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I probably know the answer, I just need to get it out there, and I know I can in this forum.



Mom wants everything RIGHT NOW. I have been at a conference for the last week and was dead tired when I came over to check on her. "Go pick this up!" She broke an appliance and ordered a new one and asked 3 times for my husband and me to go get it and replace it.



I told her no, after what I have been through all week, then coming home to a sick dog, there was no possible way that I was going to drag my half dead you know what across town, pick up her new gadget, put it together, install it, etc. Mind you it's also in the 100's outside today.



When she hears the word no, good Lord does she throw the tantrum to end all tantrums. So I told her, "I am tired, I have a sick animal, this is NOT an emergency. You need to STOP getting so upset (there was a word before upset) over these things." Now she has vascular dementia so that's not going to happen but it WILL be brought to her attention.



She scoffed and she huffed at the fact that I was so tired. "I am too." The woman has THREE caregivers that do everything for her, so you know, it must be exhausting watching all that.



I turned on my heel, said good bye and out the door I went.



The invalidation of my feelings, or needs, has always been a problem but now with her small vessel disease in the brain it is magnified beyond words. However her brain is not so broken that it can't be pointed out that I am dragging, horrendously tired, distressed about the dog, oh, and just recently had a cortisone shot in my shoulder FINALLY after hurting it when I tried to stop her fall earlier this year.



No, mom. Not today.
I always thought those words would never come. But when it comes to a kitchen appliance and the world is going to end if I don't go get it, they are VERY easy to say.

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You did the right thing sayiing good-bye and leaving. Ignore her when she starts up and pay her absolutely no attention whatsoever when the demands and the asinine nonsense start up.
True she has dementia but catering to her and jumping right to it will only make her worse.
As you say she has three caregivers. So her needs are met. The other nonsense should just be ignored.
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Divert, distract, and deflect. She doesn't understand the word, "no" or logic. Try to divert her attention and hopefully she'll forget her demand for a little while. Say, sure Mom, first, let's have a nice cup of tea/coffee, then I'll be happy to do it. You'll have to get creative with your diversion tactics. It's a phase that should pass. Trazadone was a Godsend for me. It kept her calm and less demanding without being groggy. Another post mentioned calling her mother by her name instead of Mom. I did that as well and it really helped me keep my boundaries. Good luck.
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I just want to say thank you to everyone who has commented on my post from last week. I also want to thank you for having my back to the troll who made a very unhelpful comment, no one knows what sparks that kind of behavior but on here it is usually an anomaly because we are all here for support and help. We all hurt, and the only thing I can say about that poster is that hurt people hurt people. Keyboard warriors and all, it was evident that I struck a nerve with that person and they blew up. Who hasn't.

In the week since I posted this, Mom turned up the heat and wanted me to drop everything three times to come over and either bring her something, or show her something on the TV, on the computer, etc. neither one of which she can see or hear well on. Two days after this post she called me on Skype to get her a list at the drug store and bring it across town, a 30 minute drive, on a vacation day I took from work (and everything else). I said, "I am not driving all the way across town for this." This was the first time in 25 years I'd ever said such a thing and I'll be honest, it's like a puppy that scares itself the first time it barks.

Her caregiver for the day, in the background said, "the (same drug store) is just up the street here, I can get it for you." She was absolutely incensed that I said no, but dialed it back when the caregiver said she could do it. "Mom, you can have things in 10 minutes with (caregiver) right there. Why do you need to ask me? You have three wonderful ladies to help you and they love you dearly. Give me this day." Crickets...

Maybe it takes time for her to learn (although it's been nearly two years) what a hired caregiver's capabilities are, or maybe it's just been so automatic that I said 'how high' when she said 'jump' all these years that she expects me to just be the person-that-does-it-all. But when the caregiver showed up with the groceries/items that she wanted, she was like, "oh...there's someone else that can do this?" Maybe there's a learning curve I'll give her that benefit of that doubt. But that's all. Her bills, taxes, vendors, and whatever else get paid by me (by way of her bank account of course) and I keep her lights and gas on, among other things. My husband by the sweat of his brow and vertebrae of his back has also tried to please that woman only to have her come up with more. Enough, is enough.

All I know is that for a woman who demanded so much of me, who cannot demand ANYTHING of me anymore, it's going to take some time... But for me that time is now.

Thank you forum, for hearing me out all these years. I will survive this because of all of you. I pray we all would or did have The Brady Bunch or Leave it to Beaver or Donna Reed show as families. That ain't always the case. What would life be like, if it was.

Your Friend,
MDaughter50
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Oldflgal Sep 2022
I’m right there with you. Please consider it’s the disease of Dementia causing her demanding attitude which is her effort to retain control. The reality is that she hasn’t been in control for years. No need to argue or try to explain this to her as the disease may have progressed enough that she can no longer comprehend any explanation you provide. Explanations tend to confuse my mother now, so I just change the topic of conversation. Keep your shields up to protect your personal time and your health. It’s a long journey.
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I get it. The past relationship with our parents often seeps into our response to their demands of us. I’ve come to see how often times daughters are expected to give in more and whatever little bit the sons do is so wonderful yet my sister and I are only as good as our last time at bat.

My Mom is caring for my blind bed bound Father with dementia at her insistence. But she also needs lots of support and it’s been going on so long. I can sense her decline as well. They are 85 and I’m 63 with health problems, disabled husband, and full time job.

I won’t go into my past details growing up, but my Mother expected me to take on great responsibilities of our household at a very early age and she still wants that from me. I’m not doing it this time. She and Dad refused to look ahead and make smart choices for aging in place. I love them but I don’t want to resent them more than I do already.

So acknowledge your feelings and perhaps do virtual therapy. It really helped me stand up to Mom in a healthy way. Now I won’t have regrets one day yet I’ll have done what is right for all of us.
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MDaughter50 Sep 2022
She and Dad refused to look ahead and make smart choices for aging in place.

THIS.

My mother will often hint at that she thought there would be "people around me," to help her out. Never once giving rise to the fact that burning bridges and bad behavior might have a say in the fact that won't happen.

I am also now dealing with a MIL who has the same issue. "Well, I never THOUGHT I'd get sick," she said when she came to stay with us. Of course no one thinks that. And no one in the world would wish for that. For years she would also tell DH, "I'm fine. I don't need to see the doctor. They only want my money, they are so greedy." She has stage 4 Ovarian now.

I have found a therapist and I will continue to move through life the way I need to - but thank you for mentioning the 'smart choices.' We all need to make them, because it's not up to us 'kids' to make them for our parents.
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You poor thing, you did fine. "Invalidation of feelings', and over your lifetime, that's the key to how you're feeling now. since she'll never acknowledge your feelings, you just have to stand up for yourself, and you did fine. I was always wrong, my feelings never counted for crap, I always had to suck it up. Later in life when I was an adult, if I ever brought anything up that really hurt me when I was a child, my Mom would always say, "Oh that never happened, you're full of it, the other kids don't remember it that way". Fortunately my sister does remember me being the whipping girl for my mother's frustrations, but Mom wouldn't believe her anyway, so why bother.

You walked away and took care of yourself, because no one else is going to stand up for you but you. I tell my grandkids that all the time, stick up for yourself even to me or their parents. No, she's not going to change, this is just her personality. as children we always want to please our parents, and we try and we try, but now you're an adult and you know better. Kudos to you for helping at all, even if she won't appreciate it.
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MDaughter50 Sep 2022
Thank you for this. I have also brought things up and mom will say, "I never said that." Imagine her face when I said, "Then where is coming from? How am I remembering words and phrases and things?" This was before she had the vascular dementia/strokes, etc. She wouldn't outright call me a liar, but she would just continue to deny, and 'I never said/did that.' We all know this behavior. The more I called her out, the less this happened.
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My mom settled down a lot and is much calmer now but my friends mom remains a demanding grumpy old gal. I started saying no to my mom..but by refusing to jump each time she demanded or became needy. I would say we can do that next week or next visit. The neediness drove me crazy! A trick I use to soothe me is I call my mom by her first name {Mary} when I get exhausted with care. It separates me from her being my mom…makes it easier to cope. I do it a lot when I am alone and thinking about her or even when talking to friends. It puts up an emotional barrier. I have learned this lady is in my moms body but NOT really my mom. It took 2 years to get here but I feel better. She is healthy and may live to 100 so I need to get strong. Mom is 89. Good luck!
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Bless your heart, mine is cat food and do we have some cussing dousies over a near outage.
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MDaughter50 Sep 2022
Oh Lord, ask me about, "The Trash Bag Incident of 2020" sometime. No.. just no...
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MDaughter50: Thank goodness that you said "no" to your mother. After my late mother had asked me to remove heavy draperies to take to the dry cleaners, I said "That is not happening as we just had them dry cleaned a month ago." My DH and I never really had a vacation there even though it was supposed to be. We worked our fingers to the virtual bone with my mother's looong to do list for years. It is imperative that you take care of yourself.
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Stop saying “NO”. It’s one of the worst things you can do …I hope this doesn’t sound harsh ( I felt the same way early on ) but after a couple of years for feeling used and abused and treating my man like dirt I started attending CareTakers meetings. I have learned a lot … His brain is broken and it’s not going to get any better … With your mom it will be the same way , She “CAN NOT” change, it is going to be you that has to change the way you interact with her . Some of it is so simple, as I have changed my reaction to HIM the atmosphere has changed dramatically. It might sound strange but the worse he gets the easier it gets to handle him . It took a while before things started to change .
When the answer is a flat NO, I have learned to acknowledge what he said , like . “I know you would love to fly north to attend the school graduation party , we will have to give it some thought .. “ and leave it at that . Things like that .. It might not work with your mom but you never know . There is a list of “ Ten Absolutes” to use when dealing with a Dementia patient. It has really helped me . I got it from my caretakers group . I tried to copy and paste but I wouldn’t work .. Prayers are with you .
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MDaughter50 Sep 2022
I understand what you are saying, and no that does not sound harsh, I get it. If I were to leave something open ended with my mom, she would remember to harp on it until it got done/got her way. Fortunately despite her state of mind, she is oriented, and knows who what where when. She's not really good at how, though, so her planning and execution of things isn't there.

A patient like my mother needs boundaries, so saying no is still at this point truthful and honest with her. If I cannot do something I need to tell her no. With her it won't work if it's a 'yes, I'll let you know," or words to that effect, she has a lot of sharpness when it comes to her needs.
And for some reason most of not all of them still have to be met, by me, despite hired care for her 10 hours a day.
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One other thought. Even though she has three caregivers, it sounds like you are tapped out. It sounds like you need at least a couple of weeks off duty or at least a day or two off duty each week to regenerate your own energy. Is there any way to do that. Local respite care resources? Siblings? Your Mom’s siblings, cousins, friends? Are there any other demands in your life you can lighten up—job, your own home?
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MDaughter50 Sep 2022
The best thing I can do is set up the boundaries. My sisters are in two different states. They do come out on occasion and help but like me they have their own lives -they only have the buffer zone that is distance.

Mom just needs to really learn to ask her caregivers for more -like light grocery shopping or help with a computer here and there - which they are all capable of doing. And, it is up to me to say, "hey mom ask ____ (caregiver) she might know, and you can have it done in minutes." She'll give me the, "Oh, I don't want to ask HER to do THAT," in which case I have told her, "then how's it going to get done?"
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My Dad has a brain injury, not dementia. What your describing reminds me of when my Dad is in a ‘mode’ (my word for it). He gets determined to do something. I’ve found if I can help him do it, it defuses the situation. Relieves something. He needs to act, to move, to do. Then he and I can focus on something else. It’s not really HIM, it’s the brain injury, or the fact that it’s late in the day or lack of fluids.

With your Mom, it sounds like it’s not HER. It’s the dementia. Reasoning, admonishing her, getting upset. She won’t remember—she might remember the emotional hurt.

Deep breath. Time for you.

But when these come up “ sure Mom, I’ll take care of that right away for you.”

Or try creative, “Mom I don’t have enough gas for that trip and the gas stations are all closed. I’ll take care of that for you tomorrow.” “Okay.”

It just depends upon where she’s at with the dementia. Will she accept the creative response or is she still cognitively alert enough to know it’s a fib?

I had a young caregiver who’d worked many years in a retirement home tell my Dad they couldn’t report his missing cattle, because the Sheriff’s office was closed. “We can do it tomorrow.” Dad: “Oh, okay.” By tomorrow, he forgot all about it.

I’ve found there are no resources or support for the ‘incidents.’ I have to figure it out as I go along. I just try to be living and kind. I know it’s not really HIM.
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Keep doing what you’re doing. Give an inch and she’ll take a mile. If my parent pulled that, we’d be gone in a NYC minute.
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Coincidentally, your letter sounds so much like the notes I wrote last night. Only, I'm 72 and the caregiver for my 49-year-old son .... If I only wrote 'my son is a lazy jerk who sits on his butt all day long expecting me to do everything for him' - Oh the awful reaction I would get... but what IF I added...he has advanced Primary Progressive MS. He is basically a quadriplegic, now. He cannot even sit up anymore. He is legally blind. Soon he will have a colostomy...His cognition is declining - I expect his brain will be more like that of someone with dementia.

Reading through comments I can see that others can relate while some cannot.

Some days my once athletic son's demands are unreasonable to lay on me when it is 100 degrees and I can no longer drive - I take the city bus.

None of us in the position of full-time caregivers of loved ones are asking for a "pity party". We only need our feelings of overwhelming exhaustion validated.

I'm a retired RN. No, I am not perfect. But I have a bag of tricks.

1) I write down the problem, much like MDaughter50 wrote.

What words I use aren't professional. It is important to remember that Caregivers are human beings, too. We all have to find a balance. Our loved ones are not going to grow out of it like a baby will.

Writing down the problem gives us time to clear our heads and our emotional buckets instead of overreacting and snapping back.

2) I look at possible causes for the demands.
a) When my son is 'acting like a complete jerk' and I want to run away from home or quit - that is a CLUE that he may be developing a UTI - urinary tract infection.
UTIs are common in the elderly. My son has a neurogenic bowel and bladder. To manage his bladder not being able to empty he has a catheter placed through a permanent hole in his belly. (I'm not suggesting a catheter is an answer for someone with dementia. This is just a medical solution for him that still carries a big risk for bacterial infections to occur.
UTIs can change personalities. They can make people mean.

b) Look for opportunities to make their environment safe, more comfortable, or independent.

*Having your thoughts written down can be an enormous help later when you address your concerns about your parents to the doctor.

Remember, you don't have to pretend to be stoic to the doctor. You don't need to dump everything on the doc either. But, that list can really help you feel and look credibly rational.

3) Setting limits or knowing when to walk away is extremely important for everyone.

Setting a limit is NOT about arguing, or putting mom or adult child in their place. It can be that you may need to "disrupt a behavior" or 'break a pattern" in your reactions. You cannot "fix" the adult with a deteriorating disease. There is NOTHING ideal about caring for a loved one who is losing control of mind/ body.

It is emotionally devastating for caregivers who end up sacrificing normal mental health balance for that loved one.

Please do not shame a caregiver. Please don't let someone shame you.

My expertise is behavior management of children not dementia. But there are similarities that can burn out a caregiver, even the very experienced ones.
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Beatty Sep 2022
Such a well written & insightful reply. Thankyou for sharing WellPreserved. Wishing you a good day today 😊
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I don't get it. Your Mom get very upset when you say NO and there no way around the word so you keep saying the word NO.
------------- Silly Rabbit.
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MDaughter50 Sep 2022
I don’t get it either but she can get as upset as she likes she’s still going to hear it. I’m 3 hours into a migraine and can’t come over today, that didn’t go well but at least I’m beginning to feel better.
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I'm so sorry :( This is a very rough journey to navigate, there is no manual to help us. :(
It sounds like you are in that 'sandwich' generation...full time job, your own family obligations, a pet, along with the extra burden and obligation of trying to care for your Mom. The unfortunate thing about dementia or alzheimer's is that it can be unique to each person that suffers with it and trying to find the right words when you're already exhausted yourself can be very tricky, even when you think you found something that works. It doesn't always work the next time...so you'll need to find and load your arsenal of tricks to be at the ready <3 Finding the 'triggers' can sometimes be easy, but I think as time goes by, you'll be in for more surprises along the way. :(
Please try and understand that your Mom's lashing out at you could be her confusion of not understanding what is going on in her world anymore :( What once made sense to her is getting lost and she's scared...and the only person that she seems to take it out on is you :( Could be her medication (if she's on any) needs adjusting...could be that you'll find that barometric changes or the full moon will also intensify how she reacts to situations. Keeping track of when these outburst seem to be heightened might be helpful, so you can discuss things with her physician.
You also sound like you are experiencing, what is refered to, as 'caregiver burn out' and need to find that pressure release valve. If it's possible to take a weeks vacation, and do something fun...plan a few days away to a retreat of sorts..whatever makes you happy so you can recharge your batteries. And once you are rested you'll be able to create a plan that helps balance your needs and your Mom's care..you'll feel so much better.
I didn't read if you are the only child..are if there are other siblings that could share the load? It sounds like you are doing the best you can, feel good about that..it takes a special person to take on this role. Hopefully, you'll be able to find other sources of help for your Mom...and maybe the next time she needs to order something, *suggest* that she choose to have it delivered, that way she will be able to have it ready for the next step (putting it together, or plugging it in) It may give her a sense of still being able to hang onto something she has control over..and you wont be taking time away from your other obligations by driving to the store to pick something up.

One day, you'll only have memories to look back on...I can only suggest you try and make them happy one's if you can. If she has hobbies she can still do to pass the time. My husband is at end stage Alzheimer's and there have been a lot of peaks and valleys..but now, somewhere in that vacant stare, my husband resides. He too has small vessel cerebrovascular disease, making him more prone to stroke. It's been difficult and times, but we all do the best we can, to help them transition from one phase to the next.

Take care and I wish you all the best in finding that balance.
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MDaughter50 Sep 2022
This is all true, I do wish I could make happier memories but I’m afraid I’ll be left with, “I’ll never forget my mother telling me ________” insert hurtful word here. I do get that things have changed in a scary drastic way for her, and while she is mostly lucid, you would think she’d have some clarity at some point to say, “It can wait til things settle for you,” or, even better, “The caregiver here at the house can do this.”

She tries to get me over to her house every day and it’s not for a visit. “Do this, do that, bring me this, bring me that,” all while the caregiver she hired is standing right there. Thankfully they step in and say, “That’s my job.” She’ll go as far as to say, “No no my daughter can do it.” No no she can’t.

She doesn’t like taking mood stabilizing medication so she won’t even though she’s been counseled on how they would help her. It’s a bad time all around.
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MDaughter, I hear you. My mother wanted everyone to drop everything & get things done for her yesterday. Immediately wasn't fast enough, and she honestly felt entitled to such service, and service with a smile no less! She was always that way, but as she developed dementia, that entitlement issue worsened. She began treating my father like an indentured servant too, although she'd always treated him like garbage. Then when he died, she turned her wrath on me but there was only SO much of it I would take. She continued living in AL after dad died, so many of her demands were met by the staff there, on THEIR timetable, not hers, however. Which I got to hear the complaints about ALL the time, of course. She had no patience to wait one moment for anything.

The invalidation of your feelings is not okay, broken brain or no broken brain. It's very important for you to take care of yourself and your own health issues so that you don't find yourself incapacitated one of these days, God forbid. Learn to say No, as I did. Learn to put yourself first sometimes, and to put mom second. Realize that the earth will still revolve on its axis if she has to wait for something! That her life won't end even though she may tell you otherwise. Know that she can scoff and huff and puff and all the rest of it, but it doesn't really matter. She'll live through THAT too! Learn to tell fiblets when necessary, such as 'the store is closed' or "Best Buy ran out of that appliance" or whatever needs to be said to shut down the conversation at any given moment. Learn to postpone the demands until YOU are ready to address them. Set boundaries and stick to them.

I'm glad you were able to say No mom, not today. You lived through it and so did mom, yay! Keep practicing those words till they roll easily off of your tongue! You'll get to be an expert at it in no time.

Good luck!
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MDaughter50 Sep 2022
Lealonnie I have followed you for a long time and you always have sage words, so thank you for your note. Things are getting easier.

It's never been ok for her to invalidate my feelings. Not on the evening of my first date when I was 16 and she said such mean things to me, not on my graduation day when she yelled at me that morning for no reason, and not when my now husband of almost 30 years proposed to me. "I'll bet you divorce him in two years," she said. Yeah well that didn't happen.

I don't know why I still take care of her on some days but on some days she can be a decent person. I'll get along the best way I can, which is therapy and friends and forums like this.
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This is typical behavior of someone with dementia. Don't take it personally. Also don't expect her to be different. Try not to argue with her (it won't help), and reasoning also doesn't help when a person has dementia. People with dementia lose the ability to think ahead, plan, learn, be empathetic and be patient. That's why they often want things done right away. They are living in the moment. Just calmly tell her that you'll get it for her as soon as you can. She was having a bad day. Maybe it's time for her to stop using kitchen appliances. You'll have to keep an eye on it. My mother, when she was still in independent living put inappropriate things in the microwave and blew it out. At that point, the socialworker there suggested that she go memory care, where they don't have cooking appliances (or sharp objects) in the room. All the best to you both.
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From my experience, yes it does

I am REALLY thinking of standing up for myself and going against these stupid arbitrary rules my mom has created because I am an adult but I dread what her reaction would be

"You did WHAT?!?" she would say

Then she would most likely kick me out of the house and right now I have nowhere else to go

It sucks

I have no real freedom or autonomy

I believe she has early stages of Dementia and she is just getting worse & worse!
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Nanulinda1 Sep 2022
Find a group .. There is help out there for you ! BUT , you have to seek it . Alzheimer’s Association is a great place to find resources. I do my meetings on Zoom . You are not alone. There is a way for a lot of us to maintain a pretty good relationship with our loved ones and keep ourselves sane at the same time . Try to remember if it is dementia, it means her brain is broken. Prayers are with you …
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Wow, our lives are so similar, except my shot was in the knee, no sick dog. My mom has vascular dementia too. The tantrums can be horrendous, but she has always been this way. The times that I threatened to leave have brought a response of either: she stops right away OR tells me "I hate you, I wish you had never been born." Then I leave. Do not reward bad behavior.
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Sounds like you are in dire need of an assistant who can take your place when mom is in need (real or imagined). You also sound like you're in great need of a pampering vacation, maybe in one where you don't have to engage with others. How about a spa resort in Arizona..........go ahead, Google it!

In the meantime, you can interview some, "Visiting Angels" to spend time with mom and help her with her purchases, then you can be her visitor instead of her helper.

When my son needed help with doggie care, he hired helpers from CARE.COM - mostly students, but sometimes retired people.
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MDaughter50 Sep 2022
Oh believe me I scheduled some vacation time.

My mom has 3 caregivers that rotate throughout the week - my sisters and I found them and they are wonderful. Mom is incredibly nice to them. Then there’s Cinderella over here…

I should add that my mom is not like this 100% of the time but she pulls this often. She understands that she has a mild form of dementia but chooses not to believe it. “I don’t think I’m THAT bad.”

She’s pushed many family members away over the years even before illness set in. Now, it’s just magnified her attitude, and being on the defense all the time has exhausted me.
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As it may be, they go back into being a child and dont care...You be strong and know that God is just a prayer away....
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MDaughter50 Sep 2022
He's on speed dial, He knows that. Thanks for your message, it does help.
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Thanks for inviting us all to your pity party! Your mother has dementia. She is not in her right mind. She can not control her reactions. She is no longer capable of reasonable thought. She can not help it! YOU, on the other hand, do not have dementia and ARE capable of controlling your actions and reactions! Did she complain about caring for you as a baby?! Sorry, but I cared for my wonderful parents for years and I know it can be very difficult in so many ways, but now YOU are the ADULT so ACT LIKE ONE! Be grateful for your mother. Be an example for your children if you really are so selfish!
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lkdrymom Sep 2022
I really hope you are a troll. Babies and demented adults are two entirely different things and comparing the two is just plain uninformed.

Whether she can help herself or not does change the end result. Just because she is her parent does not mean the OP has to take the abuse. When you are being abused by someone there is nothing to be grateful for. The selfish one is the elder that expects everyone else to give up their lives so no changes have to be made in theirs. You were lucky that you found purpose in caring for your parents but not everyone else does. What worked in your life does not work for others and that is why they are here. Not to be lectured by a martyr.
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Well, I appreciate your question so much, because the explanation of your frustration verifies exactly why I refuse to take my daughter up on her request that I move 1700 miles and live with her. I would rather tun myself over to the state for care first. At least their care givers go home and don’t feel on duty 24/7.
A possible solution for you would to be order. Schedule a time for things to be done, like Saturday mornings. Be sure that you keep the schedule, because if you don’t, it won’t work.
Make a list and put it on tve refrigerator for her to look at with time, day, date and to be done list, and when she ask again and again, point her to the list. Add things as she needs them.
Her world is changing, but something steady can help her to keep her place. She is scared. When we get old, we lose so much security and stability just because of age, if there is nothing else happening. I am soon to be 89, and my mind is still sharp, but my body unfortunately has many limitations.
Fortunately I have sons, and they work on my lists. For my hands on needs, we hire a care giver to come for a few hours weekly. It’s worth the cost. It’s somehow harder for daughters to not start thinking that they are the parent. My daughter has treated me like I was her misbehaving 3 year old since she was 30, so I thank God for those 1700 miles. Remember this, if you don’t die first, you will get old, and you will need help. Never forget that, and it will make caring much easier. She’s your mother, not your child. Her condition doesn’t change that, but you are now the responsible one. If you have children, they are watching you, and learning how to take care of a parent. God bless you.
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MattyWelch Sep 2022
Wow, great perspective! Exactly, I live with my daughter and her family now (in a mother-in-law apartment, thank God) and I'm only 63. I do a great deal of the "heavy lifting" around here: recycling, washing kids clothes, keeping track of contractors like snow plowing, babysitting several times a week, housekeeping while I'm at "the big house" and whatever 24/7 pet or grandkids care might come up.

This forum is making me realize that I really really need to be looking forward at all times, as I age I have to have a plan in place. I will never be able to afford assisted-living, so I have to eventually find a mobile home in a 55 and over community somewhere, and then eventually go with a nursing home paid for by the state. I don't mind, I don't have a home of my own, and I know what my 98 year old mother is putting everyone through. I don't believe for a moment that my daughter will take care of me. She'll be working full-time regardless, even after the grand kids are grown, and she stresses out at the drop of a hat. No thank you.
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You have to set boundaries that will work for YOU.
If they do not work for her she can hire someone to do what she "needs/wants" done right away.
YOU give her the amount of time and the day that works for you and your family. THEY come first.
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I am 12 going on 70 and have no rights or privacy. But I am trying to not react to the demands and triggers.
Yesterday it was all about buying a golf cart (she can’t drive) and what money she has in the bank (none.) After driving her to golf cart stores around town all day she wanted me to help her on computer to see bank info ( it takes hours because she can’t do tech anymore but insists on doing it herself. I have health issues and had to lay down but no she kept pushing. So I went in my bedroom but she opened door to wake me up about 10 minutes later. I got up and beat her to the computer, wrote down bank balances and went back to bed with locked door this time. She found it locked and flipped out Bang on door, looking for key etc. Later all was fine.
Wasn’t till the next day I figured out why it happened and what I should have done. I should have acknowledged how frustrating it must be not to be able to do the things you used to like driving, using a computer. You’re really tired now which makes the frustration even worse, and all of it hard to understand. Why don’t we both take a break and work on this later.
Not sure it would have worked but would have kept me calmer!
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I’ve learned you ABSOLUTELY have to set boundaries & stick to them (sometimes much harder said then done, believe me). There is nothing wrong with saying no. And you’re not obligated to give an explanation. You are only human. You bleed, you break, you get physically & mentally exhausted. There is nothing wrong with that. I don’t have the luxury of caregivers. I get hospice help with bathing twice a week. 99% of everything else rests with me 24/7. I change pads, deal with potty fiascos, 16 phone calls in a 8 minute period for absolutely nothing important (did I know it’s supposed to rain, another telemarketer called, her eye hurts, her nose itches). Even when you have extra hands, caregiver burnout is real. At the end of the day, there is so much resting on your shoulders between your mom & all her stuff plus your own life. It’s maddening. Sometimes taking a step back -literally & figuratively- goes a long way. In many cases, like mine, your loved one’s dying process is drawn out & dramatic. You feel like there’s no peaceful *anything* about the whole situation & the end will never come. Days seem like weeks or months. Months seem like years. Don’t feel bad about sticking to your limits because honestly everyone has them & going past those limits isn’t healthy for anyone.
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Forgive me for pointing out the obvious that your own responsibilities are about all you can manage, especially in 100 degress weather, and that the word No should no longer be used with your mom. You are an over-and-above kind of person and you're over whipped, coming and going.

If I may suggest, everytime you're stressed, and about to check-in on your mom, imagine yourself appearing before yourself in your most peaceful and in-charge frame of mind (too perfect for even make-up, with your hair moving in a lovely ghostly breeze), acting like a beautiful Stop Sign blocking your way. Take a detour away from her direction, regroup, see her after you've well deservedly collected yourself and feeling 10 ft tall than her.

As you already brilliantly touch on and know, the world won't end. You are more right than you will allow yourself to acknowledge.

Take a day to relax after a hard grind and take care of what's important to you. If you can, go for an easy swim or something else that doesn't require much from you. Drive to a park if only to stare out while sitting on a bench. Peacefully enjoy sweet nothing youtime.

It's difficult to think when you're already spent, tired to death, riled with nothing left to give, and yet your nerves, and an unreasonable sense obligations will push you like a race car forced to take yet another lap (seeing your mom). In such a state self-protective thoughts are hard to come to you. The body and mind will keep speeding forward recklessly from the momentum and going reverse rather than striking a wall is rarely a considered option. Reverse is good and mind blowing.

Everytime your mom, the sad mental blank slate parrot, starts drilling, say; Yes, right away mom, or some other (I know you'll want to gag) affirming pleasantry, and/or walk out. Do what you can when you can.

Part of the problem is that we all, all, think deeply that we need a mother's validation. You were starved and you have to learn, know, understand down to your marrow that it's not "a score" to get validation from a broken person. Stop.

Get a delivery person to install the appliance. If it's not possible, then with your confident head up, and a wonderful "oh-well" breath out, think - "It'll get done. I am reliable. I am a charitable person. I give time, effort and serious concern even when I'm not with her. I am a caregiver."

You are terrific even though there is no appreciation and you feel like you're casting pearls to swine. You're very terrific. Who would do what you do?

Remember you have a reverse gear. Have fun with it.
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Agnes17 Sep 2022
Tks I like your last statement! So true
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"No" is a complete sentence, further explanation is not necessary.

Sorry you are having to deal with this, it is all so hard. And yes, it just gets worse (my experience and still going through it).

Firm boundaries are key. My 85 YO mom in a nursing home now 2 years (dementia and a host of other mental and physical conditions), at first she kept asking for things over and over. Bring this or that, it was never ending: Me: "Mom, I already brought it." Her screaming: "No, you did not bring it. You never do what I tell you. You have to do what I tell you to do!" or Her screaming: "You brought me the wrong sweater, I wanted the blue one. You can never do what I tell you to do." (of course, she asked for the blue one....) Maddening. My solution to NOT bring anything further.....One day, I just said NO, nothing left to bring. Staff tell me if she needs new tops or bottoms, all have to be easy over the head loose tops and pull up type cropped PJ-type bottoms (cannot do zippers, buttons, etc now).

Do what one can to "not take it personal." This one is really hard to do especially if the abusive verbal, victimhood, guilt tripping, patterns were all there well before the dementia diagnosis. Often dementia (they loose their "filter" more and more as the disease progresses) just ramps it all up. Sadly, the abusive pattern (toxic frankly) was my entire childhood (that is another story).

Visit or call when it works for you and set time limits. I initially started with one call every other week and then on the opposite weeks a 30 min visit.

Go low or no contact, if you have to. Part of my low contact in year 2 was to block her number. I had set up her cell w/a picture of me to press to call me years before (oh, why did I do that). She'd press the image over and over all hours of the night. The calls never stopped. So blocking the number was the solution. I can then choose to see if she called (the call does not go through, but she can still leave a message.) Often there is no message, because I think she has forgotten she can leave a message. Sometimes, it is a rant. I look and listen about every 2 weeks. The nursing home will call me if there is "any change in status."

My mom did live with us (my husband and I and our kids) for a long while before the NH placement. We tried to handle it but it was NOT sustainable. She would fall, and I could not get her up. My husband (he has a back back) and I would struggle to get her up. The crazy rants, the nocturnal behavior, the refusal to take Rx meds (because she "didn't have that disease -- diabetes, heart disease, thyroid issues, high cholesterol, arthritis, emphysema). Me: "Yes, mom remember we just saw the pulmonologist for your emphysema and you need to take X." Her screaming: "I don't have that!" -- she's had it for 15 years, 3 pack a day habit since she was 15, only quit when she moved in w/us as that was a requirement -- no smoking allowed in my house.....)

So yes, it just got worse and worse. She is in one of the best nursing homes in our state, hates it and hates me for NOT allowing her back into our house w/the expectation I would handle all her care by myself. She had a bad fall, a collapsed lung, a resistant bacterial and also a fungal infection (IV antibiotics for 8 weeks) and a GI bleed that landed her in the hospital for 2 weeks. Post hospital it was off to a "rehab" hospital because of the IV antibiotics. Thereafter, I said NO to her coming back to our house. Her behavior only got worse and worse towards me. That is 2 years ago now and after going low contact, I am now in full no contact mode. Again, the NH will call if there is a "change in status."
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That is not just the dementia talking, that really part of her real demeanor. My mother was always like that ”well it’s broken, so let’s get it replaced now!” and she particularly wanted things done at her will, cuz she physically felt out of control that she couldn’t do it herself.
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Good learning. Do it sooner and more often when she is difficult, before you get mad. She may learn some control, maybe not. But if you remove herself from her tantrums, it will help you stay sane. However, when she is pleasanter, shower her with attention. Even one cell organisms can learn from basic reinforcement. Try and keep things as calm or brief as possible. It would be useful for the caretakers as well when it is safe to remove themselves from silly behavior- briefly.
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