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?
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.
I do not have experience with a parent with Alzheimer’s. My godmother had ALZ and she was a challenge long before she had ALZ. She ended up in a nursing home where I would visit her.
Stick around because many people will have good advice for you.
This is a question, not a criticism: why did you insist that he stay? Has he up until recently allowed himself to be persuaded in situations like this one, has something changed in his behaviour?
Wishing you all the best of luck trying to find your way through the maze known as dementia.
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.
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.
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!
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.
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.
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.
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.
Caregivers Guide to Lewy Body Dementia