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After years of trying to get him go to the doctor my dad was diagnosed with advanced dementia. In April the doctor said he will likely need assisted-living by the summer. The family including him talked about it and he agreed to go into the assisted living center near my house and at least try it for three months. Part of the issue was he was unable to remember to take his medication and we were hoping getting the medication consistently would be helpful. He begrudgingly agreed to do three months. When we began the process he would periodically freak out. Even though he originally picked out a 2 Bedroom Apartment at the senior living center every time he went back to look at it he forgot he had been there before and would get Really angry saying it’s like a prison why are we doing this to him etc. By the time moving in happened he had deteriorated even more. He’s been in there less than two weeks and is so depressed. He absolutely hates it there and wants to move back to his house but literally can’t carry out the smallest tasks anymore. He’s blaming it on the upheaval and I wonder if that could be part of it? Ultimately the issues he was having living at home were manageable if we were to get someone to go to his house and make sure he takes his medication and check on him. It’s just that we had all decided together because of what we know is to come he would move closer to us into the living center that is able to provide different levels of care And we moved forward with that. He has a driving test next week and he will lose his license. There’s a lot of underlying issues that deal with him being triggered with childhood trauma based on living in a facility like that. Within the first week he was absolutely miserable And depressed. One day he said he feels comfortable there and he likes it the next day he is absolutely irate and going downstairs asking the front desk how long is he there for and when can he leave etc. Even though it’s just a senior living facility and they bring you three meals a day snacks and just help him take his medication. I don’t know how to help him understand what’s going on and the reality is that if he really wants to leave there’s nothing we can do to stop him. The reality also is that he lacks the ability to do it. Any insight would be incredibly helpful. Thank you!

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I just looked up the definition of Comprehension;
1. The ability to understand something
2. Inclusion

Inclusion to me is that feeling that you belong.

That will be the aim, as really understanding why he is there may not be possible. (Or maybe is one day, but forgotten the next).

It may take a few months to settle in, for Dad to feel familiar in his new surroundings, to feel his room is familiar, the dining room, the common room, with the staff.

It is a big adjustment for the entire family. Not just the diagnosis, which is a label, mere words, but adjusting to your changing Dad.

Try to celebrate the things he can still do, rather than focus on what he can't. (((Hugs)))
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GardenArtist Jun 2021
Good advice to celebrate what he can do, and focus on the positive.
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Yes, moving can cause the dementia to advance. Moving him back would be moving him twice. Would not undo what has been done. Stopping driving will also be a blow. He may need depression medication to help him adjust. If he is already on an antidepressant, he may need it increased. We recently increased my DH aunts and she is much more pleasant. This is a huge thing he is doing. Not easy. But necessary. I would not encourage him to go back home, it will all have to be done over again with even less ability to adjust.
Watch Teepa Snow videos to see how she teaches caregivers to interact with dementia patients. That might be helpful for you.
You can’t make him understand. If it makes you feel better to discuss it with him, then there is that, but each conversation is complete unto the moment. He won’t retain much if any of it. Keep telling him he is doing great, you are proud of him, you are glad you can stop in to see him, he really likes his new place, you like it too and you know he likes the food and the nice staff. He was so wise to choose such a nice place. Etc. I hope he adjusts soon. I know it feels sad to see him there. I hope you get two positive days in a row very soon.
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Nainoa Jun 2021
Thank you so much
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Please, for his welfare and for the welfare of all of you who love him, stop trying to discuss or reason with him.

It is very possible that your father’s condition has NOT deteriorated, but rather that you are seeing behavior that he was previously trying to conceal from his family. Very few new residents in full time care adjust comfortably after two weeks, and MUCH more time should be given him to adjust before even considering changing in his surroundings again.


”Reasoning” is no longer a function of his brain that is useful for him.

He will NOT be “happy” or “comfortable” or “content”, because his brain is losing more and more ability to work every single day.

Your attempts to “help him understand” are not useful or helpful.

He is NOT being “triggered” by childhood trauma. His behavior is resulting from his dementia tia.

You and your family have lovingly decided that he needs consistent, compassionate care, and you have found a place where care can be provided for him. He may need anti-depressant medication and/or mood stabilizers to get through his adjustment to full time care.

Short visits from family members in very small groups will help his adjustment.
EVERYONE who enters residential care “wants to leave”, but sometimes that is not possible. The “best” thing for someone suffering from dementia is not always something that makes the patient and the whole family “happy” at LEAST NOT AT FIRST.

You have made the BEST decision for your father. Trust yourselves and be at peace that he is now safer, and in a situation where his needs can be monitored consistently.
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Nainoa Jun 2021
Thank you!
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There is no reasoning with someone who has dementia, as "logic doesn't live here anymore"(that's a saying form my local caregivers support group, and it's a good one to keep in mind).
Are any of you POA for your dad? If you are and since he's been diagnosed with dementia, whoever the POA would have the final say as to where dad will end up. Even if dad says he wants to leave, he wouldn't be able to.
Continuing to move him will only confuse him more. He just needs time to adjust to his new living arrangements, and if he needs to be given an antidepressant for his depression, then have the Dr. prescribe it.
I'm sure this is very hard on you, but you must now do what is in the best interest of you dad and his safety. Here's hoping things will calm down for all of you as time goes by.
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Nainoa Jun 2021
Thank you so much for taking the time to give your advice!
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Hi there, I suggest that you check out Teepa Snow on youtube, she has a facebook page with live discussions, and her website...she is pretty much the expert on Dementia (alzhemiers, lewy body etc), I have relied on her information for quite sometime...like my Dad, there is no ability to reason because he can't, his brain is not capable...I listen, tell him I understand his feelings, then redirect him...I think Teepa has a video on youtube, fb page about when patients what to go home etc. Unfortunately from what I understand, moving your Dad home is not a good idea, he will need more care...Dementia is a dying brain, Teepa explained, there will come a point when his brain changes will result in the inability to be mobile, affect his eating and drinking.. Losing his license, will be hard, its the loss of independence...I think Teepa covers this as well, along with communication...Teepa's skills knowledge are my resource to get through this situation with dementia...
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He belongs in memory care, not assisted living.
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Invisible Jun 2021
I remember a man from my father's memory care who belonged in memory care but was physically healthy and relatively young. He was a Vietnam Vet and he was very unhappy. Wanted to be at the VA with his fellow soldiers. He spent his days pacing the hallway from the dining facility back to his room and refused to eat normal meals, preferring PB&J in his room. It was like watching a caged animal.
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I would not use the word "dementia" with your father because of all the negative emotions engaged with the word. I spoke to my parents about specific things they were having trouble doing, like remembering to take medication when needed. We frequently repeated the same conversations because they did not remember the prior conversation where they have agreed to something. I found writing it down and posting it was very beneficial. Some things I "posted" like the new address and telephone numbers when they moved. Some things I wrote into letters, telling them where they were, why they were there, and when I would be back. When my father moved into MC, his letter included all the options I thought he would like: the kitchen that was opened 24/7 and would fix him a snack, the porch with rockers, and the garden he could sit in. I also told him where his clothes and other things were stored in the room, added some simple labels to his dresser, and used clear plastic boxes to store some things he used frequently. Often, if the LO cannot see it, it doesn't exist.

Dementia is very different for each person. What worked in one case may be a complete failure with someone else. I do know that the confusion of a failing mind and loss of memory is universally difficult for the person and their family. The person has difficulty waking in a new place and not recognizing where they are or why they are there. The family has difficulty adjusting to the fact their LO can discuss and agree to a course of action, totally forget about it, and express great anger where the "agreed-upon plan" is implemented. Although intellectually we know our LOs have memory problems, we frequently miss (at least initially) the implications of that loss.
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Nainoa Jun 2021
Thank you for taking the time to give your advice. I’ve done all of the visual representations too but none of it seems to help.
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I usually advise my families that it often takes a minimum of 3 months to adjust to a big change such as entering a facility. The truth is that it’s very possible Dad wouldn’t be able to go back even to the level of function he had 2 weeks ago because of the progression of the disease. Often the routines and familiar surroundings help an individual to disguise their true level of disfunction until the brain gets to the point where no more covering and adjustments can happen. Also keep in mind that families often step in and take care of of some things and don’t realize how much they are truly doing to help the person function. When that support goes away (like when a person goes to a facility or is even hospitalized due to injury or health) the true state of a persons ability and the effect of the progression becomes obvious. Give dad time. He may calm down a bit as he starts to adjust. He also may always want to go home. Tgat can be normal, and it isn’t always the home you think he means. Short-term memory loss and misfiring of signals in the brain can mess with the normal perception of what home means. And by the way, the staff at the facility are acquainted with this behavior. Stop reasoning with a person who is unable to understand or remember logic. Get into his world and react to his feelings. Ask him to tell you what his favorite part of home is. Each person is different and what works will be different. Eventually memory care may be appropriate. Good luck with the transition!
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Grandcaravan Jun 2021
Perceptive explanation! Thx
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Repeat this to yourself every time you are frustrated "My Dad had advance dementia. He can't understand."

There may be many good reasons (your mental health) to explain things to your Dad. His understanding isn't one of them
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The words he uses…saying it feels like a prison, wants to go home, hates it there….is like the dementia record being played by so many who move into a facility. My dad used many of those same phrases. Each move was upsetting to him as he advanced through the levels. It always took at least 3 months to adjust.
Is your dad social? If not it will be harder. By the time my dad decided it wasn’t beneath him to play bingo he looked forward to it every day. He found a group of men to sit with at meals that he enjoyed. Does this facility have activities? If so, can you be there during some of them to encourage his participation. I would often plan my visits to my dad when he was in LTC during a game time like bingo or dominoes and participate with him. Can you visit with the director and have them help get your dad included and also find some men to talk with? Just know what he is going through is typical. They aren’t used to group living first of all, and the new routine and surroundings are difficult with dementia.
Your family made the right decision, try to go with the spirit that he is safe, getting care and having opportunities for socializing. He will want to blame you but you aren’t the bad guy, the brain disease is that made this decision necessary. Know that many of us have been right where you are.
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MHHE1967 Jun 2021
I wish I could be there and participate with my loved one’s activities, but no visitors are permitted past the front parlor because of Covid.
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He should not be in Assisted Living. He should be in Memory Care.
In AL he can walk out the door and no one can really stop him.
In Memory Care the units are typically locked or the residents have on alarms that will go off if they go through a door.
If you get fulltime, round the clock caregivers you could bring him home BUT
Is his house set up for the eventual decline he will have.
Are the halls wide enough for a wheelchair?
Are there stairs that he needs to climb to get into the house, the bedroom?
Are the bathrooms large enough for at least 2 people, a wheelchair or a Hoyer Lift?
Is the shower a walk in shower with no curb? Or can it be changed to accommodate these needs?
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I definitely agree that your father needs to be in memory care. I just went through this with my Mom, and even though she's been there since December, she is still not totally accepting her new home. They are wonderful and so caring with her, but she has Alzheimer's with auditory and visual delusions, and believes that "they want her out of there." We all reassure and redirect her, but each day it is like "groundhog day" because it starts all over again.
My Mom is so advanced in her decline that she doesn't remember how to do much other than get dressed and go to meals. On occassion, she will get her nails manicured and her hair done. The routine there is helpful, and we take her out and visit to keep her engaged with us, family, and friends. She gets very anxious with anything new, so we have to be careful about how long she visits us or we visit her.
I learned here at Agingcare.com that "safety trumps happiness," and it's very true. Every doctor agrees that she needs 24/7 monitoring and I've finally come to terms with it. I don't think she will completely, but at least she now accepts that she lives there. Do what you know in your heart is right for your father, since you now have to make those decisions in his best interest. Best wishes to all who struggle with this.
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What you state is very typical with dementia. The only reason they want to go back home is because home represents a comfortable life that they used to know, when they were healthier and independent. It's not the house, per se, that they wish to return to; it's what it represents to them.

I made a list of all of the things that my father would need to be able to do independently if he were to continue to live alone in his house. I shared the list with him, pointing out that he was no longer able to do any of them or it was unsafe to do many of them.

I agree with some of the others that he really needs memory care this point, rather than AL.

Basically, SAFETY must override his COMFORT.
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Weeroo Jun 2021
"The only reason they want to go back home is because home represents a comfortable life that they used to know, when they were healthier and independent. It's not the house, per se, that they wish to return to; it's what it represents to them."

Thank you for that, best description i have seen yet. helps to understand what it is they REALLY want. You my be able to satisfy the emotional need somehow!

Nainoa sometimes just reminiscing about the complaint will fulfill the emotion they are missing. Like what is it you miss most? And then turn it into a session that will evoke those feelings. By the time you are done he may have forgotten the complaint because you have fulfilled the emotional need for now.
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Your father does not need to comprehend his dementia. He just needs to be in a safe environment. If he is confused and disttaught, it may be time to re-assess the necessary level of care.
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There is really no way to put a "fixed" stamp on dementia and end of life. There cannot be any expectations of success, of acceptance. This is not a good thing that a smiley face sticker can fix the pain of, like a shot for a child. This is a long slow slide with loss after loss after loss, including your mind that would allow you, under normal circumstances, to make sense of.
The important thing is to understand your limitations, get placement, continue to visit, and sympathize with the losses, respond that you understand it is difficult, and that you grieve with the loved one.
I am so sorry. Not everything can be fixed. Not ever situation can have a happy ending. I hope with time there is more adjustment. There may be, there may not. Most elders who act happy are putting a good face on things. For my own bro he said "Well, I can't say I LIKE it, but I tell myself it's like when I was a young man in the army. I don't have to like it, but I have to make the best of it". I was so lucky in that attitude, but he was in the beginnings of his losses, and died before he had to experience each, and I had to witness those losses for him. In many ways I count us the lucky ones in that.
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Im sure it does seem like a prison to him.
If he can, it wojld absolutely be better for him to move back to his home that he is familiar with and let him live what's left of his life where he is most comfortable.
Go thru his meds with his Dr and see what the worst could happen if he stopped taking some. Most Seniors are taking way more meds than needed.
Wold your Dad rather live a little longer life in jail or maybe a little shooter life in his own home?

If your Dad us capable of going to the bathroom and warming up microwave meals, Let him live at home and hire someone to stop by for an hr or two to help out.

You can also install a Nest Camera or two in his home where you can monitor him 24 7 from a laptop or your Cell Phone.
They are easily installed and that's what was done at my Dad's house.

You could put the most important meds in a weekly reminder case and even call him every day and watch while he takes his pills.

Prayers
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Marylepete Jun 2021
There is a point that all of this is our wishes but no longer safe for the person with this disease. And it can all change in a second. Been there, done it and now going through it again.
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I don't think 3 weeks is enough time to adjust so give it more time. However, if his dementia is officially "advanced"... versus mild or moderate... then he really shouldn't be in a regular assisted living place. You should start understanding what is available for memory care near your home. Maybe the place you are at also has memory care. Things can go quickly from advanced to severe and more change and adjustment at that point is very difficult.

I thought dad was good to be in assisted living but he really needed memory care (even though he was much better off initially than the other residents there). He's changed a lot and i'm glad he is at a place that is used to dealing with dementia versus the assisted living place where they really aren't trained for it.
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Give it time, and don't visit too often so he can get into the facility's routine. Before my mom went into a home she would sit on her own sofa in her home of 40 years and say she wanted to go home. So the mind is confused sometimes. Your dad needs to be safe and you need to have peace of mind. Also when you first go to visit, try and watch him from a hidden spot and see how he is interacting with others or what he's doing. My mom would be fine until she seen me and then it was a terrible place that she needed to get out of.
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GET HIM OUT OF THERE ! You can find in home care! If you want to be the caregiver there are also programs to help both you and him financially so he can stay at home. In Wisconsin there is a program called IRIS that can help you with that. But there are programs in every state.

Do not give up on him! I have found out recently that they are discovering methods to help people with many diseases ...including dementia! This does not have to be the end for him. Hang on and bring him home!
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sp19690 Jun 2021
In home care really? He has dementia not a curable disease.

And what are these methods you found to help people with dementia live alone. Please share I am sure everyone here would love access to these miracle advancements only you seem to know about.
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I eventually noticed that my husband with dementia, when presented with something that frustrated him (basically everything), would say, “I’m just not used to it.” Once I really heard this, it made it somewhat easier for me to search for ways to help him “get used to” new things - or to start every conversation with, “Now, I know you’re not used to this yet, but …”. Also, slowing down and giving him time to process each comment — hard for me; helpful for him. I’m still caring for him at home and plan to keep him home as long as I can, so I have no knowledge to share on AL or MC except what I learned while caregiving my Mom through her 90’s. Hope the two small suggestions are useful to someone.
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We were told not to visit for couple months to allow my dad to accept as best possible. Dad was a hard worker and so for a time he assumed he was doing a job there as the handyman would include him in conversations about the building. As time went before COVID he would lash out on being there but we knew like others said the disease is no respect of victims. It was a struggle to come up with answers for his questions at first. Also we opted for lockdown facility and not just an apartment type place as he was very capable of leaving if chance arose. hang in there!
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"He has a driving test next week and he will lose his license."

Your post was 4 days ago, but only showed up for me today. If you haven't had this driving test done yet, I would suggest skipping it. License or not, many with dementia will still attempt to drive. They either forget they've lost it or scoff at it being taken away, as in their mind they are perfectly capable of driving.

The best solution is to be sure he has no access to a car.

He's already upset, so why upset him more? He's suffering the loss of his "home" and this removal of license will just add insult to injury. We took mom's car away. Never had her driving tested and let her keep the license, even after it expired. Doctors were not helpful - only one did anything and that was just to scribble on scrap paper that it wasn't safe for her to drive. She scoffed at it and threw it away. None would contact the DMV. But, even if they did, the problem lies with having access to car and keys. Dementia impacts short term memory, so they forget being told their license is gone, but it also lies to them and makes them think they are fine and capable.

If he's in AL, he may need more care that MC provides. It takes time for all to adjust to the new environment. You have to avoid discussing dementia and other topics that are upsetting. You won't be able to reason with him or convince him anything's wrong. This is his new reality. It's best to acknowledge what you can, fib about going "home" and try to change the subject. If possible, try to get him engaged in activities when you visit. Most places have a calendar of activities, so choose those you think he might engage in, then go with him.

Since his meds are now "managed" by the facility, no need to try devices, but for those in similar circumstances, they have timed locked dispensers that have visual and audible alarms. They can't take doses missed, but you will be aware when you check it/refill it, and they can't take extras. They will only have access to that day/time. Keep the containers either locked up or store them away from their home.
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When we were looking at assisted living, the manager of one place smartly organized a meeting between my father and three other men who already lived there. They couldn't have been nicer to him, encouraging him to come join their group. They were all younger than he was with different reasons for moving there. Some had come from other assisted living places that they just didn't like as much, but the experience of having lived somewhere else helped them define what they were looking for. We all liked the place but a health event ended up forcing us to find a memory care sooner than we had expected. I guess my points are that people DO try out different assisted living places and the welcoming component is important.

There are several technical devices and techniques for reminding a person to take their medications and getting the dosages correct. I did hire someone to provide companion care which included making sure my father ate and took his medications when he lived in the senior apartment before moving into memory care. I moved him to MC when he starting falling.

Put yourself in his shoes and think how upset you would be if someone made you move out of your home. You would have to have the right motivator to make it worthwhile and that might be safety. Or it could be other people. Or it could be fun activities. What can you do to make it feel more like home to him? My father never felt at home in memory care because it was so restrictive and limiting. He was a fitness buff. Postpone it as long as possible.
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Sadly, he will never "comprehend". His brain is broken. His needs will only increase as his condition deteriorates further. And I hope the assisted living where he is also can transition him to memory care. He will adjust but that takes time. You and your family have made the right albeit difficult decision about what is best for your dad. Refocus on selling his house -and car - and using the proceeds to pay for his longterm care and giving him the best, safest rest of his life possible.
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Sadly, there is nothing you can do to help him understand. Perhaps proper medication could "ease his mind" a bit - check that out. Love him and distract him when he starts in But also listen to what he is saying. It is not pleasant living in these facilities and there could be some truth to what he says - then figure out what to do about it. If you have the means to have a caretaker, consider taking him home but what if it does not work out. It will all have to be repeated and then what.
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My dad came to live with me and I could never make him understand why he could not go back home. Eventually he stopped asking 20 times a day. He couldn’t remember a conversation we had 5 minutes ago, or even remember to look at a note I left in plain sight. His doctor put him on an antidepressant which helped him a little with agitation but getting agitated was sort of part of the whole thing. The only thing I could do was develop a lot of patience. Having the doctors report in writing was helpful as sometimes I’d have him read it to see why he had to be with me. But 5 minutes later he couldn’t remember that either so there was just a lot of repeating myself. It was hard for me to fib to him even when I was told it was ok to.
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With your father's dementia - the days of comprehension and understanding are gone - there may be BRIEF times of lucidity but far and in between until they are gone. I'm sorry, but you are expecting too much from your father. He is living in a world his brain has created - what I call "bizzarro world", "alternative universe" or "alternative reality". He will be living in this alternative world for the rest of his life and you will need to learn to visit this world with him occasionally. This alternative world is not static and ever changing while the disease devolves.

Don't even try and make him comprehend or understand; trying to make him understand will only agitate him more. Even if he is lucid - it won't last and he won't remember, you will just end up in a continuous loop of explaining. Instead of explaining tell him that the doc wanted him here until he is better (of course he isn't really going to improve but it is easier to blame the doc).

You all are doing the best you can. I would venture that this was the best of all the other alternatives open to your father and the family. Is your father safe? Is the facility taking care of him. He may not be happy, and yes the move may have made his dementia worse. Know that the question "when can I go home" may be asked a lot. In addition to dr orders, distract him elsewhere.

Learn to pick your battles and unless it involves his safety, learn to go with the flow. Let the small stuff go - and know that now most of it is small stuff.

However, it has only been a short time. Give him time to adjust - No he may never be happy there, but can he be happy anywhere now? Try not to visit too much or take too many phone calls from him. Set up a schedule to visit once a week and talk to him about once a day. This will leave him to rely more on his caregivers, meet others and hopefully participate in activities provided. Stay in contact with the staff to see how his is doing. In the early visits go and accompany him to some activity he may like to get him in the habit of attending activities. Take him treats occasionally. This is a very hard time on everyone concerned; especially on him.

Take it a step at a time and research his dementia to know GENERALLY what to expect and maybe tips to deal with all the new things he will throw at you. And finally, find humor where ever you can. A good sense of humor can make all the difference - I know sometimes you may feel you'll never smile or laugh again. Best of luck to your father and the rest of the family.
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TouchMatters Jun 2021
Thank you for this. So useful, supportive, informative.
I will print it out for future use. Gena / Touch Matters
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Your dad has a form of agnosia - brain damage that causes him to be unable to understand his own condition. Agnosia, his dementia that causes him to forget recent information, and a history of living in a long term residential facility are ramping up fear. His fear lead to agitation and aggressive behavior.

Please talk to his doctor or a geriatric psychiatrist who can prescribe a mild antianxiety medication. The medication will help him to relax until living in his new "home" is more normal for him.
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Imho, since he was just dx'd with advanced dementia, perhaps there is a chance that he will require a higher level of care than what an AL can provide. Also, I was just able to see your post four days after you posted it. That said, if he hasn't already had the driving test, perhaps you should skip it, especially since he will fail. Disable the auto he may try to use BY ANY MEANS POSSIBLE, remove vehicle keys, etc. because even if he does not possess a valid driver's license or auto insurance, be advised that it may not stop him from operating a motor vehicle, where he could kill someone or himself.
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If your father was diagnosed with advanced dementia, the doctor should have found him to be incapacitated and notified the DMV or whomever issues DL. Is there no 'power of attorney' for you father or a trust that stipulates if he becomes incapacitated that the 'success trustee' would be the one who handles his business?
With advanced dementia, I'm not so sure he could check himself out of the facility he is in. Check with the doctor who diagnosed him with advanced dementia and ask him about writing a letter explaining his condition, that way when it comes time to make decisions you will be better off legally. Is there any financial ability to have a home health care nurse stay with him at his house? Good Luck.
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