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My Mom lives with me & my very supportive partner. My mom was a really great mother, super sweet & caring until my dad passed. I have 1 sister, somehow I became the scapegoat. She is 94 & mostly mean now, she has a lot of memory problems. I get her meds, make her food, take her to all her docs & appts, keep her company & help her in every possible way. I am blamed for everything. She talks smack about me behind my back to my sister. I am by nature an optimist, but the mean talk & blame gets so bad that I am constantly upset. I get that sometimes when someone has dementia they can take it out on their caregiver, but it's out of control. I also resent my sister for not sticking up for me & for not being more involved with the care of my mom. She could easily share the responsibility, but won't.
I think it makes it worse, because I remember how sweet my mom used to be & I don't know this mean person who took over her body. If I stand up for myself & say something like “ you hurt my feelings when you talk about me like that” she will go into hysterics & say I am causing her to feel ill or will lock her door & then blame it all on me to my sister. I find myself dreading to be with her & then feel guilty. It's very sad & I'm unsure of how to handle it?

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I feel for you. It’s very hard to be a caregiver. It’s hard to have issues with siblings.

Many others on this site have either been through it or going through it.

We can’t control anyone else’s behavior. I’m sure that you know this already.

All we can do is change our reaction to it, at least at some point in time.

Of course, it’s normal to honor our feelings.

I would never expect someone not to feel their pain. That’s impossible!

All I am saying is that we can’t remain stuck and stagnate.

We are designed to grow and learn from our experiences in life, and many of our life situations are painful.

It’s easy to become frozen in our thoughts and it’s very difficult to push forward towards viable solutions and healing.

It’s a process that can take awhile to sort out.

Best wishes to you and your family.
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I’m know it must be very stressful, difficult and exhausting considering all that you are doing. Maybe, your sister sees this and does not believe it is something she wants to take on. Hands on caregiving is not for everyone. Caregiving comes in different forms. Some family members feel they are able to be more vibrant and present for their LO who needs care, if they allow professionals to provide daily care and they show up to visit, talk, bring flowers, treats, and provide emotional support. Doing everything 24/7 would be very all encompassing. Is there any way you could get some outside help? I’d also explore other options like Memory Care. You can check into getting respite care for a week or two. You might feel better and renewed strength if you can get some rest and be free from caregiving for a couple of weeks.

It’s difficult to remember that dementia changes who the LO is and it’s dementia that is causing her to make false accusations or be mean to you. If your sister doesn’t understand this, I would consider getting her a book about dementia that explains how it manifests itself.

I hope you find some things that help,
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Dementia can change a person to the point where the only option is placement in Memory Care Assisted Living. My mother is also 94 with moderately advanced dementia and such a difficult personality that there is no way I would care for her at home. She has way too many mobility and incontinence issues as well so memory care is the only option for her. Even with her living there, she blames me for everything and carries on something fierce, it's awful. I can't imagine dealing with it at home with no escape.

Please look into getting paid help to come into your home, your sister to help out, or placement for mother. And stop feeling guilty! Who would welcome being treated badly, especially when they're devoting themselves to caregiving??? Being old and demented does not give your mother or mine a free pass to be mean and miserable all the time! Don't buy into that nonsense and figure out how to care for YOU and your partner before you find yourselves in despair while your mother goes about her merry way! It's vital to get a break and find time for yourselves away from the toxic waste! Give yourself permission to do that, Ok?

Good luck!
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This is not a healthy situation for anyone to live in. The mother you once knew is gone, and will probably not ever return. She can't help it though as her brain is broken. However that doesn't mean that you have to take it. On the contrary. You have other solutions than keeping her living with you. I would start looking now for the appropriate facility to place her in, where she will receive that 24/7 care she needs, and you can get back to being the optimistic person you once were. You deserve that much.
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You aren't going to change your mother and you aren't going to change your sister. The only one you can change is you.

So...do you want to change? You know you don't have to be the fulltime caregiver for your mother. It seems to be affecting your health.

Have you considered a facility for your mother? If not, then why not?
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Sounds like your sister has backed away for good reason. No one deserves to be emotionally abused, no matter what’s causing it. Please look out for your own health and mental well being and find an appropriate place for mom to live, it’s no one’s fault that her dementia has made her care more than one person can handle, but it’s time for professional care
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Thank you for all of your suggestions, I am going to get someone in to help,
after a bad marriage & an illness of mine, my mom let me live with her till I got on my feet ( & she cared for me when I was very ill & also my young child, while she was also taking care of her parent at home)
I guess I thought the least I could do is repay some of what she selflessly did,
i think getting someone to help inside the home ,is a good starting point ,
this experience has made me think about what will happen , if this would happen to me, my gosh it’s
not a good thought,
when I was a child, my grandparents
lived in the same house , I wonder if that also has something to do with
trying To keep my mom in the house, I ve seen my mom take care of her parents , we ( our family) all
helped out
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disgustedtoo Apr 2021
Hiring someone to help will take some of the drudgery off your shoulders. It may also redirect some of her anger towards the aide. Any GOOD aide will know this and be able to shrug it off. Be sure to find someone who has experience with dementia. Mom's income should be paying for this, not you!

It is admirable for you to try to follow family "traditions", such as caring for those who came before us. Sadly it isn't always the same. Most likely there aren't a lot of extended family living with you, to share the chores.

My grandmother did not have dementia, so it was easier for mom and her sisters to share her care. She also passed before she was 80, relieving them of this duty BEFORE their retirement years! If my mother had been more like that, without dementia, it's much more likely that one or more of us may have been able to care for her in our places OR she would have accepted help in her own place. I tried to keep her in her own place longer by starting aides, only 1 hr/day, to get her used to having them. She didn't need much help at the time, so it was more to get them in the door and provide a sanity check for me (I live 1.5 hrs from where she was, so daily checks were out of the question.) Sadly this didn't last 2 months. Dementia does lie to the person who has it. Their self-image is NOT consistent with current reality. She insisted that she was fine, independent and could cook. She wasn't and couldn't. After taking the car away, the inability to cook became apparent. Taking care of finances was the first thing to go, as I could see the mistakes she was making. Other than those issues, she should have been able to remain in her place longer with help. A timed/locked med dispenser was set up to ensure she didn't miss them or take too many. The aides could check and point out any missed (they aren't allowed to dispense.) She was over 90 at the time, so once dementia was at play and she refused the aides, we had to consider a facility. When bros found out the cost of MC, their eyes lit up and they both said for that kind of money, they'd take her in. Sure they would. Neither could handle it. It would have been a colossal failure, with mom paying the price! They couldn't have been much more absent, both in helping take care of things, including the condo, and visiting mom.

Having a much older parent who also has dementia which HAS impacted her personality really can't be compared to what you experienced in the past. It doesn't mean you should give up trying. Get some help in. Try to lose the anger and resentment. Try to laugh off the "antics." Ensure you get time out to do things YOU enjoy. Get away from the house when the aide is there. Build your own interests. Mom's care is important, but sometimes things can wait. Just because someone says jump, we don't have to ask how high. Meanwhile, it might be good to explore other options. She won't get any better, but rather worse, so there may come a time when it just isn't working at all. If it's too much for you and aides, consider a facility. You will have some time after hiring someone to explore places nearby. Visit often, vary times you visit, ask LOTS of questions. If/when it comes down to safety, for both you and/or mom, then it will be time to move her. My mother outweighed me, so I wouldn't be able to provide her care. Stairs here were also an issue, as are bathrooms that are much too small to handicap. It was better for me to find the best place for her, nearby, and visit, manage everything and provide supplies. She was well cared for, always clean and relatively happy there. Thankfully she never took on a negative persona. I did ask staff who body-snatched her though, when they'd tell me how cute and funny she was, along with some of the stories about her antics.

Do come back after you've had assistance for a while and let us know how things are going. Have a chat with sister, to see if she can at least be emotionally supportive. Hang in there!
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My mum is 82 and is the same I’m fortunate enough that she lives in her own but she is always running me down to my sons says nasty things and I do all her shopping etc she complains about the food I get her and sometimes I feel that I hate the person she has become it must be harder for you living in the same house you just need to accept it’s not really her anymore it’s hard isn’t it?
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Why would you allow someone that treats you like that to live in your home?

Sounds like it's time for her to move.
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In addition to looking for facility options, PLEASE get your mom seen by a geriatric psychiatrist.

Your mother sounds very unhappy and possibly depressed and anxious. There are meds that can help with that.
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I felt the same way when my mother with Alzheimers moved in with me. None of us are qualified to handle someone with mental illness, but yet, here we all are struggling for the sake of family. Things do change. Over the past 6 months, I have seen my mother go through several stages, some good, some bad. Once I got her meds right, her anxiety got much better and she became more bearable. She is on Antidepressants and Trazadone 3 times a day. Trazadone is used for sleep, but I give it to her during the day to keep her calm. Another thing I've learned is that drugs can work differently on dementia patients. The drugs my mother takes would put me right to sleep. But, not her! I also got outside help. I have an aid come 8 hours a day every day. Medicaid pays for it. Your mother may not be mean forever. Pray for change. I received changes and blessings that I never even imagined. Take deep breaths when she is mean. Try to redirect her attention to something else, like a tv show, food, etc. Get counseling for yourself. You need someone outside the family to talk to. My deepest sympathy for your situation.
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I keep 2 old pictures of my Mom, (when my mom was my mom), on my dresser that I look at before readying her for the day...this is a reminder to me of who I’m really caring for.
My Mom no longer recognizes me as her daughter but as her caregiver. I no longer hurt by this reminding myself that my mom is NOT a well person. Separate the 2 moms, the real mom is gone, otherwise you will hurt yourself emotionally & she will drain the life force right out of you if you let her and she won’t think twice about it they’re that selfish & self centered!
What would hurt is if your sister believed the things your Mom tells her about you.
It is hard to separate the old mom from the now mom but try because believe you me it does get worse!
My Mom also lives with me in my home & has for 4 yrs now. I don’t have a partner that helps or is there for support. That’s a major plus!
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Dear Ms American Pi - - The Day The Music Died has LONG PASSED, hasn't it ???

YOU did everything you could so far, honorably, to fulfill what you felt were your loving obligations.

YOU will not get any help or agreement from your mother or your sister. It is what it is. Please enlist the help of your "very supportive partner" to find a facility where you can place your mom and GET HER OUT OF "YOUR" HOME.

Once your mom is placed, there will still be plenty for YOU to do, as her advocate and overseer, if SHE either "lets" you do it, or doesn't kick up a fuss. Memory Care places are usually quite astute about unjustified complaints by dementia patients however, once outside your home, if she goes off the deep end and continually complains bitterly, facilities are mandated reporters, and they may have to take action that could cause your mom to become a ward of the state.

So, after your mom is not in your home, if she doesn't settle in, and she still has enough of her brain wits about her, you can try to explain this to her in order to encourage her to stop, and "try" to explain the eventual consequences. It's usually a slippery downhill slope once they get into Memory Care, and you can only hope that she begins to forget her meanness and bitterness when she's not face-to-face with you and her living situation every day.

If you and your partner end up being the only supportive visitors she has, and without the daily grind of caretaker tension, she could even come around to looking forward to seeing you.

So, dont let Don's words come true:

"Oh, and there we were
All in one place
A generation lost in space
With no time left to start again"

Instead, maybe your sister will hear you through this (MY other Don favorite):

Now, I understand,
What you tried to say to me
How you suffered for your sanity
How you tried to set them free
They would not listen,
They did not know how
Perhaps they'll listen now

Now, I think I know what you tried to say to me
How you suffered for your sanity
How you tried to set them free
They would not listen, they're not listening still
Perhaps they never will

(...smiles...)
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LakeErie Apr 2021
No idea what you are talking about.
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Sounds like she sent into a deep depression when she lost her life's partner. Has she had a stroke, strokes , dementia,and depression does. Make them mean. You can put her into NH, or assisted living.you can also hire home care to come in and help with bathing dressing her they can even take to app.. this will give you rest.
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Sounds like you’re on the right track. Getting someone to help in the home first might really be the way to go for you. My father has many mobility and incontinence issues, and ended up needing memory care. We tried having him in my home, but he was very difficult for everyone - not just me. He did independent living for a while, but was falling too much, so we had to move him. Assisted Living has its pros and cons. You’ll still find yourself very busy with her even if you go this route. I think the nice thing about the assisted-living is that you don’t have to be a caretaker in the same fashion that you are right now. The negative is due to Covid. Most places are still restricting visits, and it’s very stressful to have them be so isolated and without contact from loved ones. Another suggestion, watch Teepa Snow videos. She is the guru of dementia care. I’ve learned more from watching a few of her videos than I ever did from any dementia books I read. Good luck, I hope you can get mom and yourself the help you need!
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when her personality changed, she was not your mother. This is the dementia and try to distance your self emotionally from her words. I use sarcasm, "ohh having a bad day? " responses to get me through . Seek counseling or some books on the verbal abuse and how not to own it and break yourself down.
Anything to get her care from others or in a place herself. She has medical issues and you are not capable of addressing her needs, do not feel guilt about that. I appreciate all you did and your heart to do it.
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Until you find a permanent solution ask your sister to come in for an afternoon to allow you to take care of your personal needs. I like what was said about keeping a photo of her in her "happy" life. I am looking for pictures I can frame that show a smiley face or the words smile. I am doing this for myself so I don't get wrapped up in so much negativity.

The advice I've read - go for a doctor's visit. No doubt there is some medication, with fewer side effects - that can help immensely. As our days continue, I trust that I will remember all this good advice so I'll be able to handle those difficult encounters.

Take care of yourself and get some help and spend time with your significant other. Letting this be all consuming - won't help. Sending you hugs and support.
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She doesn't know what she is saying due to dementia. Respond with ok. Is she on the right medication to keep her calm. Give her tasks to keep her busy. Fold towels napkins. Have her put silverware in right places
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Bless you for doing what you've done for as long as you've done it!!! Now (as other's have said)...it's time to look for an alternate living arrangement for mom. My mom is 91 now and her mind went years ago - she wanted me to quit working and move in with me - I already knew from our previous history that her idea simply would not work - under any circumstances. Her personality has changed, she dislikes everyone (that's been a constant for years)...and I could go on - but what's the point. I support her from a distance and it's best for all parties. My mother can be so judgmental, critical and unkind to everyone around her - including me - and then she wonders why people don't like her -...

Please, please, please start searching for a place for mom - get her moved out of your home or you from hers as soon as possible. It's not too late to save yourself...and certainly not too late for mom - her nastiness won't change one way or the other based on your decision. She will cope with it and so will your sister.
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Adjust your thinking from what "was" to what "is." As you have noticed, your mom has memory issues and in her forgetting she makes up stories to "fill in the blanks". That is why you, the person who primarily cares for her, is blamed since you are the one interacting with her.

Reality. Your mom is having serious problems with dementia and anxiety. Please get her evaluated by her physician. Do not be surprised if the doctor makes referral to a neurologist (for dementia evaluation and treatment) and/or a geriatric psychiatrist (for anxiety evaluation and treatment). Expect that your mom will be placed on new medication. Expect anti-anxiety medication to make her a little sleepier.

Reality. Your tiredness is a sign of burn out. You need more people helping with caregiving. Ask family, friends, members of faith community, and paid help to pitch in so you get some time off - and away from mom. Use your time off to meet your own health care needs and your "soul" needs (doing things you enjoy with people you value).

Reality. If medication and more help do not change your situation, it may be time for mom to move into a facility for professional care. Coming to this place of understanding is not an admission of weakness on your part. It is understanding that she needs round the clock care (something 1 person can not possible do). Eventually, most people with advancing dementia reach this stage.
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You will get the complaints and the "blame" for things just b/c you are the one there. You are doing all the good things to take care of her, but when she feels ill or disoriented or in pain, you are the person in sight while she is feeling that way so she may associate you with her discomfort even though you are not causing it. What is she "blaming" you for?
When she is negative, maybe you can say things like, "Yes this is a bad day," or "You are angry that Dad isn't here to take care of you . . " whatever is relevant to her complaint.
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I am in a situation of helping to take care of my dad... he was not always very nice to me so sadly, in some ways it makes it easier as the change is not there.
I think you should respect what your mum would want.. not the person you are taking care of now, but your sweet loving mum. I am guessing she would tell you that she doesn't want this for you and to find her a good place to go. I have a sister like you and I have come to terms with the fact this will all be on me with our parents, it i just easier. But yes, you know what your mum would want for you.. Don't feel guilt, feel pride for being there for her when others wouldn't and save yourself.
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I know how you feel, I am going through this same thing as well. The only difference is your mother WAS sweet, my mother wasn't as negative about me as this, but she still was and this makes me only think this is how she really is and how she feels and is just more of the same.. So you are in a little bit better boat then I. All I know is,,,this makes me so angry to read because I know how you feel and it is just plain not right. I can't offer advice, but I can identify with you.
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Being the primary and/or only care-giver is tiring. Putting up with negative feedback is also tiring. Think of it like a toddler crossed with a belligerent teen! Either one can be VERY tiring, especially when it becomes all day every day! Very often I was able to deflect teen angst with humor. We all need to be able to laugh at times, so perhaps you can learn to laugh off some of her barbs. I once told my angry preteen that she probably hates me and wishes I'd dry up and blow away. She was horrified and told me no, she thought I was nice! Long story short, I ended up saying if I am accused of being the Wicked Mother of the East, then I would at least act like one! Explaining helped in her case.

Although it doesn't take any of it away, at the very least it is sometimes helpful to know you aren't alone.

* Many are either only children or have absent siblings.
* Often the absent siblings can make matters worse.
* Dementia does odd things to people, often changing their personality.
* Very often the dementia nasties are directed AT the caregiver.

None of these are rational, but dementia isn't known for being rational!

Feeling anger towards absent siblings is debilitating for YOU. It does nothing to change the situation or make them more responsive. You can't change your mother's behavior and you can't make your sibling help, but you can work towards more acceptance and try to lose the anger. It does help. I had to work my way through that, as I have 2 brothers who were mostly absent, but also unsupportive and sometimes downright nasty (physically and emotionally.) THEY were more of the problem than my mother was!

"I am blamed for everything."

Common. The best method is to laugh it off and agree. You know what you do for her and what dementia says/does is irrelevant.

"She talks smack about me behind my back to my sister."

Also very common. Again, you know the truth and that it's all made up. At the least, have you talked with your sister about it? Is she believing the crap she is told or does she just dismiss it? You likely won't be able to stop mom from saying these things, but if sister is at least supportive and not buying what she is told, then you try to let it all go. If your sister does believe it all and isn't supportive, keep contact with her to a bare minimum, but still know that what YOU are doing is good and right!

"I also resent my sister for not sticking up for me & for not being more involved with the care of my mom. She could easily share the responsibility, but won't."

Unfortunately, as noted above, the lack of support from siblings is common. It doesn't make it any better knowing that, but if you can realize 1) you can't change this and 2) your anger and resentment only hurts you, perhaps you can work on letting this go.

As for her "sticking up for" you, there really isn't a whole lot she can do. Dementia builds its own life and memories and can't be argued with, reasoned with or stopped. Sometimes it can be redirected, giving some temporary respite from the onslaught. Think of it as the Terminator. It has a one track mind and nothing will deter it. The difference is that weapons won't stop it, but her words are not going to physically destroy you, unless you let them.

"If I stand up for myself & say something like “ you hurt my feelings when you talk about me like that” she will go into hysterics & say I am causing her to feel ill or will lock her door & then blame it all on me to my sister."

This is proof of the statement I made about being unable to reason with or argue with dementia. It's all set in concrete, so trying to reason or argue is only going to backfire and potentially make you feel worse. We have to understand none of what is said is true and try to let it roll off, or laugh it off, agree with her and try to change the subject, redirect onto something more pleasant (not always possible.)

The rest of my response will be to your additional comment made Apr 21.
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Personalities can change with dementia. People can be accusatory, selfish, even violent. Don't take anything she says personally. Her mind is not right. You have to accept your mother for what she is now. You also have to accept your sister. Not everyone can dedicate their lives to an aging parent. She's not the same person she was. If she seems stressed, mention this to her doctor. Her doctor may have medications that can calm her. You've taken on a lot (and your partner). If her condition gets worse, will you still be able to handle it? What are you able to take on? Get connected with local senior groups who can support and advise you and your mother. Make sure all of her paperwork is in order and that she has assigned power of attorney to you or someone, and you know her medical directives and know how she wants to live if she is in a postition where she can't care for herself at all. Financial organizations often have their own POA forms, and you also have to be set up with Medicare and Social Security so that you can speake with them on her behalf.
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Imho, you require respite through any means possible, else you fall ill and are good to no one.
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Thank you for all of your experience and input. It helps to hear/read and know others are managing and have managed. My mother has been living with me for over 1 year originally because of falling out with her sister (whom she lived with) and my aunt's respective and unsavory family, then COVID. As others have noted, my mother's declining memory has contributed to her constant blaming and responding to everything with "No" as well as pushing back on all things good for her. We have home-aides, however, she is no easier with them.
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Am in the same situation that you are in. I can feel your hurt. You should very clearly say to your sister that its her turn to look after mum, and give your self a complete break from your mum and sister. Do not go over to visit or call up to find out whats happening because if you do either you will not be able to stop getting involved again. Easier said than done - but this is the only way to keep your sanity. If not soon you will loose your head and say or do something in frustration or anger and your sister and mother will blame you for everything real and imagined, completely forgetting how much you have sacrificed and done - and you will be left wondering where you went wrong. I wish I could rewrite the past.
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bundleofjoy Apr 2021
hugs!!
:)

i hope you’re ok!!

you wrote:
“You should very clearly say to your sister that it’s her turn to look after mum, and give yourself a complete break from your mum and sister. Do not go over to visit or call up to find out what’s happening...”

many of us are in situations, where if we would leave (and tell siblings to help), all that will happen is that the loved one will be totally abandoned.

many of us have siblings with zero morals. no scruples. they don’t care.

if they cared, they would have helped long ago.

if they cared, they would absolutely care about your life too, and the consequences on your life, since you’re the one helping with everything.

hugs!!!
i hope we all find good solutions.

dear byemsa,

hugs to you too!!
i’ve heard many stories like this: sweet parent becomes mean after dementia and treats terribly the adult child (often daughter), helping with everything.

be careful.
being treated badly has consequences on us, no matter how tough we are.

for example, it steals our time.

we all have limited time.

hug!!!!
i wish us all well!!!!
:)
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I agree with all the advice posted. Some mentioned something extremely important. YOU need to care for YOU. We all feel some sense of obligation for our ill loved ones or make the best of the situation and help where we can.

But the problem lies with we neglect ourselves. Find someone you trust to take care of her for an afternoon or evening. Do something YOU want to do (alone or with your partner/friends). Read a good book. Workout. Go outside and breathe the fresh air. Have a spa date(get a couple’s package. Hint hint hint :) ). But whatever you do do it for YOU. Because as we all know (and don’t like to admit) is if we can’t take care of ourselves and meet our needs than how can we care for others?

Bottom line? Nurture your mind and body but also FILL YOUR SOUL WITH LOVE!!!!. And don’t forget you are worth it.

Best of Luck! :)
~ Mares
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DotsDoc Apr 2021
Thank You! 🙏🏽
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thank you all for this thread
I read them everyday...you guys are what makes me not jump off a bridge...wow, other people feeling and fighting the same thing, what is better than that? A support group.
how many times I want to bang my head or his ...how many times I cry in a towel or whatever is near. How many times I wish I could change his life.
threw away my life in Connecticut to come to Midwest to help brother with Parkinson’s. That was 17 years ago... thought I’d be long gone by now, but still here, with him living with me and is 24/7 care.
He’s not grateful for anything, which is my biggest thing...find something every time you wake up to be thankful for. He resents, regrets, blames, and is a narcissist, and a typical Polish male from the 50’s.
he never stops to think that I changed my life to help him, can’t contribute as much anymore to SS, can’t even get any any kind of job because he is my focus. I owned my own biz, and before that worked for a huge department store like Macy’s.
He always likes to remind me that ‘it is my job’, that’s what women do.
ok, enough, just want to thank
it’s not the work that it takes every day, it’s the attitude towards life that drains me. Let’s not even get to the sibling who does nothing gives nothing.
so thank you ‘disgusted too’ for your posting, right on target
love to you all
this ain’t no disco....
christine
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