Dad's progressed to the point he needs a secured unit. Has anyone else had to go this far? - AgingCare.com

Dad's progressed to the point he needs a secured unit. Has anyone else had to go this far?

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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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