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I feel like I have told my story a few times that my father recently had to move to NH after APS said that he could no longer live alone. He has lived alone since the passing of his wife in may2012. He had been having dementia episodes for abt 3 years prior to this off and on. Since his hospitalization and move he has had an intense desire to leave the hospital and nursing home. It's his greatest desire and his preoccupation that fills his every waking hour. He improved for a brief time at NH and even during this time all he talked about was being in prison and held against his will. He then took a turn for the worse with a UTI and then severe dehydration. maybe related. He went completely left and got very active about leaving. He would gather his belongings and go to nurses station and say he had been called up to the army. He kept calling me at 4AM telling me this job was finished and he had to get out of the hotel rm. When he got really dehydrated and went really south, he started falling and was very unstable but still insisted on getting up and trying to walk then falling. The NH then said no more and sent him to a hospital to rehydrate him where he continually insisted on trying to get up to pee with a catheter in. All in the world that he wants the most is to leave these places. He acts as though he is being held against his will be evil drs that are doing tests on him for no reason. He doesn't believe anything any dr says even with the results of MRI showing the brain. The NH obviously can't put a CNA on him 1X1 because they have other patients. They are concerned about him falling and the hospital had him restrained with belt across the chest. :( That was hard to see but he had to have it to try to rehydrate him and get him back to health(or try). Last night he called again from the nursing home and said I needed to get up there and get him because they were about the take him to jail. Turns out the nurse tells me that he finally found the door and tried to go out twice yesterday. So, this has to be reported and the next step is the locked part of the facility. My question is A. Has anyone ever had a parent act so badly and desperate about leaving?
B. Does anyone know what these locked units are like and did the patient improve in their elopement or just get locked in and get more miserable than before?
C. I am really confused now about him being in there. I did not think he would be this desperate to leave. I know he is getting better health care and I am one person and have decided that I don't think I can handle him by myself and am not willing to do it since I have other family obligations requiring my presence.

However, I am torn because my sister and I have discussed the options and it seems like letting him go home and most likely go crazy, go into diabetic shock(like before) and kidney failure all alone is one option. The other is to have him in one of these units and at least being cared for. We cannot afford full time care and he is on medicaid now. Is there another option that might work better for him? I cannot picture him in an AL unit since they are not locked and do not have near the level of care he needs. The one I spoke with said that he needed to be on a locked unit and they didn't offer that. I have read some of the postings about patients in AL who left and went into traffic naked. That sounds about like what my dad would do. At one point he was so delusional at his home alone that he went outside at 3AM and was wandering around the yard and wound up at the neighbor's house saying there was someone in his house. He had fallen and had no shoes on. :(
He would also think people were in the other room at his house and talk about them as if they were in the bedroom. He didn't know his wife died at some points.
They have had to put him on all kinds of psych meds just to get him to not be so agitated and angry. They were afraid that he would hit them at first and I don't know that he wouldn't.
I was wondering if he is just going to go down miserable and trapped in what he thinks is a psych ward basically. If the NH can't stop him from falling, will they restrain him? The nurse told me they cannot do that by law. I wonder if removing him and letting him go home with visiting nurses and home health aids would be more humane. Of course I don't think he would last long but that might be better. Oh also, he stopped having an appetite in the NH. He hates the food and probably the dehydration. Any comments or help understanding my next move is really appreciated at this point.

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I spoke to soon. the next day he was back to trying to leave the secure unit. He is right where he belongs. :)
I am focusing on how safe he is and ignoring his antics.
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Thanks everyone. Unbelievable, I have the best news I have had in a while. 2 nights ago the NH called and said that my dad had tried to go out the door 2X. Yesterday they put one of those alarm bracelets on him and in the evening he took it off and they found him sitting on a park bench at the front of the property. He followed someone out because there is a code. He had called my cell phone so many times, I finally just blocked it. I just told myself that he was going to have to get used to living there and it really isn't that bad considering all the problems in the world. I am settled with the fact that he is safe now and not in harms way. I went to visit him in the locked unit and I was anticipating that I would see a psych ward where the patients were restrained but I was quite surprised to find that my father was sitting at the table with a man who talks on and on for hours and your not quite sure what he is saying. My Dad was in very good spirits. He said that he liked these people "over here". I was sort of surprised. He eventually told me " I have made some decisions". When I asked what they were, he said they were his decisions and winked. He was in the common area and watching TV. He seemed very happy and the director of nursing told me that they thought he would do better because there men on this unit who were at about the same level of dementia or worse . It seemed that these people who were a little farther along were more willing to open up and talk to him even though they didn't always make sense. The nurse said that sometimes when patients are surrounded by people who are not in the throes of dementia, it affects them because by contrast they are always trying to act more normal. In my dad's case, he was around ppl that were either close to or worse off than him so he had a sense of "well, at least I still know the time". As ludicrous as it sounds, he was the happiest I have seen him and I also think being behind the locked door took away the scenario of leaving. There seemed to be no more worry about it since the answer is : locked. I don't know but I surely was shocked and SOOOO grateful to see him interacting and settling into a peer group. He always was social and some of the folks said that played dominoes and he does so maybe he will find a new life there. Is that the strangest turn of events you've ever heard of. I was so happy I could leap for joy. I started to understand also that all the belongings I populated his room with were just stressors that made him worry. It was too much for him to have to keep track and keep from being stolen since he is very paranoid about that. I am taking everything home and leaving minimal things there. I want him to have very few decisions to worry about. I sure am learning aLOT! There are people at that nursing home who have their entire rooms decorated like home. In my dad's case, it just caused stress and he will do better with less. Thank you all so much for listening to my story. I must say that I am surprised and happy that he seems to be better. You never know how things are going to turn. I realize this is jist one data point but I needed it right now. :)
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Butterflygrl, My Dad is your Dad's clone. I had to legally aquire a Conservatorship of both him and my Mom.My Dad did the same- I'm going home no matter what behavior for 3 years. Today after finally settling into his fourth residence, he finally acclaimated. It takes time and money. Conservatorship= $6,000.00. Your power to designate where he lives safely priceless.I read you were struggling with humane or not if you pay enough money it is like a resort.
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First Butterflygrl, I am sorry you are so torn about this. I have worked in mental health for many years both in locked and unlocked units. Some are good, some not so much. So visit a few and find one that YOU feel good about.. My mother has to be in a locked unit of the NH . At first she kept trying to get out, they put an alarm on her in one place so that she was free to move around the building, but it would go off if she got within 10 ft of the door. The place she is in now is just locked and these days her disease is such that she does not try anymore. She does complain from time to time and want to go home, but she does not know where that is when asked. I think it is progression of the disease. The NH that she is in is really nice (a place that I would not have a problem being in myself) lots of activities and a beautiful courtyard garden that is secure so you can go outside without supervision. I think the suggestion to ask the doc to look at anxiety meds is an excellent one. Many times just a tweak of medication will help with this behavior. I would also ask about the middle of the night phone calls. Moms place would not allow that unless it was an emergency-and then THEY call. She is free to use the phone at reasonable hours. Mom is in another state so when I go to visit I sit with her 8 plus hours a day and even volunteer to help with activities, so I feel very confident that she is being treated well. Once you feel that your dad has the best possible situation it will be so much easier on you! Hang in there!
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My mother is in a locked facility. There is a NH 25 miles away from me that is a locked facility. They have a code written right there above the door at eye level and not a single resident has tumbled to what is about. It is upside down.
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I had an Uncle who lived alone and could function to some degree on his own. I would go every Sunday and check on him, pay his bills, bring ensure because he was eating so poorly. Then one day he was out and became very confused. Some one called the police and they sent him to the hospital He was evaluated there and they would not release him unless he had 24 hr care and said he needed to be in a locked unit. I ended up finding him a really nice place. They had all kinds of activities, they would go out for rides on a mini bus and he had 3 good meals a day (and snacks). He gained weight and said he really liked his food. But he was always planning his "escape" cause he wanted to go back home. He always told me how he did not like it there. But then I saw him one day really enjoying the live music they were having. I realized what all the nurses there were telling me was true. He only told me he wanted out and how awful it was but at the same time he was safe and he really was enjoying himself. I did become his guardian. I learned to change the direction of the conversation when he would start telling how bad it was there. Although it was a locked unit, it was a very large area that he had freedom to roam around.And they had a nice fenced in yard out side. Unfortunatly my Uncle got pneumonia and an UTI and ended up in the hospital. He did not recover and died about 3 weeks agol Now my mother, (this has nothing to do with the conversation going on) is in intensive care with pneumonia and an uti and is in Intesive Care and probably won't make it. She is my greatest friend.
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It sounds like your father needs medication for his emotional distress. We don't want our loved ones to be medication zombies, but the right antidepressant or antipsychotic can work wonders.

This stage will not last forever. Courage.
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Daughterlinda,
You know what? My mothers name was Linda and she passed from ALS, Lou Gherrigs Disease 11 years ago. I think we have a connection. : )
You are not a horrible person...... You are overwhelmed, I think we all have been there! One thing that makes it easier for me when Dad acted out....It is the disease. My dad is the sweetest, most loving dad and you just have to keep in mind, it is the disease! It is hard and I spend lots of time praying but I love him and would do anything for him. My situation is a little different... But just hang in there..
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Every time you hear him say he wants to go home, translate that in your head to "I want to be who I used to be." That is what he really wants, to be the person he once was. Of course, he can't. I think men especially have a problem with "living past their expiration date" (as a friend of mine once called it). Many women seem to find quality of life by adjusting to their changing, aging selves.
Your dad can't go backwards and he is very far beyond being able to make these hard decisions himself. Locked units are a godsend for those who need them. Visit a few, pick one that takes Medicaid and move forward. Try to keep him out of the hospital at all costs.
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God its so nice to know you are not alone. I have nothing to add to help you. things have continued to get more difficult in my caregiver demands but I know I can do it, because all of you are doing it. thanks for being there and sharing. and thanks for the hugs.
yesterday was not one of our better days. and as a result I yelled at a lot of people. some of them were inappropriate ... some weren't, but I don't like it when I lose control, regardless....
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My heart goes out to you! My dad was in the hospital in Feb for a UTI, Pnemonia. The UTI was treated, never went away....found out it was a "Super Bug" and the nurses had to flush him out 2x daily for a week!! It was horrible, he would jump out of his bed, wonder around at all times. I was scared that the nurses would not get to him fast enough that I stayed with him all night and most of the day.

He was sent to rehab and placed in "Lockdown". When he first arrived he was confused again, the other people in the units came in and did what ever they wanted in dads room. One lady accused dad of stealing her tv. IT WAS HORRIBLE. Yes it is locked but my father was still in his right mind most of the time and he was depressed, and thought he had nothing, everything had been taken away from him. What made it worse was the fact there were only 2 nurses in the entire unit!! We were not told the truth when we visited this home. It is / was horrible!!
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Please, please, please keep in mind that the way your dad is acting out is not your dad, but the disease!
At this point, it sounds like your dad needs to have full time care whether he likes it or not, it's for his own good. It would be irresponsible to take him home, knowing that he cannot care for himself and would likely leave the house and wander.
If you put him in a secure care facility, by law, they cannot restrain anyone.
In regards to your dad's eating, or not eating...possibly that is also part of the disease??
Their appetites aren't what they used to be, they may have a hard time cutting their food, or seeing their fork, he may need help being fed.
I would go over at meal time and see for yourself how he does. Alzheimer's patients forget to eat, and they don't recognize that they are thirsty they don't know when they're hungry or thirsty like you and I do, that's also part of the disease. Which is why he needs full time care where they will help him eat and be sure to have him properly hydrated. But, keep in mind that they also cannot "force" your dad to eat.
My mom has very poor eyesight, her food needs to be cut up and put in a bowl and they usually have to get her started by putting her fork/spoon in her hand and then put the food on to her fork/spoon and put it in her mouth. Then she's usually ok.
It sounds like you're more than overwhelmed, have you attended any support group meetings? The meetings are extremely helpful in that everyone there will have tons of helpful advice.
Good luck!!
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My husband in in a secure facility, I was unable to keep him in our home as he kept trying to leave! Or he would try to call the police and have me removed, he didn't know who I was. This facility is lovely, brand new, but very expensive. But he made the money, so I feel he should be somewhere safe. I visit him every day, and he has improved in some ways.
My heart goes out to you, this is an awful time for you.
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I would ask the doctors to test his urine and do a culture if they haven't done it to check for a more serious UTI that requires IV antibiotics. The elderly pick them up in places like NH's and hospitals.The brief time I spent with my mom in NH's because of rehab they don't give them much water. There's no excuse for him getting dehydrated,in my opinion but I had to beg for them to give mom water during her two week stay, after that I took her home early so she could get her pills on time and adequate nutrition and water. I you visit often maybe you should consider a peg tube to keep him hydrated? You don't have to be on death's door to get one. I got one for my mom and she hasn't been dehydrated since. She get's three 24 oz's of water a day and no tube feed. If I feel she hasn't eaten enough though I will blend something in the vitamix and pour it in the tube, but I prefer she keep the skill of eating as long as possible even if it's pureed., Being dehydrated can be serious in an elderly person and cause him to be confused and fall. He needs lots of water! I would get this all straightened around before he is locked down. My heart breaks for you dad. I am lucky enough to be able to keep mom at home with me. Her check pays for help and if you can get on medicaid they should give you all the help with sitters or aides you need if you bring him home with you. He's afraid and when afraid we all want to go home where we feel safe. My mom lives with me and rarely asked about her home and never did, but once again I've reassured her she's ok as much as she needed it. You have no idea until you have spent two weeks around the clock in a NH to know why no one wants to be there.
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It has been my experience, that even if it was possible for him to move home, he would still "want to go home." That is what is really unnerving. I am afraid these patients are locked in their own mind, some how.
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duhh- sorry for the repeat. refused caregivers.
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Thank you for your response. I am between a rock and hard place. My Dad of course blames me for his plight. He says that because I got involved he is now trapped. How d'ya like that one. I am the only child who would step in and that's what I get. These alternate realities just flip me out. These elderly patients make any number of scenarios that make their children out to be bandits, thieves and opportunists. It's heartbreaking.
To be honest with you, I wax and wane between feeling guilty, grieved and then just over it. I can't believe the narcissistic drama that goes on here. When I look at all the troubles in the world, they don't have it so bad in nursing homes. Sure, you lose your independence but did they think it could go on forever? I just keep trying to tell myself "what would the old Dad say to do if he was in this situation". I asked him one day if he would want Grandma to lay around on the floor and he said no.
I will say that I have been schooled that's for sure. When my aunt got to this condition and was living alone, my father had a lot of criticism for her 2 sons because she would fall and couldn't get back up. She would lay there for hours and hours. Her sons "wouldn't do anything" according to my father(her brother). When they did finally step in, they forced her to go through her belongings and pack 2 suitcases knowing that she would never return. She went to live with them and a short time later, fell in the hosp had a heart attack and died. I was angry at the way they treated her. I think back now and think maybe there was more to the story. Maybe she refused to leave her home. Maybe she refused to leave her home. I think I was too quick to judge and I regret it. I swore to my dad he would never lay on the floor like that. Now that he is fighting me, I wonder.........if I owe my cousins an apology.
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Butterflygirl. My heart goes out to you . My cousins had to deal with this with their uncle. He couldn't stay in just a regular AL or NH. He had to be in a locked unit. Once he got out and had cops chasing him all over town. He ran into a church yelling that he was being kept against his will. Cops couldn't believe this was a man in his 80s (at the time he was phsycally more spry - just out of his mind completely). Cops thought he was in his 50s or something. Right now he's in a locked unit in a memory care and most days he's fine. Good days and bad days but better than having cops chase him @ town.
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You can visit a locked memory unit and see for yourself. I have had friends whose mothers needed a locked facility and fortunately there is a decent one in our area. At this point, the objective of making the person "happy" is futile. So what is the objective? You have to answer that one. My MIL is not as advanced dementia wise as your father, but even an effort to "keep her safe" in her own home is proving unsuccessful. In this case, her dr's opinion is to do our best and just let her do as she pleases until she doesn't know where she is, who she is or who we are and then it doesn't make a difference where she is. Or until she does something that does her in. I am not sure I agree with him. Have the psych meds helped? Does he take an anti anxiety med? Make sure you review his meds because getting the right combination can be tricky and you don't want him over medicated. Although someone posted that Xanax made their mother sleepy. My thought was "what a blessing." Sleepy, not stressed and anxious. Is this a bad thing? I can't believe how consuming this is and really can't believe what caregivers face.
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