Elders that control caregivers after their death

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I have been a reader of caregiver lists for the last few months after searching for someplace with others that could identify with the struggles of taking care of my 90 year old mother who was always dissatisfied with both her life and those around her. I have been her sole caretaker (in her home)for the last four years while working (another)full time job out side of the home.

Like many others, I really lived two lives during this time, hers and mine. I took her to multiple doctor appts, advocated for her rights, paid her bills, cooked her meals, monitored her prescriptions, arranged for any home health care, and all of the other duties that come along with this type of commitment. Also, like many caregivers, I never heard a word of thanks or comment of appreciation during this time, but rather a daily barrage of complaints about the level of my care (which she constantly told me was nonexistent) and threats of the repercussions that were to come should i not do what she wanted at the exact time and way that she wanted it done.

My mother had a long history of anxiety and catastrophizing that would cause her to behave irrationally if her needs weren't met. She often threatened to call the police and have me removed from "her house," for instance if I talked about following through on a suggestion from one of my siblings that she get a wheelchair to help her be more mobile. She frequently complained to others (my siblings and home health nurses, etc)that I wouldn't do what she wanted, was trying to kill her etc., but they of course knew that the opposite was true and would often say "God bless you, I don't know how you do it!", recognizing that her constant complaining and her oppositional behavior was who she was..

A few weeks ago, I let my mother know that I would be taking a trip to visit my daughter and grandchildren this month. She had a doctor's appt (pain shot for stenosis) during this time and we talked about whether to reschedule it for before i left, after I returned, or arrange for a volunteer to accompany her while i was gone. After much discussion and changes of mind, she decided it would be acceptable to schedule it before i left and felt she could wait the 4 days rather than take me up on the offer to bring her to the hospital for a check up to see if anything else was going on. Despite this arrangement, she reported that her pain was increasing and I ended up calling the EMT's to transport her to the hospital where she was admitted for a UTI that her PCP was aware of and had been treating. I arrived at the hospital before she was transported to a room and remained with her for most of that day.

When I arrived home later in the day, I received a call from the Department of Children and Families and was informed that there had been a complaint made against me for Elder Abuse based on my mother's report in the ER. Specifically, she had told them that "she needed to go to the doctors once a month for her diabetes and that I only brought her once a year, that she hadn't eaten in two days, and that i had knocked her medication out of her hand and wouldn't let her take it." When questioned about this later, she of course told everyone that she was "just kidding" and that I "shouldn't worry about it, that they had "no sense of humor," but by then of course it was too late and the wheels of the State system had begun to move.

I am currently under investigation for "medical neglect" which will be either "unfounded or founded." Either way, my name is now included in the State's database where, as a mental health professional who is seeking licensure, it will remain permanently even as I apply to take the State exam.

As a mandated reporter myself, I am aware of the rules and regulations concerning the reporting of abuse, but am angry, frustrated and outraged at the lack of research that was done before the ER placed this call. They had admitted my mother at that time, so she was in no imminent danger, there was no sign of bruising or neglect, they had access to her PCP's office who they did not call (she had just been there 2 weeks earlier for her checkup) and to her home health nurse who had been in the home each week for the last two months. Rather than call any of these professionals, they immediately placed a call that could not be reversed.

I am left now with arranging for my mother's funeral as she died 2 days after she was admitted to the hospital from rapid respiratory failure.. hours after they told me she was doing well… and coping with the aftermath of her destruction. Ironically, within 24 hours of being admitted to the hospital, she had called me crying to tell me that the nurses were neglecting her and that I "needed to come right away," which of course I did.

It is too soon to know what I can or should do.. the DCF worker cannot tell me how long this will take to resolve, but in the meantime I will still need to provide that caretaking role and cope with not only my grief at losing a parent, but the enormity of the situation she left behind.

Any suggestions for information on how to move forward in this type this type of occurrence would be helpful.

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I was reported to APS and when they came to my house it was a nightmere and thought I had to answer all their questions but when she said SHE was going to push me out of the picture and hire 24 hr care 7 days a week I knew she was a nut and later found out she was a case worker and not a social worker but was shaking when she left and called my daughter who worked at another county's social service office and she told me not to worry they had no power. A few months later a man running for potical office stoped into interduce himself and I told him the story and he told me he had worked in social service in our county abd others and he reported her and followed up on it and nothing was done. I would hire an elder lawyer and let him handle this.
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Is video taping legal?
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It is "guilty until proven innocent",there is no justice in the judical system. Most lawyers laugh at people even thinking there should be. People really don't know or realize how broken the system is until they get involved. The lawyers profit greatly from the whole pitaful mess as does thejudges. I use to think it was legal for lawyers to lie,that they were immune some how,since I have learn that other lawyers and judges[who are also lawyers] turn ablind eye to the lying. I have also learn that lawyers do not like to tick off other lawyers. It makes a black mark on you with your peers. The more friends you have as lawyers and the better relationship you have with judges the better chance you have at winning. The system is not what you grow up thinking it is. It is a very profittable business for some. Who do you report a bad lawyer too,the BAR ASSOCIATION,who are another group of lawyers. Idon't know how things are in other places,but here the government agencies are the main workforce.I wish I HAD known then what I know now. People who are 80 and 90 grew up in era where a handshake meant everything and your word was as good as gold. You can't blame them for not understanding how bad things have come. My dad grow up in the depression era and fought in WW11,all of these government agencies and lawyers didn't have ahold as they do now.He told me once the biggest crooks were the ones in 3 piece suits trying to out pencil you, not the thug running around with a gun. Right now I'm being out penciled.According to the lawyers I've talked too,video is the best defense of any accusation.
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In the case of caregivers, there are few provisions for "innocent until proven guilty." In fact, it often becomes a matter of "their word against ours," and if said senior/ward/client is an elder, and screams "abuse," it is automatically presumed true, with the burden to prove otherwise upon the accused. Good luck with that! No such protections for "Caregiver Abuse" by the elder. They can lie about a caregiver and are generally believed, because they are generally considered to be weak or frail and helpless. That is the mental image, and often the physical reality. No matter if they are verbally abusive, etc.

You're right Nancy, about the nanny cam. But how many people have them? It's yet another expense, and not everyone can afford it. Cameras are not allowed in bedroom or bathrooms, (private areas) where much of the caregiving is done. They often have to be installed by a professional, or someone with some technical abilities, and sometimes tied into a telephone line. (So many have cell phones these days.)

Another protective measure used, is an audio recording of interactions between the patient/parent or elder/client and caregiver. But this must be disclosed to both parties in order to be admissable. Even then, the evidence can be suppressed for various reasons. If both parties are aware of such, they may moderate their behavior accordingly.

Think about this: the cost of defending yourself against charges or accusations, (even false accusations) can be very expensive. How many caregivers can do that? And how can one defend against what is not observable.

Practically speaking, many believe an elder and suspect a caregiver when there are problems. After all, doesn't the latter often have something to gain (monetarily or other...) from the former? Then there's "conflict of interest," with other non-caregiving "interested parties," guardians, etc. Lots of peripheral people and situations to consider... In our sue-happy society, we all should be concerned about protecting ourselves.

But WHO IS PROTECTING THE CAREGIVER? (A real concern...) They are often verbally abused, mistreated, and underpaid. They work long hours, trying to meet sometimes-impossible and sometimes unrealistic demands and expectations of a loved one or client, and other family members, etc. And when things go wrong, who is the first to get the blame??? (False accusations and charges are a real threat, and defense often impossible.) As many have already found, caregiving is often a very thankless job. Unfortunately, it sometimes has its victims, too. Sad!
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I'm thinking that more people ought to invest in a 'nanny cam' and set it up. Maybe a recording of what is being said by the 'life sucking' parent ought to be documented. Also, I too have a question as to why the hospital said, all was well, then she dies. hmmmm There ought to be some stop gap measures when reporting abuse in the first place. I KNOW there are cases of elder abuse, but what ever happened to 'innocent till proven guilty'?
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tennessee, what a sad story. My heart goes out to you. Can relate to the character assasignation. Wish I couldn't. What a nightmare! God bless you for caring for your dad.
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tennessee, what a nightmare you have been through. My heart goes out to you and your daughter. It is pathetic how siblings can turn on each and totally forget the parent(s) who are in need of care and attention.( My sister has no desire to participate with Mom's care, she "allows" me and my kids to do it all.). You made your father proud, that has to be a comfort to you. I wish you good luck and much strength to get through it all.
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God Bless You!
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my young daughter and I took care of my Dad by our selves, as you pointed out some folks can be controlling. I have two brothers,one is a lawyer. One is in realestate,needless to say both were to busy to help or visit.We live in a very rural and isolated area, had a hard time getting anyone to visit. I Cried,I PLEADED,I begged for help.People would ask about my dad when I was out doing his shopping;I would say,"come visit,he needs to see some one besides me."My daughter,who had lost her dad to cancer,was the light of his world,his angel,as he would call her.We were very close,us against the world pretty much. My anger mounted against my brothers. I resented like hell they would not help.I could tell my father resented they were always to busy. One was to busy making money the other to busy with politics and the church, believe it or not. I had always been the one to help. We live on our family farm, I HAVE FOR 40 something years. It is the only life I know now. As most kids I watched my dads health slowly decline,wondering when my brothers would finally step up to the plate.never happened,so I finally stop asking.My dad was a very strong man,a pillar of the community,never would ask anyone for anything;except for me. I was his superman,I was his eyes,his legs,his voice.He could still be independant because I was at his beck and call. I Loved my dad,I WOULD DO JUST ABOUT ANYTHING FOR HIM AS HE WOULD FOR US.My dad would say OUT OF SIGHT, OUT OF MIND,concerning my brothers. He would say,"A daughters,a daughter all of her life,a sons a son until he takes a wife." He would tell my brothers this, he thought it would matter to them,but it didn't. I Think it made them more resentful of me. Trying to make along story shorter, He deeded me the family farm. He wanted it to stay in the family,we had a tight bond and I Was here for 40 odd years,not to mention his little angel. My dad had been in wheel chair for about 10 years. He couldnt get around, but his mind was good,he was 86 and then it happened,he could not get in and out of the wheel chair anymore. He was bedridden.He had to use the bathroom in the bed on pads.He refused the Daddy diapers, he refused the bedpan.I had never seen my dad without his shirt,I freaked out being the daughter.He was abig man, I was kinda small. I had a hard time moving him around,Again I begged my brothers for help. I YELLED at them for not being better sons, I tried to make them feel guilty,nothing worked. I was very self-conscious at first for having to bath my dad as were he but then I decided I loved him more than anyone,so who better than me.He started getting abedsore on his bottom,so once more I FREAKED OUT,calling my brother, who is a attorney.I told him me and my 7 year old daughter had to have help.Ifigured he's more educated than me and being a lawyer,he was more equiped.He did gett us home health,which was true blessing,but at the same time he started trying to undo all of my dads paperwork he set up for me and my daughter. It was all legalso couldn't change anything. Now comes the charater assassination. My dad knew what my brothers were doing,but wasn't able to stop them.They want our farm,as does the fleet of bulldogs my brothers have hired. They sat as buzzards on the fence waiting to move in. They didn't anticipate my father living as long as he did and he's mind being as good as it was. They tried to get him to change the paper work, he wouldn't do it. We live in small town, they started ugly rumors about me. I was reported to human services,they tried to put my child in foster care.Thankfully I happen to have good reputation and my child is a honour student.Keep in mind my brothers never came down and really don't know any of us or what we did or do. every problem they could cause us they did,and yes it is a misuse of our system. I don't hate my brothers, but I DO FEEL SORRY FOR THEM.I can look in the mirror and know I DID THE RIGHT THING. That is what is the most important. It is sad the system gets misused, I blame the system for letting this kind of thing to happen more than I blame my brothers.I don't know how the lawyers can live with themselves, I worry about my brothers souls.My dad passed away 2 years ago, I was holding his hand as he took his last breath. I told him he was the GREATEST DAD in the world and how much I LOVED HIM. I helped the nurses clean him up for the last time and knew he would have been there for me also if things were different. Who could have done it better than I, BECAUSE I loved him the most. My youngest brother who is six years older than I DIDN'T COME TO THE FUNERAL. How he sleeps at night I DON'T have aclue. Unfortunelly when someone sues you, you have to defend yourself at 250.00 dollars ahour. I've learned lawyers live for people with farms dying. They look at it as hitting the jack-pot. They want to clear cut and sell. I'm fighting for my dad and my daughter. The system is a broken system which can be easily abused.I F YOU DID THE RIGHT THING THAT IS ALL THAT MATTERS.
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My husband had a comment that made a lot of sense to me. If your mother went in the hospital relatively healthy -urinary tract infection, and died days later of an unrelated cause, perhaps the accusation is a red herring to get you off of their liability? I do hope you have a lawyer.
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