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Just my two cents on answering the "I want to go home" requests. In my case, my mother has no concept of time so she thinks every day is Wednesday. I tell her she will be going home next Saturday or that she has a doctor's appointment first. She doesn't ask when, just, "oh, I need to stay for that?" I say yes and that's it for an hour or so. Some days it doesn't come back up, others it comes up again and again. She's happier thinking it will be soon. I don't know where your dad is on this scale but practicing "therapeutic lying" or simply giving truths that lead nowhere helps me a lot. She always has another Dr. appointment in the future, she is 81 year old so I just tell her she has one in a couple of weeks, more than likely she will.
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VPCA721 Aug 5, 2023
That is a wonderful answer. It is so true. With the Alzheimer’s, my mom doesn’t know her days of the week or time of day. My mother lives with us and is always saying she wants to go back to California… we live, in CA. She always wants to go home. I will need to try this approach. Thank you
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It took about 6 months for my mother to settle into her new nursing home. We were fraught with guilt the entire time. I visited every day to help her adjust and I’d come away with a pressure headache each time. But I still went. The idea of leaving her alone there was too painful for me and it made the guilt worse. She was incredibly anxious and clutching at us every day. Her doctor put her in anti depressants and we started to notice an improvement within a few weeks. Things are much, much better now. We’ve also hired a private caregiver for two afternoons a week to give us time out. i know how difficult it is. Hang in there
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CPB1987: Many individuals with dementia who reside in facilities hang onto the 'I want to go home' story. However, many times their brain malfunction has them believing the 'home' is one that they lived in as a child or a much younger person. Any brick and mortar structure may no longer exist. Give your father some more time to adjust and yes, you can cut your visits down since you know that he is in good hands.
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Yes, it is okay not to visit. However, I would not take your kids on any more visits until his incessant behavior diminishes.

When I'm around this type of behavior, it takes all of my wits and focus to deal with it in a compassionate manner. I don't really like the the fibs as I can never tell if my Mom will remember or not. In addition, I was never good at "small talk".

A friend had a schizophrenic brother who was 2 years older than he. He remembered his brother before the diagnosis and got along well with him before and after. One thing he told me was to just keep on asking questions and talking, therefore entering their reality and that you, are a visitor and need their guidance.

Therefore, I would tell your Dad that "yes, they are spies. They are watching what he eats to ensure he is well fed and watch what he is doing because they are figuring out how to join him." Explore those emotions with him. When he says that he is as fit as a horse, ask him "how does he keep so fit?" In other words, enter his reality with a lot of curiosity (and chuckle or laugh if you are at loss for words or the idea is so absurd.) There is no need to promise anything (say "I don't know if I can do that"), nor to directly answer his questions. When my mother asks if I hear voices, I say "no, I don't hear voices" if they are no external voices. When she asks again, I say "no, what are they saying?" When my nieces came to visit my Mom, she constantly asked when they would be back (yes, even on the first day). They answered "this year" or told her a specific month, the current month.

I cannot do this type of thinking if there are other people in the room. It takes all my energy to "play the game".

So if you are looking for permission to see your Dad less, yes it is okay to see him less. However, for me, I find it easier to go alone and make more visits but keep them short (if I don't have the patience that day, the visit has been less than 10 minutes).

About visiting, the reason why I like to do the frequent visits is to stay on top of what is going on. For instance, I see the nurses each day. If my Mom has a genuine gripe about something, I can usually follow up on it immediately. My Mom loves food, so I bring her a little "healthy" snack every day. Right now, it is watermelon. In fact, I won't listen to any of her gripes until after the snack; many times, she switches over to "happy" subjects after the "snack".

However, for you, I suspect, you will need to hear him out or get past this phase first. Whichever way you want to do it, it will work. The point is that you are making the effort to visit with him and for that, you should be proud of yourself.
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No, I don’t think it is ok to not visit. Would you want that if you were in the same situation? All these people saying it is ok blows my mind. It’s not like this is N indefinite thing. He’ll die. Not going because you don’t want to see it is one of the worst excuses I hear from people. What comes around, goes around.
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anonymous1732518 Aug 6, 2023
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I think it is important to visit. When I’m doing my one month taking care of my parents I try to go every day. I think it is important for him to know his family is still here for him, he wasn’t discarded and he is loved.

It took a few months for my father to adjust but he’s doing better now. I don’t like going, it is depressing but I suck it up.
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I think everyone is different on what they can tolerate in terms of visiting a parent with dementia. Also some people are closer by to their parent making it easier to visit regularly especially in a major metropolitan area with a lot of traffic. I decided to take a break of a month from visiting my mother. All the stress of the hospital trips for my mother and sadness I feel at the memory care facility was causing problems for me including performance at work and in general not taking care of myself. Some people can deal with it more and some cant. Everyone is different mentally and fortunately society is getting better at recognizing and accepting the importance of mental health of an individual.
The staff at the place where she is know and like her and I know she is getting good care where she is but of course I still feel guilty about not visiting for a while.
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stop being scared and visit your dad. He needs you and familiarity. If you love your dad and he was a good dad then this is your duty. This is part of his life with you in it. No Regrets! This is also a learning experience for your children---you showing them what you are doing and how you handle things and them learning about their grandfather with this disease. This will make you all stronger in the end.
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I would consider going alone. That way you are still showing your love - even if he is less capable of appreciating it and hopefully you will have no regrets when the end comes. As for the kids, they are kids, not an adult like you are. As such, they do not have the maturity and life experience to understand and be exposed to this kind of thing every time you visit. Take them occasionally if you want, but maybe do most of the visits on your own.
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I visit as often as I can mentally handle it. Sometimes once a week but sometimes once a month. It depends how much energy I have after dealing with work and kids. I do the best I can and realize I am not perfect and neither is m mother.

my suggestion is to get the neuropsychiatrist involved and see about altering medication. It made a huge difference for my mom without making her a zombie. Find a doctor who will take it slow and not overmedicate. She no longer thinks people are poisoning her food or plotting against her. Huge relief

good luck and don’t let anyone shame you into doing more than what you can handle.
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You're looking for validation? You know you have the answer. It's painful, heartbreaking and it leaves you lifeless. Go when you have the strength and go by yourself. It's really hard to humor people in that condition, I told Mom last night she confused me too much and I had to hang up, hurts badly. She's bedridden and has been talking to the science museum about a 16 foot fish in her freezer and she was working with crepe paper ( not there) and she wanted to find pictures of the family that were lost in a fire 50 years ago!?!?!? How do you come to terms with this?
It sounds political when he talks about conspiracy,too much news??? I'm not saying that it doesn't happen, government hides lots. How old is your father? Could be in the era of JFK? If so, there's so much going on back then. He's probably wanting some validation himself? Maybe he needs to get something off his chest that no one took time to listen to? Listen and respect his eagerness to tell you. There's a reason why they go there,I don't know why. Bits and pieces of memory they try to hold on to and they don't intend to hurt, but it does. I wish my father would have told me more, left me to find out everything he had going on about taking care of Mom. Take this as an opportunity to talk to him before he can't communicate fully. Hey Dad, what's up? So many memories of my father leaving with no information on his finances. Go see him and try to ignore the stories. Just, now and then, they are coherent and want you to hear. Be strong! You can find the strength to do it. He might just be trying to help you in the only way he can. It's hard to understand but if you really know him, you can figure it out. He's trying to tell you something,I feel it. Time has no meaning, he's not in the current year. Ask him what year is it? If it's this year? No more News! Mom thinks it's 2003? What year is he in? Go back and live in his shoes. Whatever year he says it is, is where you can reach him! Tell him you are there and you won't let those people hurt him! No conspiracy! You have his back! I'm trying to prove 50 years later there's no information of what she wants. Don't hurt, try to help him.
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<3<3<3 I am so sorry your going through this. It is ok to stop visiting him. It is ok to honor your own needs. Visiting him is clearly very upsetting to you and seems to agitate your dad because he doesn't understand. You are still a good, kind and loving daughter and human if you stop visiting. If stopping visiting is to hard you can start by just going less. It's ok, it doesn't make you a bad person or a bad daughter.

My sister completely cut my mom off shortly after my mom was diagnosed with stage 4 lung cancer that spread to her spine and brain and left her paralyzed from the waist down. She did what was best for her. She is living her own life. Nobody had to understand why. People will always have opinions about everything you do. Do what is best for you. Doing what is best for you is also what is best for your children and family. Honor yourself. It's ok. <3 I truly hope this helps you <3
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our situations are so very similar, along with the paranoia that the facility is trying to drug him, he doesn’t trust the nurses or caretakers. It’s the “prison”. I have limited myself to once a week. It seemed that my visits didn’t help and he just complains to us. I want to give him time to settle in and get used to this new home without me or my brothers being distractions and also thinking we might take him home. I may then go to every 10 days then every two weeks. We’ll see how it goes.
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My situation is similar. I never foresaw my mom in any sort of care facility, but here we are. She was fine at an Assisted Living facility I found for her, and then she tried to run and I was given notice that she had to move, and then a day or two after getting that notice, she assaulted a nurse while she was running again and I was told she could not come back. I had no time to break her in to the idea of a new facility - it just suddenly was. In fact during the disturbance she created, the responding police officer only released her to my care if I promised to keep her in my direct control until I got her somewhere secure. So we wound up in a memory care unit 30 miles from my home. I railroaded her through admissions while my husband and son packed her stuff and brought it to the new place. From assault to new digs was about 10 hours.

The next day Hubs and I went back to finish getting her settled in and she sat by the only door out of her room and glared at me and dared us to leave her there again. She smashed a picture I was trying to hang and shrieked at me for staining her white bedspread when I laid her clothes to be hung on it. At one point, she dragged a sweet little lady from the common area to her room to show us that "SEE? This is what they do to people here. This woman was perfectly normal a week ago and now she's an idiot." We finally gave up for the day and managed to sneak out the door, but she caught up with us and followed to the locking doors and wedged herself into the door as we were leaving. I had to go back in and lure her in and wait for a nurse to distract her so I could quickly exit, but I had to listen to her banging on the locked door behind me and screaming.

I could not make myself go back the next day, despite feeling like I should. I felt horrible for leaving her, horrible for not loving her enough to take her home with us, horrible for her circumstance, horrible for what she was putting my family through. I called the MC to check on her and a kind nurse assured me that although she was a little worse than most, they all go through this and they all settle down. She told me I was doing the right thing by staying away, that she would begin to rely on them instead of me.

The next time I went about four days later, I checked in before I went on the unit and they assured me she had settled down and was doing well. I picked up two fresh hot cookies from the lobby and went to her room and gave her a cookie. When she thought I made it, she loved it, but when I told her they had them in the lobby, she threw hers against the wall and knocked mine out of my hand - claiming they use cookies to poison people into submission. As soon as I was there, she flew back into defensive mode and pulled out all the stops to get me to take her home. It was like I had triggered her fight or flight reflex.

The first two months were hell. Pure hell. I visited her at least once a week and I never knew what I would face when I got there, but it likely wouldn't be easy. But then she started settling down. They got her med mix right and the staff really knew how to deal with dementia patients. They went slow and easy winning her over and during that time, I realized I did not have to go every week. It didn't seem like I was making more than an "in the moment" difference (and not always good), so I could take time for myself to take care of myself. I've settled in to a once every two weeks schedule, unless something happens and I go immediately (i.e. a fall). She seems to cycle through paranoia and rage and calm and happiness, but 10 months in, none of the stops on the cycle are too extreme.

When I saw her last, she had found a boyfriend and he was all she could talk about. I just wonder if he is real or not, but I ain't gonna probe too deeply to find out!
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anonymous1732518 Aug 7, 2023
She sounds like a hoot.

Good for her

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I recently put mom into MC. She did not want to go, but she had no choice. With her advance dementia, a recent pulmonary embolism, she could not live alone any more. It was very helpful the doctor put his foot down.

I was trying to visit mom once a week (after 3 week of settling in) she I moved her to me much closure to me. While at MC, I would get reports, picture, videos how well she is doing. Except when I visit her. She would dump on me with both barrels and she HAS TO GO HOME. I keep explaining to her the truth she cannot live alone anymore, and she gives me all the reason why that is not true. After the visit, I would use the car to let go of my emotions. This was very hard on me, but I do want visit her, but the emotional unloading of my mom just hurts, and leaves me depress.

On the last visit, I had my wife visit mom. She did not recognize her. After talking awhile she kind of remember her. She talked about how the place she was staying at was very clean and the people friendly, and she believe she will have to stay there for while. To my wife she seem happy and doing well.

I know mom is well taken care of. She is enjoying her activities. She has put a little weight back on. The best of all she is safe, and seems happy except around me.

I fully understand your feeling and how you are torn between doing the visit and not wanting to go....

PS Keep us up to date on your progress.
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Your father is experiencing agitation and anxiety because the world doesn't make sense to him. Try to talk to his doctor about his symptoms and see if you can get him prescriptions for medications to help calm him. Then, your visits will be more enjoyable for all.
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anonymous1732518 Aug 8, 2023
Subtle way of saying keep him doped up.

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Of course you love your dad. It's not him that's doing this, of course, it's that horrible disease. But if he still had all his capabilities, do you really think he'd want to put you through the visits you're having? It's ok to take a break. Or you can do quick check-ins at a time when he's going to be busy, like at meals or activities, so you can slide out. And you don't have to take the kids if it's going to create bad memories for them about their grandfather. Maybe talk to his provider about medicating for the delusions if they seem to keep him upset (for his peace of mind).
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My Mother has been in a nursing home for over two years. She has dementia. She wants to go home too. But I have come to the conclusion that the home she is talking about isn't the same one I am thinking of. I now believe that home to her is a better place. Home with the love ones that have gone before her and a home where she can have peace and not suffer with this disease. Because just like your Dad she doesn't remember her actual home. With dementia you start grieving at the onset, as you lose your loved one a little at a time. Don't stop visiting. You will want to be at peace when your father passes knowing you did all you could and you were there for him. I will be honest and say it really doesn't get easier, but you will get tougher. Find joy in what you can and learn to laugh when you want to cry. Take good notes, because we may be there some day too.
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MargaretMcKen Aug 13, 2023
A lovely reply
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