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I'd to hear from caregivers caring for someone with acquired brain injury and/or dementia. What are the biggest challenges for you in terms of your loved one's behavior? What do you need help with to effectively manage the behavior?

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My FIL moved in with us 3 months ago. He had a brain aneurysm almost 8 years ago. His wife passed away a year ago from the same issue. He still thinks she is alive. He does not believe me when I tell him that she passed away. So I have to go through that whole story every other day. His short term memory is gone! He has no concept of what day it is or what time it is. (Even though we have clocks everywhere)! His mind generally lives about 30 to 40 years ago.

It is so frustrating that he does not take care of basic hygiene. If I didn't tell him to take a shower, he never would take one on his own. He refuses to take his meds because he insists that he took them an hour ago. (He NEVER takes his pills on his own). He sleeps most of the day (side affects from his meds) and gets up at all different hours of the early am. I need my sleep! He wakes us up every night. It is a different hour every day, never the same sleep schedule for him.

He does not want to listen to me or my husband because we are kids in his eyes and he is the adult. It is very frustrating! Sometimes we play along with his stories, but that can backfire. He wants to go to work at the hospital and insists that we take him there. So, I end up telling him the truth and then he sits and stews over it for an hour or so. I just wish he would respect our judgement and, no offense, do what we say. It is for his own good and safety.

Sorry, I don't have any tricks that work. I am still learning how to take care of this stubborn guy.
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Been there worried 13! I feel your pain. Or waking me up at 3am insisting we have a meeting to go to!
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Hardest for me.. hum.. gotta be waking up (3am, checked her at midnight was awake but settled) to a naked, wet screaming grannie that has both legs thru the bedrails when she as of Dec 17 2016 ( stroke) when she can't move the left side at all, dementia strikes bam left side works.
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I think the hardest for me is the peeing and pooping wherever it is convenient for him. I tried crime scene tape over my bathtub since I like Epsom salt baths but he just switched to the fireplace which is very, very porous. And all the toilet paper clogging up the toilet. I try to hang around and monitor, then he gets mad at me for not giving him privacy.
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The hardest part I have experienced is when people first meet or speak with my husband they do not know he has a cognative disorder....it creates problems. I get suckered in thinking that we are having a"lucid normal" moment until I later learn that is not the case. Most of his unlogical unrational thinking involves financial matters. Be alert at all times and don't try to have logical conversations. Keep it light.
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People with dementia get as bored as we do if there is no plan for activities for them. Any adult day care near your home? One with planned activities during the day?
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I'm in agreement with the people who site the inability to reason - that coupled with extreme stubbornness. My mom was always very stubborn- no one told her what to do! Once the dementia had shifted into second gear she became an immovable brick wall. So - mom would do things that were just nuts and totally unlike her "old self". I would try and talk to her - use reason and common sense to try to get her to change her behavior or a wild idea she got in her head - she would fire back with some off the wall, nonsensical reply - and I would again, try to get her to be reasonable. It was the proverbial "beating your head against a brick wall". And of course, the more I tried - the deeper she dug in, sometime even taking the behavior or notion one step further. The hard part for me was finally accepting that this previously smart, smart woman was no longer able to have intelligent thought or reason. Once I accepted that - which took learning about the disease- things became just the tiniest bit easier.
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My wife was diagnosed with Alzheimer's in 2010. Helplessness falls over her when she occationally realizes that something has changed--is different--she can't remember or do or read or do art work or play the piano the way she did in the past--what ever that is to her now.
So, I try to distract her with comments about her pretty hair ,how the neighbors asked how she felt, would she like to go for a drive, would she like something to eat--milkshake. If distraction does not work then I have to resort to sitting down with her, rubbing her arm and back, saying we are buddies --in-this together- and we will get through it as a team. She will eventually cry herself to sleep if that does not work. That is truly the hardest and saddest moment for me when I cannot change her perception of herself in those moments.
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This may seem crazy but there is an exercise machine that is motorized. The reason why a motorized type is best is because the person will stay on it longer because they aren't doing the actual work. For some reason, unknown by myself, exercise helps the brain to send signals around the blockages. If that makes any sense.

After my husband uses this type of exercise machine, he seems to mentally come alive. It can either be a bike type where they peddle but at the same time the hand holds are moving forward and back. The one I like is the pushing of the feet and the handles are moving forward and back. The movement of the machine challenges the brain to think it out ...I guess.

The goal is 45 mins, 5 days a week. I've seen the mental difference in my husband after using the machine.
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My mother in law who has dementia lives with us. There are a host of issues to deal with as a family. She is incontinent,paces all day long,has lost the need for hygiene,and is fixated with the kitchen. We have tried to explain to her she needs to wash her hands after using the bathroom . She doesn't believe there is a need. This leads to the kitchen where she is constantly wanting to handle silverware,plates,glasses,etc. If it isn't that it is her version of washing dishes which consists of rubbing food residue off and running under cool water ,and putting them away. We have given her projects to keep her busy,but she puts them down and heads to the kitchen . Then she starts asking what do you want me to do over and over. She has asked this question on some nights at dinner upwards of fifty times. I have asked her why and she says you didn't give me the answer I wanted to I keep asking. We ask her to not do or handle any dishes or silverware. The minute we turn away she is into it. When we ask her to stop she gets angry and storms out. Five minutes later she is back in the kitchen not remembering a thing that happened and the questioning starts again what do you want me to do. We are all stressed out as we are her sole caregivers. My wife has a brother here who has no contact with his mother and another who is only around on weekends. The second brother will take his mother out to give us a brief respite. We don't know where to turn.
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Everything is a challenge! I spend so much time researching this dreaded disease to find out all suggestions may work today but tomorrow is a different story.. As everyone said "no reasoning skills"..

I find what I call depression the most challenging.. Because it's a domino effect.. Her unwillingness to do any activity results in depression, anxiety, shadowing, Sundowner's, sleeplessness which in her case results in panic attacks. Everything I read says to avoid argument so I just stop pushing activities.. So everyday is the "woo is see" syndrome..

So as I stated it's all a challenge..And I never know if I'm making the right decisions.. I'm not a doctor and I don't want to be one! LOL
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Soozie, you have described my MIL to a "T". Wow..... Though a person who would meet them for a few minutes would think they are competent.
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Norestforweary - you hit the nail on the head. There is absolutely no reasoning with someone with dementia. Mom is incompetent in a hundred ways and we could never trust her to make a decision, balance a checkbook, remember what she did 5 minutes ago. But to her mind she is in complete control of her faculties, and the truth (to her) is anything she wants it to be. There is NO reasoning with her, five minutes later she wouldn't remember it. And she can lie better than any three year old - she is quick to come up with the answer and lie and believes it herself. Its heartbreaking because it isn't like dealing with a three year old you can distract and finally put your foot down. You are dealing with a mentally ill adult who was once intelligent, and retains some of those abilities.
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typo correction: up and *down* the stairs...
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btw, the diversionary tactic i used recently, was to first, step away briefly to get a breather, went back and collected our dishes (we were eating dinner), then suggested we walk up and the stairs for exercise (indoor stairways that she won't traverse without someone being there with her). after a couple of "rounds" she's back to "normal"--the happy-go-lucky mom living for the moment.
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when she accuses my husband or my sister of things they so obviously didn't do. the latest is that my husband meets with gangsters in our basement to do who knows what. using advice from other threads about dealing with the dementia, i'm now able to deflect her train of thoughts but i can't help but try to defend my husband and sister first before having to use the diversionary tactics because it's so unfair to them AND mom to think this way but of course, defending them is an exercise in futility, stupid even, because it just gets her more riled up than the accusations she makes.
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I agree with what captain and norest wrote -- obsessive delusions are the hardest. They want us to do something to solve a problem that doesn't really exist, and they often do dangerous or expensive things to deal with it themselves. Then there is the anger when we don't fix the problem. It is strange how someone can forget most things, but remember a made-up reality for years.
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I guess its thinking the old him is trapped in there somewhere. That and the fact he would rather walk around without pants...at all... twig and berries in the breeze... urine dribbling down the cabinet and across the floor... that might be another one I really hate.
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Thank you for the replies.
What have you all tried that has helped, and what have you tried that's made things worse?
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The hardest part is trying to reason with someone about the behaviour. You can't reason with them. The brain is not wired like it used to be. If they are doing something which endangers them, sometimes you do have to intervene. This causes much stress! I
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for me it was the accompany-ing ocd. in their simplicity they see no reason why they cant sit on their behinds and use your energies to make the world a flawless place. their obsessing over what aint gonna happen can put some real tension on the household.
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I am looking after my MIL with dementia, her complete lack of judgment keeps surprising me, recently she was out standing in the driveway because her healthcare aide got lost and after she gave her directions she thought she would wait for her, she is in a rural area and it was very very cold, she could barely walk, yet there she was, far away from anyone, wearing light clothing, early in the morning, out there in the ice and snow, it just boggles my mind.
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For me, mom is in the mild/moderate stages of her VaD (Vascular Dementia) so we are just beginning to trek up that mountain.
Right now, I would say it's the repetitive nature of our conversations. I know it doesn't seem like much; she's not soiling herself, she's not babbling into the wind... she's not roaming the street at night...but... I'm not used to it yet, I guess. Maybe that's why it comes in stages; so the caregivers can get "used" to it as it progresses...
Today mom and I were... wait for it..... you guessed it... Shopping!
And she mentioned 3x in one hour that she liked a particular item (pillow! candleholder! rug!) all because they are her favorite color and she kept saying I like that color, it's my favorite color. I love the color...
It may not seem like much, but compile that with asking the same questions and forgetting the same explanations about the same stuff on the same day...
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They are not the same person. Some days they hate you.
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