed with the help of their families. I myself have discussed with my daughter the possibility of opting for this at some time in the future, and she and I understand one another.
Your mother however, is now diagnosed with a disease that our laws and our society has said means she no longer is of sound enough mind to choose a final exit option. So she requires the help of society to endure. Sadly.
I wonder if what you are asking is what exactly your responsibility is. I think you have a moral responsibility to see that her finances are in order, that she has a POA to act for her, that she is safe (that is to say from burning down the house, and etc). If you are health POA you need to discuss all of this, just as you wrote it here with her doctor. And with your mother present. You need to discuss palliative care, a choice not to treat, and a choice of comfort care now moving forward. You say you believe her safe alone, but that you are responsible for a lot and there are not funds to make it otherwise. I think that means that sooner, rather than later, your Mom will face placement; as there isn't a lot of money the placement will not be to her liking, but as you describe her it would not be in ANY case. My bro has money enough for a nice assisted living. Doesn't mean he is thrilled to be in one. DOES mean he will make the best of it as that is how he always lived his life.
So, people don't change. Basically you are saying here you Mom is ready to go. And you are ready to let her go, as you see her life as miserable. I think these are reasonable wishes, but as I said, there is no ice flow, and that isn't how our society has written things out. My brother often says he wishes he had not survived his car crash. In all honesty I wish that for him. But he did. And we are BOTH left with making the best of it we are able. Listening to your sad story makes me see how lucky we both are that we can still pull some joy out of life, even if we pull it out kicking and screaming.
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gemmab123 Jan 2020
Thanks for your response. I do think some souls choose to leave in one way or another, and our culture struggles with it. We've gone over all this with the doctor, her finances are kept, and my brother is POA who, while not involved with her care, agrees she needs to be moved. She's unsafe and definitely unhappy. There's a shred of hope she would acclimate outside her home, but we understand she likely won't.
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My mom threatened suicide all the years I was growing up. She NEVER attempted to do anything of the sort, but it is extremely frightening to have grown up thinking if I ever stepped out of line, she'd kill herself and it would be my fault.

Now, I know through years of counseling of my own, that the mention or 'ideation' of suicide is often enough for a counselor or psych doc to call a LO and 'rat you out', so to speak. Or depending on how serious they deem you to be, a forced hospitalization.

Don't know how that would roll in your case. Probably be enough to get a 911 call, but then your mom would say she was just kidding or something, and they'd file their report and move on. Maybe it would, in fact, get her in the system.

We hate to do anything to 'force' our folks to do the things that are best for them, but we sit on the sidelines, wringing our hands and frustrated by the daily dramas.

You may end up forcibly have her moved. Have you called APS and reported an elder in danger? Someone called on my mom, years ago, after they heard YB screaming at her. It came to nothing but a report, but kept YB from yelling so much.

Do try these two things--A 911 call and a call to APS and then regroup and see what can be done if she isn't removed by someone else, you may have to become forceful with a change of living arrangements. Look at it this way--could she be worse? You may be tough with her, but in the end, she isn't safe or happy where she is now.
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gemmab123 Jan 2020
I agree it will be a forced move, either by an accident whereby she is compelled, or by us forcing her. I'm not ruling out calling 911 and having them remove her. TY
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Forget the agencies.

Call the EMTs when she mentions wanting to kill herself.

When she starts on her tale of woe, get up and leave. Not good for her or you for her to ruminate like this.
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gemmab123 Jan 2020
I'm not ruminating. I was sharing an experience and tried to be descriptive. My self preservation methods are fully intact :)
I agree I'll be relieved when she's out of my primary care!
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I hear the anguish in your post. You are trying to help a person who refuses to help herself. You have been trying so hard for so long that perhaps it's time to step back and stop enabling her. Enabling is disabling.

It sounds as though only a medical emergency can get your mother the care she needs. More than likely, she will land in the hospital due to a fall, for example. Do not accept discharge to home. Make it clear to the case manager that you and your siblings want her placed in long term care.

Given the choice, sign DNR papers. At the very least, when her body finally gives out, she will not be resuscitated, which is a terribly violent act. In my opinion, it's a final act of kindness.
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gemmab123 Jan 2020
TY very much for your response. I agree with all of it!
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CM didnt say that you weren't caring for your mom.

She said your mother's care needs weren't being met. And that it wasnt your fault (or your responsibility, I would add).
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gemmab123 Jan 2020
The reply was "neither of you are caring for your mother at all."
I fully realize it's not my fault. My mother has chosen a life pattern to not be self-responsible for her emotional health, to not seek wellness, or inner peace, and while the jury is still out as to the many causes of dementia, there's certainly evidence that lack of a healthy mental, emotional, physical and spiritual lifestyle and social interaction can be a contributing factor to brain vitality. I think it totally stinks that she has to deal with dementia on top of all her other issues. She's exhausted.
To a certain extent, it is very much my responsibility as her adult child. As a compassionate human being. To see that someone unable to care for themselves is taken care of.
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Have you considered calling 911 when she mentions suucide?

Get her admitted to the hospital, get her a thorough psychiatric evaluation and start working with the social work/discharge department the minute she gets admitted. (Not "observation status"...admitted).

Challenge any thoughts on the hospital's part to send her home. It's an "unsafe discharge". (Those are the magic words).
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gemmab123 Jan 2020
Yes. I've been through all of that. Called the hotlines. They referred me to agencies. Worked with a social worker. When I tell them the situation I guess they don't believe me when I say she's suicidal?! Apparently there is a difference between being actively suicidal and just talking about it all the time. Highly frustrating and clearly a problem in the system. Though we have not ruled out the police coming to get her forcibly. Pretty much plan B.
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I have the same situation. Exactly. And my mother lives in my house, so I get to hear it 18 hours a day (if not more).

Since the therapist couldn't help, will your mother see a priest or pastor? He or she might be able to convince her that God is not punishing her. My mother is a non-practicing Catholic and refuses to see anyone, but still maintains that she's being "punished for her sins."

I really feel for you. I know what it's like to hear that kind of thing day after day... it's a real downer, and it's very difficult to be around such negativity on a regular basis. It's been useless for me to try to talk her out of her persecution complex, so I just pretty much let her rants go in one ear and out the other. It's all I can do. I know that's not much help, but if nothing else, take comfort in the fact that there's someone else out there who understands.
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gemmab123 Jan 2020
She sometimes says she wants to go to church, but when it's time to go, her anxiety takes over and she won't leave the house. We've even gotten part way there and turned around.
Eeep. I can't imagine her living with me. Best wishes.
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If she runs out of money, there are government programs available. You cannot resolve all her issues for her and nothing that you do will make her happy.

Might be time to back off and stop listening to all her negative BS, don't contact her everyday, move the complaint department to the 4th floor, far away from you.

You can change this situation, place her in AL, don't over think this. My mother fought my brother and I for 10 years...she didn't want to move out of her house, well she had a stroke, we sprang, she is now in AL and loves it.
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gemmab123 Jan 2020
Yeah we will have to move her and soon. Will have to deceive her into it which I hate. I figure there's a 1% chance for a turnaround!
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Over-caring for her???

She lives alone in a house where the cooking facilities don't work except for the microwave. She probably has incontinence but through shame is dealing with that herself. She is deeply depressed. She feels isolated. She is fearful about her financial security.

And NONE of this is your fault, mind. But much as you and your sister would love to, much as you try hard to, neither of you is caring for your mother at all. Through her resistance (not her fault, either - she is mentally unwell) most of her care needs are being neglected.

So, starting from the premise "could it get any worse, really?" I think you should get in touch with your Area Agency on Aging, tell them what you've told us, and ask for their help and advice. It may be that things will have to get worse before they get better, and you and your sister will have difficult choices to make, but it seems that there is no possibility whatsoever that your mother's quality of life can be improved while she remains where she is.
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gemmab123 Jan 2020
Firstly, it's abusive language for you to claim that I havnet been caring for my mother at all, and I'm considering reporting you.
I've gotten in touch with all the agencies through the course of her care. I'm well aware things will get worse and not better. She obviously can't remain where she is, and she will have to be moved, whether she wants to or not. We had plans to move her near my brother but he backed out. And we cannot maintain the level of care she needs and will need by going to her house. Hence the move. I was simply asking if anyone else was experiencing this with their relative.
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