Why is it when I’ve totally decided to put my Dad in AL because of his dementia and his constant need for me to do everything for him he acts like a normal person?

jacobsonbob - I only just saw your message to me (and anyone else it applies to) - it might work for someone who has just started doing these behaviors. In our mom's case, learning something new was an issue around the same time sort term memory started going. She probably would not have remembered to look for the check list much less use it. She used to live by her calendar - always on the table, always with chicken scratches (her handwriting became worse than it ever was), but several times, months before we moved her, I found it buried in the pile of newspapers stacked on the footstool. I would put it back in the kitchen and on the next trip it would be buried again. So, that most likely would not work.
Another example - she hasn't used any kind of walker, but finally told the MC staff that she wanted one of those. She kept the two my dad used, a regular rollator and the kind with a seat, basket and brakes, so during one of the condo clean up trips (still not done) I brought those here. When I heard she asked for it, I brought it up. It sits in her room, unused... it isn't like it can be hidden either... oh well!

I'm sure your dad will settle in, Vickie. Give it some time.

Thank you all for your answers. I put my Dad in AL 2 weeks ago.
The last week he was at home with me was so all consuming! I knew I could not take care of him any longer. He wanted to go to an AL that was near where he live. It’s a little over an hour to get
there for me but I thought he would be happier there. It has been
emotional for me. After you get to rest, you wonder if you should have tried a little harder and been more understanding. I really
like the AL and there are only 21 residents so I think he will get
get comfortable with everyone. He does still sound very confused
when I talked to him on the phone. I want him to be happy. He
never seems to be happy, not even when he was living here. I don’t think there is any good answers for people with dementia.
It’s so hard on them and the family.

disgustedtoo (and anyone else for whom this is relevant)--If you have someone with OCD who goes through a lot of "rituals" and repeats them, I wonder if it would be helpful to print a sheet listing them (or perhaps just the "important" ones) with a column for each day and a box to check it off. If the LO could be persuaded to use this and check off each item, maybe it would eliminate the "need" to redo each step.

Vickie,
Your profile indicates dad lives in your home - is this true? If so it will be more difficult, but set limits on what help you will provide. Meals, medication management, laundry, the usual things we all need, and possibly some help with ADLs, if he really needs it. If he lives in his own place, check into hiring assistance for these tasks (include cleaning the home, etc) - locking pill dispensers can be used and the person coming to assist him in his home can check to ensure medications are taken for the day.

We did try the home aides with our mother, but never got past a few months, one hour/day, mainly to check on her and her meds. Then she refused to let them in, so that ended the attempt to keep her in her own home. There was no way for me to physically care for her, one brother is still working and has no room for her, the other is 2 days away and neither would have a clue how to deal with someone who has dementia! They both heard the first place we checked quote a monthly cost and immediately said hey, for that price I'll take care of her! I knew (researched as it began and progressed) and tried to explain this is not like our parents and mom's sisters taking care of our grandmother - she did not have dementia!!

Although we do not know your father or see his behavior, I can say yes, sometimes they can pull themselves together and appear to be okay. Despite that ability, it is clear to anyone who sees this person on a regular basis that this is a sham. Our mother used to go to all the AL free lunches with my younger brother years ago. When it was approaching that time we felt the need to move her, she was adamant that she was fine, independent, etc and refused to move anywhere. When going to the doctor she put up a stink when told it wasn't safe for her to live alone!

There is also the question of whether his behavior changes later afternoon/early evening. If he becomes more agitated or demanding at those times, then as others suggested this could be sundowning. It manifests in different ways for different people, but clearly occurs at that time. For our mother, with cameras in place, her OCD showed up around the time she would get ready for bed. She was living alone, but what started as occasional repetitions became nightly marathons - check the door lock, sidelights, into the kitchen area, light on, light off, back to the LR, light on/off, aaaaand repeat... Turns out the kitchen check was the dishwasher. The camera did not record that far and we only found out what she was doing there when the long-distance brother was visiting. That became 1-1.5 hours of repetition. Again, this sundowning can manifest in many ways, but if behavior changes later in the day or at night, yes, that's what it is. If he lives with you, the only thing that might work is redirecting him - change his focus or attention onto something he likes to do. It is not always possible to accomplish, but you can try.

So, hopefully by now (it was a month ago you posted your questions) you have a better idea of what to do. If not, try setting the limits and see how it goes. Do not try to reason or argue with him, it is a futile battle! Stick to what YOU decide you can do to assist him and if he cannot or will not do the other things on his own, it is likely time to throw in the towel and find a place for him. No guilt trips, we are all only human and can only take so much. Some have more patience and can deal with this, some will likely end up with health issues of their own if they try to go this alone! Take care and let us know how things have been and what you decide.

Soninlaw58

I'll tell you what Moms neurologist said. If they were nice before they will be wit Dementia. If they were mean before, they will be with dementia. If they were nice before but mean with Dementia...They were actually mean before just knew how to cover it up. Sounds like you have set borders because just like a child if they can manipulate they will. Respect goes both ways.

Vickie, I had my dad home with me for almost a year. My mom had taken care of him all their lives. She was the narcissist and controlled him and tried to control everyone else, right down to telling to eat his peas during dinner. My dad did not know how to make a simple decision, yet, this will sound odd, he was very independent. So when he came to live with me, he expected me to care for him at the same level my mom did. Meal preps, cleaning up after him and spending time just sitting and listening to him. With a farm to run, that wasn't possible. It was taking it's toll on me and my husband. My husband kept saying the same things, your dad knows what he is doing, but I still believe, he was just used to the habit of being totally cared for and someone being there to do everything for him. Around 10 months into the caregiving I realized, I was mad all the time. I had to make a change. My dad has dementia, but I found a wonderful AL facility that caters to the dementia patient and the house he is in, is also for incontinence, which had also become an issue. We moved him there about a year ago and that was not without it's own challenges. However, after months of guilt and adjustment, I am happy to see my dad and he is happy to see me and our visits are as they should be. Good luck!

Vickie, you have made me think more about my difficult father. I would guess that your father was not ‘torturing’ you, just getting the best possible service until that looked like back-firing. My own father treated AL as subsidised hotel accommodation, and had tricked ‘respite’ care in many states for years. You have known your father for a long time: would he have manipulated situations in the past to get his own way? If so, your husband may be right, and this is just a new game. If not, perhaps you think again. Either way, look after yourself, your husband and your own life.

not necessarily. my aunt practically burned her apartment trying to use the stove - but when "tested" she always proved normal.

a nurse friend stepped in and as a favor to her, she arranged a different doctor who found my aunt to be incompetent.

you can fool all the people some of the time....

My 83 yr old mother in law lives with us and while once a very sweet lady, she's become hateful and does her best to control us, treating us like a couple of 8 year olds who are her personal servants. But that's just around my wife and I. If there's someone else around, she can turn it off and be her old pleasant self. Asks the same questions every 10 mins and constantly says she's run out of money (no where near the truth). I've had to almost quit saying anything to her as she'd twist it around and start a fight with my wife over something she decided I'd said when I hadn't.   

When confronted with her atrocious behavior, her stock response is "I don't remember" as if that excuses everything.  Another response was "I must have been asleep" when she was definitely wide awake when it was happening.  After I casually said that someone who does things in their sleep like that would be a danger to themselves and others, she quit using that one.  

Fun and games in dementia land.

Vickie5297: IMHO, I believe that your father is "acting," i.e. portraying the role of an actor when and if it suits him. So now he suddenly becomes "an upstanding citizen/human being when he is told he will have to go to the AL?" Your husband is spot on correct.

Vickie, it may not be dementia. My very difficult father was in AL half way around the world - difficult to visit! He was quite clearly game playing, (and had been doing it for decades) but he had acted it for so long that it had become difficult for him to shake sometimes. He actually forgot that I knew the old reality, and you could see the shock on his face when I called it. The AL Director was really relieved to hear that her suspicions were probably correct. Don't get run around by a game player, look after yourself.

Someone with dementia is sick and they certainly don't want to be this way. My brother and I are trying to do the best for our mother as long as we can, hopefully till the end. But we never know. It is one of the most difficult and tiring things but our mom was ALWAYS there for us. Some days better than others. Easier said than done but remember the person being taken care of is suffering greatly, too.

It's difficult for both the older person and the caretaker to realize that the older person is truly disabled, and the caretaker doesn't have enough resources to care for their loved one. Even if you keep your father at home, it's likely that he will become agitated and worried at night. I cared for my husband at home while he was on Hospice care. I gave him a whistle to blow when he needed help since he was in the other room at night before I joined him. He kept calling every 15 minutes for help getting to sleep. I loved him very very much and didn't realize that his agitation was a sign of an aging brain--rather than a result of realistic concerns about not being able to get to sleep on time. This night time agitation is called "sundowning" and is quite common among aging and demented persons. I would like you to recognize that your father's complaints do not necessarily mean that he is uncared for--by either you are the AL staff. Your question seems to indicate that you wonder if your father is healthy enough to be cared for at home. The answer is that dementia will progress, and you are not Wonder Woman. We all hope that our loved ones will appreciate our sacrifices and be thankful to accept what we can give them. Eventually we will run out of resources, but this is not our fault! Even if our loved ones are begging for more care, that might just indicate that they are scared/upset/demented. I honor your efforts and sacrifices to care for your father and wish you well.

AL is not just for Dementia/Alz residents. There comes a time when AL no longer have the resources to care for them. AL have residents that still drive. They have transportation for outings, shopping and appts. So even if he is "playing" you it may be a good place for him if he can afford it. It will be nicer for you too.

Sunnygirl1 has a point. Dementia isn’t a linear progression always. It’s possible that on some level he is relieved that you are taking control and getting him the care he needs. Maybe... My parents were so against assisted living. Now that mom is there she hasn’t had a single complaint. However, due to her dementia she behaves grumpy and cranky and is sometimes obstinate with the caregivers. Dementia is weird. Do what is best for him given his diagnosis and then get some support in a group or therapy to process any lingering guilt and anger.

Vickie 5297, if he is "playing games" with you, then you should make the joke "on him" if possible; that is, if he pretended to have dementia, then you treat him as such by placing him in AL and then you are no longer required to put up with his game at home. (If his goal IS to be placed elsewhere, then you will have given him what he wants.) If it turns out he really has dementia, then you will have put him where he needs to be. Life can be complicated enough without someone deliberately making it more so.

If your father has been diagnosed with dementia, then, I don't think that he playing you or it's his way of getting back at you. People who have dementia may be rude, negative, unappreciative, demanding and even seemingly manipulative, but, that is irrelevant, because they also have brain damage and need to be protected and cared for.

And, people with dementia may seem better on some days than others. That's quite common, but, they still have the condition and it still means that they are very ill. I think that since the damage is in the brain, we sometimes don't appreciate how real it is, like it would be if it were a mangled leg or broken arm.

I recall back when my LO first started acting odd. She was quite demanding and wanted to lie in bed and have diaper changes. I was dumbfounded, since, there was no reason for this. I couldn't figure it out. It wasn't until her dementia progressed, that it all made since. I wish that I had seen what was really going on, at the time. Even her healthcare workers didn't recognize it. They just though that she was lazy, since she was relatively young at the time.  

I have a father who is 87 with Dementia he lived with us for 9 months and I had to decide between my husband and my father. Well I sided with my husband and put dad in a really nice home in Assisted Living. He has a really nice apartment an the nurses are really great with him. My problem is that he doesn't trust them and he is so worried that they won't give him his drugs right. He calls us at 6 p.m. every night and asks when is he getting his night insulin and he gets it at 7:30 he calls every 15 min. When he goes to the doctor he fights with me and the last time I walked out and went and talked to the head nurse. When I walked in I told him that I don't have to listen to this I'm not a child and I don't live in your house anymore. I told him that I was 60 and I was trying my best to make sure that he was being taken care of. You see I had to retire from my job that I loved to do so that I could handle my dad. I couldn't concentrate with him calling 10x a day. I needed to work 2 more years to reach 62. Now that I have retired I am so busy trying to disperse everything that him and mom had in there home. I do dads wash and pick up behind him. I am there almost every other day. Now dad has fallen 2x yesterday and he calls me last night and asking why haven't I come and see how he was doing? I told him that the head nurse called me and said that they had checked him out and he was ok. The last time he did this he was at home and he was dehydrated they told him that he needs to drink a lot of water and protein drinks. We told him last night to drink water and the protein drinks. I wish dad would just trust them and go do things with them he has been there since Feb of last year. Thank goodness mom took out Long Term Health Ins but you have to have someone to fight for the person due to they turn you down the first time you apply, and then you have to pay the full price for the first 90 days. Lets just say he has me all stressed out and thank goodness my doctor has given me a anxiety pill to take to help me to handle all of this. I also have a half sister that is here and a half brother out of state but I have to contact him so he calls his dad. Which I think really sucks.

Or perhaps he really was showing serious signs of dementia and needs AL. No one really wants to go live there willingly. I imagine his better behavior is intended to convince you to keep him home. Don't do it - move him on out, but don't use your family money to pay, use his. If he lacks funds, then he needs to be elsewhere where he cannot abuse you or your children.

My dad hid his dementia very very well. It wasn't until there was an incident that made everything change. He knew something was going on, he simply didn't want to have to leave his house. It wasn't malicious necessarily, he was just really scared. Once he was moved, it required some adjustment, yet everything is much better now.
And for me, I have team around me, instead of just myself.
All the best to you!!

tiger, I hope you will do just that - get support, someone to help you get a clear view and plan for where you’re at! vickie, maybe your dad’s playing you, or maybe he’s just compensating to protect himself... in either event, sounds like the best approach is to get out from under taking constant care of him.  In other words, even if you don’t go full AL just yet, do not turn back now and keep up the status quo.  Good luck!

I have a husband who acts exactly like that, and being a caregiver to my father who lives with us, as well,makes it that much harder to deal with. I am thinking of seeking counseling for myself, as I find I need to find some sort of peace to go on!

I think it doesn't matter why this behavior is happening. It is toxic for you. Bow out.

He sounds like a narcissist and basically they are very nasty people. Know all the manipulative trickery - about all you can do is refuse to play in their sandbox. Take care of yourself - you can be sure your dad will take care of himself just fine. Some people are too toxic to be around.