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.
What a wonderful daughter you are. Don't worry, and have faith, that the truth will all come out, and you are innocent. I am so sorry for your loss, and my heart goes out to you, for the additional grief that you must endure. Take care of yourself, and things will always work themselves out, no matter what.
Even in this i feel your sorrow. This seems to be a very unrewarding job, but the man upstairs is all that matters.
the same thing happened to me, everyday for 9 yrs. and everytime i won! It's God. He will never leave you. Dont forget that. Lean on him. You did a great job that no one wanted.
I buried my dad 4mo. ago by myself, people run like rats when it's time to take care of a parent. If you have one friend/caregiver that gave you a thumbs up, hold on to what she said. Ignore the crazy stuff. You did what needed to be done.
You chose not to walk away. Where were they?
god bless you!
Nearly all of us have gone through times when the people we are caring for accuse us of not doing enough, or not doing the right things. Even when we show proof, it doesn't matter, as truth is not the issue. In your case, you have many people to vouch for you and the care you gave, so you will come out all right, but going through this is truly a nightmare.
We are thinking of you, mentally knowing this can happen to anyone who cares for someone with dementia or mental health issues. We are brothers and sisters in care and wish you the best outcome. Please keep us posted.
Carol
If you wrote on a calendar the appointments, do so. If your late mother's doctor can print out a list of appointments, all the better. Grocery bills, etc., to show how much food you bought. neighbours as witnesses.
Not to be vulgar, but doesn't it piss you off the emergency staff don't get it! They sent my dad home with delirium, due to radiation treatments and a urinary tract infection. Totally undiagnosed.
All the best.
Linda
The people who do the most become owned by the recepient. They seem to only become more demanding and tempermental...like a spoiled child. A spoiled child will behave in front of stangers, and yet they will make their home a living hell. It is difficult to set down ground rules with a parent, even after they become children again. Children with power. Not a pretty sight no matter what the age. Dad dosen't do time out.
PLEASE keep us posted as to the out come of your situation. My father has slandered us in the most frightful of ways. Fortunately most people know his history of illness, but one day, some well meaning person will make the call... I lose sleep about that. One day, someone will believe him. Fortunately, so far, those who believe him call us first, and fuss at me for being such a bad daughter. If they only knew. Child abusers never go away, they just become children themselves. Abusive children.
Who do I get to report him to?
Why do we put ourselves through this? Because we do not want to be charged with neglect. Evil, bitter circle. I am starting to hate my life as much as he hates us.
That is the thanks a caregiver gets when it is all said and done? I would recommend you check online with your state's Office of the Attorney General Consumer Protection Division and ask them whether they would be willing to review the matter to ensure greater, rather than less objectivity, timely processing, due process, and, let them know your nursing license is at stake, which is your means of earning a living.
Let them know how long you took care of your Mom and those who knew, including her doctors, your level of care. Please let us know how this works out for you. What a chilling effect on any caregiver to have such a punitive system out there ready to pounce without any added corroboration, other than a patient's perhaps delusional rants, when there is no evidence of patient neglect. Is there anything at all they have told you that to them epitomizes neglect, even if not bruising?
I would ask for the specific allegations and examples of neglect, in writing, so that you may at least be allowed to speak to those issues.
Where is the due process in all of this? Are you at some point interviewed and allowed to respond to each of the allegations levied against you? I would hire an attorney and demand to be intereviewed face-to-face, with my attorney present. That's serious stuff, and it's the rest of your life and mental well-being which hang in the mix. How horrible! I am very sorry for the bureacratic tangle that has taken over your life and liberty at a time when you need to be healing and moving on with your life. Don't lose hope, and don't give up the fight to clear your name. Also do not hesitate to write a letter to the head of the agency that is investigating the allegations your Mom levied against you to request their full policy and procedure of how such allegations are reviewed, by whom, where filed, disposition handling, etc. You have every right to know. It is your life; not theirs! Am rooting for you that the truth will overcome the mayhem in your life right now. Keep sharing.
Next, list down in a concise, objective and neutral language, all of your actions, activities, etc that you carried on.
Then try to link you actions to the Board's requirements and see which of your actions are in violation of any of the Board's requirements.
This analysis will give you, at least, a concrete and clear sense of how close you followed the law in the care of the person, if very close, it will dificult to prove neglect given the surrounding circunstances, if a number of requirements were not met, then you'll have to justify it, or risk a finding of neglect.
I am my wife caregiver since 1991, when her Neurologist told me she had the begining of AD. Later verified thru all the tests, etc used back then. were married on Dec. 31, 1968 and I love her today more than ever and continue to enjoy her company as it changes with the progress of her illness.
Please, note that all old people can not help acting the way they do because all of their body systems, vision, hearing, organs, and structure, and apearence are roting, and so is the way younger people treat them, so if you put square tires on your car, don't spect the same smooth ride it gave you before. The bahevior of the elderly is the responsibility of WHOMEVER INVENTED OLD AGE.
Frank Soto, PE
This is trully disgusting, trully, here you are doing the best you can and they believe the words of a woman who is not right in her mind. I hope with some of your proof this will all be dismissed in a timely manner shortly! I know how you feel like I suspect my cousin's g/f of calling APS (Adult Protective Services) being a nosey so and so because she does not want to believe all I have told her how difficult my mom has been, and where is she...no where to be found, but had a big mouth. And what is she...nothing but a relatives girlfriend who has nothing to say in the families matters, least of all mine and my mothers matters. So I feel for you big time. Please join us on my post "mentally ill parent" a few of the responders here also post there.
It is trully something that the state now wants to jump in and do something...where are they when we are dealing with such a difficult time with elderly parents who are now in a mentally disabled state. Do they think we are professionals? Then when we cannot do the best they want to step on us....I think the balance here is totally wrong. I am really tempted to write to Prez. Obama's website about this delima since they are working out healthcare right now. I belive the government should step in and help us with these types of cases, instead of backfiring on us like it did you! They talk about preventative medicine...well here is a perfect way to help. Help us with the parents who are going through Dementia, we are not the professionals who this gets thrust upon. Here we are as caretakers and it is thrust upon us, and then just to get stabbed in the back for trying to do the right thing. Simply amazing on how they let us struggle with this on our own. They say there is so much help out there...I have yet to find help! The biggest help is others like yourself and your posts!!!!!!!!!!
If I had not experienced some of the same issues myself, I would have thought that you made most of this up. But betrayal by family or friends leaves deep emotional scars. In an ironic way your mother may have done you a gigantic favor by putting obstacles in your path to licensure as a mental health professional. Think about it: how easily can you quell the resentment you hold against your "crazy" mother when you are dealing with patients who may be doing the same to their family members? I am not judging you on this--merely asking the question. Based on your answer, you may want to rethink your plans for the future. You are now free. Do you want to drift back into bondage? What about your daughter and grandchildren? Sounds like you had to walk on a lot of eggshells just to go visit them while your mother was alive. Why not find a line of work that allows as much time for them as they may want to spend with you? And make sure to spend more time surrounded by healthy people who are able to reciprocate your love and care. Otherwise you may turn into your mother without even realizing it. Now you have a chance to move on and let go. Don't waste it.
As for your situation, perhaps you have friends who could come to the rescue, perhaps you've asked for advice before on some caregiver list. My mom isn't like that, thank god. But I am very taken for granted. The other day she handed me a card she made at her day care center using sitckers, like it was something to throw away. Inside were two stickers with my name carefully written (not by mom), and two stickers that said "Thank you" and "I love you." It really hit me.
Anyway, there is this veil that covers all caregivers, a veil of suspicion and potential guilt, that we are abusers. OR might be. We are behind from the beginning. Good luck in dealing with this. Hope the nurses will back you up about your Mom's behavior. And of course she called YOU to help her.
Carol
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!