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This is a copy of an e-mail that I sent to a columnist for the Wall Street Journal. I am very desperate for any help to get the nursing home to stop the psychotic medication they are giving my Mom, it is literally killing her. I got to thinking that the internet is the fastest way to communicate and there has to be someone, somewhere out there that will help. So please forward this to everyone on your list. I realize that I may get phone calls from all kinds but it will only take one to help and Mom needs that one, so do the other residents in that home.

Thank you,

Sheryl

-----Original Message-----

From: MS Specialty Products [mailto:msspecialty@frontiernet.net]

Sent: Saturday, February 21, 2009 1:06 AM

To: 'lucette.lagnado@wsj.com'

Subject: Chemical Restraint on the Elderly

Hello, my name is Sheryl Stewart and I am grasping at all straws right now and asking and pleading with anyone who will listen and who will possibly help. My mother Selina Preston is in a nursing home (Harborside) in Bryan, Ohio. She has been there a year and was put there by my sister Jan. Jan got Mom to sign a POA less than 48 hours prior to placing her in the home. Mom had lived in Michigan in the same house for 38 years. Four out of 5 of her children live in Michigan, including Jan. Because Mom is in Ohio I am stuck on not being able to do anything. Jan has refused to let me see her because I am having an issue of them giving Mom psychotic meds.

On December 24, 2008 I went see Mom only to find out that they had just transported her to the Luthern Hospital in Fort Wayne, IN to get her meds straightened out because she was getting very agitated and hitting. Before Mom left she could feed herself, dress herself, toilet on her own, walk, talk and had her eyes open. When she came back she sat and drooled, wore a diaper, had to be fed, dressed and wouldn’t open her eyes. Jan did ask the doctor to take her off the extreme meds, Trialafon, Lithan and Thorzine. He put her on high doses of Seroquel instead. Mom kept going on a down hill spiral. On January 30, 2009 my brother Randy called me from the nursing home and said that Mom was extremely dehydrated and that they wouldn’t start an IV unless Jan said they could but they wasn’t going to call Jan. I called and called and finally got a hold of Jan and she said she would call and get the IV started. I drove to see how she was and all she could do was sleep and her breathing was very labored but her coloring was looking better every minute the IV was going. On the morning of January 31, 2009 my brother-in-law Ken (Jan’s husband) called and said the nursing home called and they wanted the family in. We all rushed to be by Mom’s side. My sister Pam, Randy and I questioned the medication that she was on and would they stop giving it to her to see if she would improve. They finally agreed and Mom started coming around and between Pam and I staying with her feeding her ensure shakes Mom got stronger. I was able to contact the University of Washington Alzheimer’s Research Center and get the information about a new/old medication that they have been having success in trial studies for patients who get aggressive. They sent me what I needed to get to the doctor for him to try. It was like pulling teeth to get them to even consider. Of course Jan had to be the final say. Jan did finally lift some of the POA restraints and we were able to get information about the meds and care that Mom had been receiving. I asked to look at Mom’s chart and they let me for while and then changed their minds. But during the time that I was able to see them there was a paper in there stating that Jan did indeed have an illegal POA but they were going to abide by it since there wasn’t a current POA. Mom was continuing to get better and Pam and I both needed to get back to work but we were making arrangements to have Mom moved back to Michigan to a facility that does not use chemical restraints or other restraints. On February 16, 2009 Pam and I went to see Mom in Bryan and to have the home fill out medical paper work for the other facility. When we walk into the wing and down the hall we could hear an aid repeat “Sit down Selina” numerous times. We rounded the corner to see Mom trying to stand up and the aid telling her to sit down every time she tried. The annoyed look on Mom’s face was evident. We told the aid that we would walk her. Mom got up on her own looked at us and said “I’m hungry, I’m aggravated and I want to get out of here.” We told her ok lets go she started walking to head down the hall and an aid stopped us and put a helmet on her head. We continued down the hall and Mom walked without us holding her, just her holding my hand lightly. She went booking for the double doors that lead out of there. I got her to stop just before them and enticed her to her room to have some peanut butter and crackers and Pepsi. She stopped and looked at the doors then down the hall toward her room and back again as to contemplate which would be better. She chose to go to her room. She sat in a chair and we fed her peanut butter and crackers and Pepsi. Mom took the cup and drank herself. After we sat and visited and listened to some music. I was sitting on the bed next to her, Pam had stepped out of the room, and Mom started to get up. I was getting up to help her and she told me to sit still. I told her I was going to move so she didn’t trip over my feet and she said she would be fine and I was not to move. So I stayed there and Mom got up and walked by me fine. When Pam and I left that day we were so happy to see her doing so well. She looked rested and she was starting to come back.

On Thursday February 19, 2009, I texted Jan to see if she was home so that I could talk to her about moving Mom to the other facility on Monday. She answered back saying that she was with Mom. I asked how she was doing and she replied not good that she was screaming and hitting and was terrible. I asked if they tried to walk her, maybe get her a Pepsi something to try to calm her down and she said they have tried everything and nothing works she doesn’t know anybody or anything and the new meds I wanted her on aren’t working. I asked about Mom’s eyes because I had noticed that her pupils were so constricted that they would not change in any light. Jan replied that her eyes were fine. I asked if they had given her any psychotic meds and she said not yet but the doctor was going to order them. I begged her to stop it but she was leaving and because she couldn’t take it anymore. Pam and I were on our way at the time. When we arrived Mom was in a recliner slouched to one side with a helmet on her head hollering, eyes shut and barely could talk. She couldn’t stay still and when you touched her you could just feel her muscles shaking. We asked if they had given her anything and when. They had given her Risperdal at 8 that morning because she was getting mean. We asked why didn’t they call us to see if we could get her calmed down, reply Jan has the POA and it’s up to her to call us. Pam and I tried to do everything we could for Mom. We got her up and walked her to her room with the help of the nurse who was not happy that we were there. They sat her in a wheelchair in her room and it was close to supper time. We asked if we could feed her in her room because she wouldn’t open her eyes again and that makes her more agitated with the sounds. They refuse to let us, so we grabbed a bottle of Ensure that we had for Mom and started to give her that. She was so hungry that when we put the straw in her mouth she sucked a half a bottle down in no time. They did finally agree to feed Mom in a corner area where it was quite and Pam sat right there with her and the nurse did get Mom to eat almost all of her meal. We feel that if we weren’t right there that she would have stopped and wouldn’t have fed Mom as much. We tried to get Jan to come down and please stop the psychotic meds but she refused. It was getting time for them to put Mom to bed and they were going to give her more. Pam and I told them that we would take Mom with us and care for her until Monday when she could be at the other facility. We informed them that a POA does not give physical custody over a person and the Jan had obtained it illegally. The nurse was very irate and told us to leave. We help them to get Mom up and take her to her room where they shut the door and left Pam and I in the hallway. We stood out there listening to Mom get upset more and more. They would go in and out of her room but shut the door every time to keep us out. They then called the police to escort us out of the building. When the police officer asked us why we wouldn’t leave we told them that our coats and purses were in Mom’s room and they kept the door shut. We also informed them about the POA and about them drugging her. We were told to get a lawyer. Well we have been trying. There is a Michigan lawyer that is trying to help us but he can’t because Mom is in Ohio. We can’t find an Ohio lawyer that will even try without thousands of dollars and months. Mom doesn’t have months being on those meds. We have explained to them about the POA and that 4 out of 5 children want her out of that facility. Nothing. Pam and I are now banned from seeing our Mom by order of Jan and the nursing home. We will probably not be told if she dies and we will probably not be able to attend her funeral. We don’t want her doped; she was doing so much better. Thursday morning the lady that had shared a room with Mom for the last year died. She was upset and didn’t understand how to express it.

I am so worried and I am contacting anybody that will listen. Please if you can help before they kill Mom please contact me as soon as possible.

Thank you for listening.

Sheryl Stewart

4448 Hudson Rd.

Osseo, MI 49266

517-523-3509 (Home and business number)

517-398-4075 Cell

msspecialty@frontiernet.net

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Sheryl,

My heart is broken for you! I'm so sorry you are going through with this. I know you know the answer. You need to get a lawyer that can help. Since your mom is from Michigan I know that they have to do the medicare paperwork with that state. Perhaps you can find a home near you and talk to them to see what you could do to get her transferred. I would suggest that you and the rest of your family go together and show that it is Jan that is on the other side. There are great homes out there that deal well with Alzheimers. Thorizene is not the answer! They had my grandmother on that for 20 years and she was a zombie! It did horrible things to her body and it took my mother years to wean her off of it. I wonder if you could go to health and human services and get a social worker to help. Just a thought. My grandmother suffered was manic and my mother fought hard to get her out of a state institution in the 60's. Mom got help from her pastor and it took a year but they finally got her released. Hang in there. Hugs and prayers for you!

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Heidi, I have a place for Mom here in Michigan but I don't have POA and I have to have a lawyer that is licensed in Ohio and they want thousands of dollars and they say it will take months and by then Mom will be gone. I am banned from seeing her, if I go to the home I will be arrested.

Thanks for your prayers and I continue to pray for you.

Sheryl

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Sheryl,

Is Jan banned too? If not your only way to help is to work with her somehow. Even if it takes sucking up and not telling her what you really think. If the POA is illegal then I would threaten the nursing home with a suit. There has to be something you can do. Can you go to family court in OH? I just wish I could help you find an answer. Your mom shouldn't have to go through this in the last years of her life and you need to be with her to comfort her. Try getting a pastor there in OH to help, it is worth a shot!

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OK Sheryl, I just typed a long message to you and when I tried to send it I guess I deleted it so I'll try again!!!

In Michigan, there is an organization call MI. Peer review Org. www.mpro.org. They are a non profit that looks into things here. They may know who in Ohio would be similar.

Have you talked to the manager of the home or just the staff. Staff tries to make people think they are the end all but they aren't.

Ohio has to have something equvalient to our Family Independent Agency (formerly Social Services). Elder Abuse is a big deal in all of the US. www.jfs.ohio.gov Go to the right side of the screen under Family and go to protective services. That statement seems to apply.

http://www.ag.state.oh.us/citizen/elderly.asp This article has onfo on "pro bono" lawyers!!!

http://www.eldercareadvocates.com/pages/art15.htm Another org. that has info on elder abuse.

Talk to the Michigan State Police about whether this could qualify as an abduction. Jan's illegal POA might be something they could help with.

Contact the local TV station and see if they're interested in a hot story about elder abuse!!! Might get the attention of the home manager!!!

If I come up with anything else I'll send it but this is a start

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I am sitting here and in total awe....and I have to say my first knee jerk reaction wasn't nice and it wasn't legal.... I don't have any safe for "Jan" answers....and you have gotten advise already for a lawyer...and I agree get an agressive one...its only money, your mother is the important thing here, and if you play your lawyer card right you could own the nursing home she is in.

And when you are finally able to get your mother to a safe enviroment...I then would fix the situation with your sister. She needs to be kicked to the next county. And if she thinks she is getting a Christmas present this year....HUH...I don't think so. I know she is family, and the rule says you have to love family....but in my book you don't have to like her and "like" is a way stronger word than love......

Please know I am here for you, I haven't a clue what to do, I am so in shock, I actually had to leave the computer and come back...still angry for you, but speechless as well.

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Sheryl, I am very sorry for what you are having to deal with. I'm not sure what Jan is thinking--what her motivations are. We had a similar situation with my grandmother. Luckily, I was the POA. Dealing with nursing homes is absolutely exhausting. My brothers and sisters and I were fortunately on the same page, but that didn't prevent the nursing home from doing what they wanted. One of us was there every day and information from the nursing home was always in question. I know drugs are needed in some cases, but this was ridiculous. I finally had enough--I told my brothers and sisters I was moving her into my home (my husband was wonderful about it) and hiring a live in nurse. While that was difficult, I certainly am very glad that I did what I did. In the long run, it was easier to keep an eye on things, and it was definitely better for grandmother. I am sure that it extended her life and definitely she had a better quality life.

Now, all that being said, my suggestion is to get some legal help. Does Michigan have a social services department for senior citizens that you could contact for help? Could you report the nursing home for abuse? Could you somehow talk with your sister Jan and tell her that you know that it has been hard for her to take on this burden and that you and your sister Pam would like to help her. Somehow make nice (even though it would be difficult) and maybe get a joint POA where you and your sister Pam would have more say so and get her moved to another nursing facility that you have checked out and approve of and maybe even move her closer to you. Maybe your sister Jan would go along with that--maybe she is getting tired of the "fight". When you are looking for a lawyer to help you, make sure you find one that is conversant with geriatric law. Also, and this is the biggie--is there any way you could take your mother in until you can find a place that you think would be good for her? It sounds like there is a power struggle on Jan's part and she is not really getting the seriousness of these drugs that are being given to your mother. Sometimes, it is the combination of drugs that causes the combativeness in older people. Good luck to you and let us know how things are going. You and your mother are in my prayers.

I just read the previous posts--the ones above this one that were posted while I was writing this one and Debbie's advice is excellent. I'm glad she knows where you can start. Good Luck and God Bless.

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My problem is that I am in Michigan and Mom is on Ohio. To get an Ohio lawyer to help me is hard. The ones that I have talked to want close to a $8,000 retainer to even consider looking into the case. I don't have that kind of money. Jan on the other hand tells me that I am in denial and that Mom is dying and I just need to let her go. I know better because I have seen her get better only to have them put right back on the psychotic meds. I realize this disease will take my Mom but she doesn't need to be doped.

Debbie, Thank you for those sites and I have been checking into them and trying to get someone to listen. I have contacted the police here in Michigan but they want Mom in MI so that she is a resident of the state. Jan knew what she was doing by putting her into another state. She had help from a local social worker on what to do and that really sucks. This is why I am searching and pleading for a lawyer that has no fear and will really get in there and help, for Mom and every elder person in this world that is being tortured by the psychotic meds.

I will keep all of you updated as much as possible and God bless you all.

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Sheryl,

You might want to contact the OH Alzhimers center and also contact your congressman. Stick to the facts that you believe that your mom was moved out of state using an illegal POA and ask if there is anything they can do to help you. Let them know that you can't afford a lawyer. Another thing to do is to get vocal with the papers and such about how this can happen. Unfortunately you need to get a judge on your side and the only way I know to do that is to go to family court. There just has to be a way. I can't imagine how hard it is to have a sister do this to your mom! Getting your mom back into MI is the answer. I understand from a friend in the area that Sturgis (sp?) has a good Alzhimers unit. Not sure where you would like your mom. Does you sister Jan visit your mom in OH? Is there anybody there at all? Maybe there is another family member that can visit her for you and try to help.

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I am sitting here thinking of all this and I just brought my mother here to MO to live with me because she can not take care of herself and take her medicine right. She is in a Hooveround and can not stand on her own. With other health problems. She recently found out about diabetis. I knew she was hinding things from us that she was not doing on her own. Her diet was not good. I am dealing with this and heard your story and realized that you need to stand up and take charge. Talk to people with knowledge of this and to a lawyer. Do not procastinate it is a short time you have with her and need to act now. Unlike yourself, I have power of Attorney several years in case something happens. That means only while she is alive and can not do for herself, Medically or Paying bills or dealing with legal matters that she can not do. But don't over do it if she can do some. Hope this helps as I am still learning allot by asking questions. Not knowing is hard. Keep us informed.

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Dear L: So sorry to hear of this, I'll be praying for all of you. Went thru a similiar horror years ago in our family, much later found out just how naive many of us had been. Much of what we assumed had been or should have been done in love and concern was done out of pure greed(evil).You may want to take a really hard look at it all. I've never really repaired what happened to our family, just feel at peace now; I know I did all that I could have, Everyone has to live with themselves, just by being as proactive as you can, know that you are doing the best that can be done.

I'm adding a little here, looked on Google to see where Bryan is, very small little town, no teaching MD univ. nearby, really very little support for this type of patient. ? I suspect MI would have had much better resources for your entire family.... I'm sorry it came to this.

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Sheryl, I don't know what to say. If Jan has POA then she has control. I am afraid that if you want to fight this battle it will take a lot of $$ to fight this in court and a long time through the legal court process.

I guess what I am trying to say is to ask yourself this simple "yes or no" question: "If I fight this with a lot of $$, and months of stress is it worth it?"

Otherwise, know that some things may be out of your control to fight over and the most you can do is to pray and hope for the best; try to make some sort of amends with Jan. Remember that Jan holds the key to your mom. If you want to see your mom, you need to rebuild your trust with Jan so you two can talk about the best solution for your mom.

Sheryl, also remember this: You have a husband and children. They are important, too. Remember they need their mom for "themselves" so please don't consume your whole heart, mind and soul to a battle that you probably cannot win. Think of the negative impacts that your fighting and stress will do to your own family...

Weigh everything out. Write out all the pros and cons to fighting this battlle. Talk with your family about this. You and your family can figure this out on if you should fight it or just pray for the best and center your main focus on YOUR own well being, and your family's own well being. They need you, Sheryl, (their wife/mom) to be happy, healthy and focused on them. They need you.

Some things may not be in your control and this situation with your mom might be one of those things. If you feel the need, seek guidance from your priest or pastor, a professional counselor (clinical psycologist) on your grief over this situation. You need to get centered on what is most important that YOU, Sheryl, can control. The things that you can control are YOUR happieness and the safe happy home of your husband and kids. They are #1. Your mom is important, yes.. she is... but you and your immediate family has got to be your priority.

Think about it.

Sending hugs and prayers.

Love,

Shana

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Sheryl,

After reading your post my first reaction was very simiular to Bonnie's. Until you and your other sibblings can get your sister Jan to back off with the POA the only other option you have will be the courts in OHIO. The sooner you start the process to have Jan removed from this situation the better it will be for your mom... there has to be a way to get a lawyer perhaps the other siblings & you could scrap together the $ needed to do so or try a legal aid lawyer.

I don't know if contacting the media or a celeberty will do any good...they tend to go towards the bigger stories, (even though this is huge from your perspective and all of ours as well) perhaps if you could find out if there are other familys going through the same sort of thing with that facility and patient abuse the story would be large enough for the national media to take notice to try to resolve this.

Good luck, stay strong, document everything, and I will be praying for you and your family.

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I received a call from the facility that will take Mom and my e-mail had gotten around to them. They are going to hold Mom's room and willing to help in anyway. I also received another e-mail that they had forwarded mine to the Investigation Dept of CCHR in Los Angeles.

This is getting out there and that is what Mom needs.

Thanks

Sheryl

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Sheryl,

Hiring a lawyer is always expensive. However, in a lot of states, family court or the probate courts handle conservatorships and guardianships. It sounds like your sister has tried to appoint herself as guardian. You may be able to file the papers to go in front of a probate judge who can make an informed decision and appoint guardian ad litum or one of you all as guardian. A lot of times the clerk of court will give you the correct papers to file and you do not have to have an attorney. This may easily call into question the validity of the original POA and if the nursing home knew it was invalid they could be facing a hefty malpractice suit.

Many malpractice lawyers take cases on contingency. Look in the papers for someone in that state that is winning a lot of malpractice cases and give them a call. It is a bit of a back door but may be a different way to proceed.

Best of luck. If you do have to appear in court remember to stay calm and collected and have all of your facts aligned.

Julie

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I have been on the phone for the last 2 days talking to a lot of people. I was able to find out who the county Ombudsmen was and have been talking to her and the one at the state level. I have also been in contact with a nurse representative hired by the corporation that owns the nursing home, they are out of California. The senior center for the city of Bryan has been in contact with me and very sweet and will go see Mom for me. Our local State Representative who we know personally called and is forwarding the information to the Ohio Representative over Bryan and asking him to please look into this matter.

I did get good news from the nurse that is investigating the home, she saw Mom and she said that the aids did have Mom up and walking with help and she was eating good. If they were able to have Mom up and walking then they have to have backed off the meds because Thursday there was no way that she could walk much at all, it was a real chore for us to get her to her room.

Keep praying and I sure do appreciate each and every one of you.

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Sheryl,

I can not imagine what your sister is thinking. I also come from a large family 3 sisters and 2 brothers, my father was in a nursing home and there was alot of conflict. Fortunatuly my mother if alive and was in charge of the situation. My father passed away at the home, where they took very good care of him, he was 87.

I hope that you and your siblings can get this under control. Your sister is not well.

My thoughts and prayers are with your family.

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In Ohio to have guardianship you must be a resident of Ohio. I'm my father's POA & MP ... he lives in Ohio and I live in WV. I can't be his guardian ... that is State Law. My POA & MP were notarized by Chase Bank in Marietta, Ohio.

If I'm unable to continue as his POA & MP he'll become a ward of the State of Ohio. Social Sevices will take it to Court and a lawyer will be assigned by the Court to handle his affairs. Why? My sister does not want the responsiblity of making decisions.

In Ohio you can report anyone to Ohio Social Services .... you don't even have to give your name. That happened to me ... I was accused of stealing my father's money ... my sister and I were investigated. False of course.

In Marietta there is an Elder lawyer, Jonathan Dehmlow jonnyu15@aol.com 740-374-5346 Maybe he can give you a lead. I went to see him for advice ... he charged $188 or something like that.

My father went to the hospital almost 2 weeks ago for chest pains. He was there 4 days .... in the end they restrained him to the bed. Last week I had to have him committed to the Psych Unit at another hospital. He's under the care of a wonderful Psychiatrist. He's been there several times in the last 3 years.

I believe he became dehydrated while in hospital #1 thus leaving him like he is now. He can't walk on his own, lost 4lbs, doesn't know me, combative, eating less than 25% of his food and more. He's much like you describe your mother's actions. Today I had the best news so far in almost 2 weeks .... he talked today and seems to know where he's at. I drove up yesterday to see him but he just had that vacant stare.

He lives at an assisted living establishment, Inn at Marietta. He likes it there, they have lots of activities and outings and the staff is pretty great. They do have an alzheimers unit when he reaches that stage of life. Of course, it's not a nursing home. It is expensive.

I have found when he has an UTI he becomes alot like your mother's actions.

I hope you'll be able to resolve and get your mom home where she belongs. I'm so sorry.

EDIT: Start keeping a journal and write everything down. It will come in handy someday, I promise. It's so easy to forget things or get them mixed up.

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