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I care for my Brother. Recently we had a situation where we were at a friend’s home and he decided he wanted to leave. It was within walking distance to home however I don't think he is safe walking around alone. I insisted he stay, and he got very obstinate, refused to let me drive him home and then insisted he was walking home anyway. I handled it badly but felt I needed to assert myself. Things were said which resulted in my brother slapping me. I need help to become better prepared to handle situations like this moving forward. Are there any books, videos or classes anyone can recommend for me?

There are some forms of dementia where personality changes will happen and a person can become violent.
You might have to accept the fact that you might not be able to keep him home and care for him.
When my Husband was diagnosed with dementia I made safety my number one priority.
I said as long as I was safe caring for him and as long as he was safe with me caring for him I would keep him at home.
What happens if he injures you? Who will care for you, who will care for him while you recover? And while not intentional what happens if he kills you, a push or slap might not mean much but what if you are at the top of the stairs?
You need to start looking at Memory Care facilities.
You also need to discuss this with his doctors. Medication can help but there are medications that would normally be prescribed but can be problematic for people with Lewy Body /Parkinson's so they need to monitor him and prescribe the proper medications.

Just to stress the safety once more. A woman in my support group, her husband had Lewy Body dementia, she awoke one night when her husband had one hand around her neck and was holding a knife with the other. And she has a permanent back injury from when he pushed her into a wall.

A slap might mean nothing but what if you were at the top of a flight of stairs, a slap could kill you or permanently disable you.
Your safety is a priority!
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Reply to Grandma1954
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It might be time to let someone else take care of your brother if there If physical abuse. Or check with doc to see if there isnt a med that can help him stay calm because he is beligerant.
Maybe let him walk home but be behind him even a few feet away to some distance so that there is no fight? Or drive the car slow on the way home and let him walk? I dont know if the reason is because he is unsteady on his feet, or uneven sidewalks, or an elderly man on his own?
You already know that if you stand up to him and tell him hes not going to do something, he will make sure he does it.
Maybe time to look into some help for him. You shouldnt be his punching bag. Sometimes it is better for someone else to do the caring bc family members can cause arguments.
My mom would want to fight with us over control about anything, but turn on the fake charm to any nurse's, doctors, and do whatever they wanted. Its better to be hands off sometimes. Dont allow yourself to be hit. Dont be in hitting distance of him. Good luck.
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Reply to Jasmina
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Adz095. my read from your limited postings is you have a problem beyond communication methods that needs to be addressed first, namely your mindset. Being a care giver to an adult with cognitive issues isn't about being the boss or stepping into an authoritarian parental role or putting a rival in his place. It's about putting their _needs_ before your _wants_ while _always_ continuing to respect the person.

So here's my take on what happened based on the very limited information you provided and my experiences with others in similar situations, which may or may not be very close to what actually happened between you and your brother.

First, you took your brother to a friend's home for a visit which can be a distressing situation for anyone with any type of dementia, especially if there were several people, loud sounds from TV or music playing, or lots of physical movement.

Second, when your brother had all he could take of the environment and _needed_ to leave, you decided you _wanted_ to stay, ignoring your brother's _need_ to escape and deciding you "needed to assert myself".

Third, during the process of asserting yourself, you were tone deaf to your brother's increasing desperation. Did he slap you in response to your emotional and verbal abuse? Did you make a point because his brain isn't working anymore you are in charge now?

Fourth, although you state home was within walking distance instead of being your brother's _advocate_ and meeting his needs by walking home with him (on foot or in trailing car) or asking a friend to walk home with him, you choose to push that his wants and needs didn't matter as much as your desire to extend your visit and "get a handle on this".

All the communication methods in the world won't really help much if you cannot change your mindset. Dementia patients have "broken" brains and will have less and less control of their emotions and actions as the disease progresses. Many people, either because of their own personality or emotional scars from previous family battles cannot deal very well with the dementia person expressing a need to have something right _now_. You have to be able to pull back in a sense and look at what's happening in an objective manner to determine what's really going on as your LO becomes increasing unable to tell you. You have to become the advocate concerned with meeting your brother's needs and not engaged in power trips over who is in control, even if that has been a decades long pattern in your relationship. No one is in control anymore or ever will be; neither your brother nor you. These days the goal is going to be rolling with the punches dementia throws.

If you cannot adjust your attitude, then I strongly suggest you do not continue providing direct care for your brother. Contact the local Area Agency on Aging and request a needs assessment and help finding an appropriate living situation to support your brother. It's okay to not provide direct care giving. You do not "owe" direct care to your brother. It doesn't mean you don't love him or you're a bad sibling or that you cannot be an excellent advocate for his receiving good care. It just means your emotional response to your brother's dementia behavior is more painful than you can handle, a reaction you have only slightly more control over than your brother has over his actions. Please do not blame your brother for his disease; it's just not his fault. Neither are your issues coping with his disease. We can only do our best and sometimes that means turning the direct care over to someone else.
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Reply to TNtechie
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MaryKathleen Dec 23, 2019
You said it perfectly. I thought the same thing. I am not as coherent as you are.
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Like Lea said I don't have the answer either, but I can commiserate too. It is SO difficult when they still want to keep up with the charade of independence (I've been using that phrase a lot lately because of my own frustration), but you see safety issues, a multitude of other things that don't make sense, and then rude and bad behavior.

Happened to me last night. I'm not going to hijack your post with all the details but let's just say my mom became rude, selfish and accusatory and rather than "redirect" I let my frustrated self tell her a few things too. Needless to say I couldn't get out of there fast enough and once again feel depression and dread today. We also had plans for her to come over today, and I hope she cancels.

My only advice is to make a plan to stop being the caregiver, even if that can't happen immediately, and if no other family can or will step in then look into what you have to do for facility placement. Your brother could live a long time, please recognize when you get burn out. I don't know how long you've been doing this but I'm less than 2 years in and I want out.

I think counseling helps. I did a lot of it last summer, and it did help so that might help you. Reading the many, many stories here has helped a lot. In fact I would even say the most. Some people here will resonate with you more than others but in general it's a very caring community with some very wise people who offer help and advice.

Good luck and please come back and let us know how you are doing.
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kdcm1011 Dec 23, 2019
Exhausted, you lasted way longer than I did. Mid-way thru Mom’s dementia struggle, she moved in with us. Lasted less than 2 months, and she had the “sweet version” of dementia!
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IMHO, you cannot nor should not continue with this dynamic. What happens when brother lashes out at you again? Don't put yourself in harm's way.
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Reply to Llamalover47
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I don't have 'the answer' for your question, I just wanted to commiserate with you and say that dementia has GOT to be THE most irritating and frustrating disease I've ever had the misfortune to deal with. My mother is burdened with it, which means I have to deal with her behavior daily, and I handle some situations rather poorly myself. I feel like no matter WHAT I do with my mother, I can't win. If I say black, she says white. If I say stay, she says go. No matter WHAT, I'm saying or doing the wrong thing and we're constantly at odds. I keep my visits pretty brief (she lives in Memory Care) and the phone conversations similarly brief (we speak daily), but even still, it's difficult, to say the least.

Wishing you all the best of luck trying to find your way through the maze known as dementia.
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MARIANNEM Dec 22, 2019
Your point is important here. Memory Care or Assisted Living is the best place for family members who seem to be most ugly to their own family - when suffering from dementia. If the person is indigent, typically Medicaid will step in for a shared apartment. At our facility that looks like a shared living room and bathroom with private bedrooms. They don't act up as much with the care givers.

My mom was also arbitrarily negative - just as you describe - for so many years... I thought we just didn't get along. Now I see that dementia had been creeping up on her for 20 years.

I've got a trick now, since I know she'll say NO first to everything. I say the opposite of what I want her to do.

So if I want her to get up: I'll say do you want to stay sitting in the chair? She says NO! Cool let's get up. Or I want her to eat more: Are you done Mom? NO! Ok then eat.

Me. Tricky.
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From my understanding and I am sure that others will correct me if I am wrong, lewy body dementia is one of the more volatile dementias, meaning that his behavior and aggression will only get worse and that he has shown you that he will get physical I am concerned about your safety.

Have you looked into placing him in a facility that has professional care for this dreadful disease? It may not be time yet, but it will sneak up on you and you want to be prepared for that time.
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Reply to Isthisrealyreal
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"I felt it was time I tried to get a handle on this . . ." I'm sorry , but I don't think you can get a handle on it, especially if you want the handle to be forcing him to do what you feel is right. You can deflect the situation, suggest that he waits for a while and hope he forgets (be sure to give a reason to wait) or, go ahead and you walk/drive him home.
The harder you insist that he does something he does not want to do, the angrier and more forceful he will become. Sometimes you can give choices, 2 at most, that are acceptable to you, but you must present them calmly and be prepared to follow through.
Whatever happens, remember, you cannot get into a power struggle with him, you will lose.
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Reply to mavisgm
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Yes. Look up Teepa Snow on YouTube. Google her for her site and search for her name on this site.
Read everything you can about Alz.
As I’m sure you realize now, you should never ever argue with a person with a broken brain. You seem to take responsibility for the slap but that’s a big indicator that he needs to be evaluated. His meds may not be working for him.
You also should seek counseling for yourself.
It sounds like he was in a fight or flight state.

Has he acted out like this before? I think I wouid call 911 if my loved one acted out like this but learn how to speak to him in a way that soothes his agitation and hopefully you won’t have this problem.
I’ll be honest when you say “assert” yourself that’s a red flag for me. I haven’t had that experience. I’m sure others will be able to offer advice.
I am really glad you have found this site. We learn from one another here.
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Reply to 97yroldmom
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anonymous994237 Dec 19, 2019
Judge much? Thanks for the advice.
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Gosh, just have to add my two cents here. I've been learning about dementia and dealing with my mother for the past two years. Yes I have made mistakes in how I dealt with her initially. But honestly if you want to be successful in dealing with your brother's behavior, you are going to have to drop the hair trigger you seem to have. 97 was trying to help and not judging you. It is absolutely true that arguing with someone with a "broken brain" especially Lewy is not going to work. I learned (the hard way and after research and reading about other's experiences) that a calm manner and voice Always works much much better. I have learned to tame the urge to push back at my mother's crazy behavior. It is a process but I have found more peace with her by being there as a calm understanding presence. I have found that you have to be very creative in dealing with Lewy. Join in his reality. If he needed to leave - then take him home or follow behind to make sure he is ok.
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NorieV Dec 22, 2019
This is just about impossible to do. A calm manner and voice doesn't work, especially when my 89yo Dad with Alzheimer's is yelling, cussing, slashing the air at me, threatening me and demanding I respond. I love my dad but hate his disease. it's been 5 years and I can't take it anymore.
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