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One thing that bothers me about taking care of my gram is giving her a shower, it breaks my back, she never listens to my instruction, she is always freezing meanwhile I am pouring in sweat because it 90 degrees in the bathroom lol. Sometimes her bowels want to run spontaneously mid shower, good times. But after the madness ends and she is all fresh and clean it makes it all worth it.
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NeedHelpWithMom Aug 2019
Oh yes! I had to buy very soft baby wash clothes too. Not a wrinkle on her face but her skin is so tender and breaking down. So hard to see them age. Really is...
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Lostinva and Alisons,

My husband’s grandma was so freakin miserable that she wrote hate mail from her hospital bed just before she died! She died alone. No one could stand being with her anymore.

Most people want to make peace before they die, not her. The entire family received a ‘hate’ letter!
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inkandpaper Aug 2019
Sorry things went that way!
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My own selfishness. I sometimes blame her as the cause that we can no longer travel when we want, go where we want and do what we want. We have no children so our life was our own. Then I remember that WE asked her to come live with us. She did not ask to sale her home and move into a room in our house. She did not ask for her license to be taken away and her car to be sold. She did not ask for her independence to be taken away. She did not ask for a diagnosis of Lewey body dementia. It is those times when she is trying so hard to get a fork of food into her mouth and it spells down the front of her and I see the embarrassment and frustration of a once strong lady in that single tear that rolls down her face. It is then that I remember just how much I love my mom and everything she did for me growing up.
So yes, it is my selfishness that bothers me the most.
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SueC1957 Aug 2019
Wow, very insightful of you.
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When reasoning with Mom , she wants to debate , argue EVERYTHING I say. also, she nags me about being overweight , she barely weighs 100lbs at 5’2 and I weigh 180 at 5’7 .... I am healthy and try to walk 5 miles a day. She says I eat too fast...... I walk too fast, ... I drive too fast , I load her dishwasher wrong, I don’t heat the dinner plates , I d t put the salad on a separate plate .... I’m just getting pounded down regularly ....
Golly what do I do right? Sorry to nag I know I should not but I am so glad you all understand my pains . ....tummy aches . Alison
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NeedHelpWithMom Aug 2019
My mom has gone through the extreme criticism period too. It hurts. It’s confusing because we do all that we can for them and wonder if they are appreciative.

I started telling mom, “Well, if you don’t like what I am doing I can find someone else to do it for you.” That quieted her down. Then, even apologized to me.

You know what I think it was for my mom? This is about my mom, yours may be a whole different story. I think her criticism is because she is bored and frustrated.

I hope it gets better for you. If you can take a break, do it. Hugs! I don’t take breaks either and that only makes our frustrations worse. I used to run around like crazy catching up if she naps. Now I don’t! I rest too.
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Old people lose their filter and lose their patience. Am I right or what?

I know it’s hard for them too. I am not heartless. Truly I’m not.

You know, it’s interesting. I personally feel that for the most part if someone was sweet and agreeable at a younger age it is likely to continue. On the other hand, if they were mean as hell when younger, ooooooh watch out! You’re in for a long, bumpy ride. That was the case with my husband’s grandma. She was hateful her entire life!
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grammyshelper Aug 2019
I agree, people tend to carry their younger personalities into their older age. I think a lot of folks mistaken the idea that every elderly person is sweet and innocent but in reality some can be vindictive manipulative and mean, which can cause problems in their caretakers lives.
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For me, it's watching a once kind, intelligent, strong confident man turn into something that is totally opposite of who he used to be. The mental and physical decline is heart wrenching. The worst part is he still believes he will get better! I wonder who in the hell ever thought of the phrase " the golden years"? It's so wrong! I have lost a lot of faith watching him suffer. I would rather die at a younger age than go through the pain, incontinence, insecurities and loss of oneself that comes w old age!!!
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NeedHelpWithMom Aug 2019
Awkward,

It’s not that uncommon for those who are suffering to be in denial. Sooner or later, acceptance will sink in. Happens in stages. Know what I mean? Some people process in stages. They are having a difficult time taking it all in at once.
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Let's see. So many things to choose from, but I'd have to say the one thing that bothers me most about caregiving my mother with dementia is how she figuratively sticks up her middle finger at me about asking for help to transfer. She's fallen more than 3 dozen times over the past few years and is now wheelchair bound & living in a Memory Care facility. The physical therapist posted signs all over her apartment saying PLEASE PULL THE CORD FOR HELP TO GET UP. Does she do it? Never. And she likes to rub my nose in it when I go over to visit. She'll start to get up from her wheelchair saying she has to use the bathroom, and I'll say "You need to pull the cord Mom" and she'll say "Oh no I don't" and the fight is on. Everyone knows she gets up by herself 99% of the time, so it's just a matter of time before she falls AGAIN (she's already fallen once the 2nd week she was there, in the shower, and blamed it on the aide, of course) and we take ANOTHER trip to the hospital. I am an only child (at 62) and 100% responsible for ALL of the messes she creates, so to have her doing these things purposefully is too much. She's also verbally abusive to the other MC residents, calling them STUPID and CRAZY and NUTS and referring to the facility as the NUT HOUSE and she's been asked to stop MANY times, but she just snickers. If she gets kicked out of here, the next step is a Medicaid nursing home & she'll have a ROOMMATE, which will be disastrous..........for the roommate. She hates women.
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Lostinva Jul 2019
She needs the 24/7 care that a nsng home provides. It reaches a point when the decision is not theirs. She can’t make a rational decision any longer. Apply for Medicaid, tour some facilities & get her on a list. A fall, ER, 3 days in the hospital & they will transfer her to rehab that also has LTC. She can be transferred there after she’s finished with rehab. I don’t want my mom to have a bad fall but that’s the only way they get in now a days.
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The destruction of the memories of the person who was. I am still shell-shocked at the amount of who I thought my dad was versus who he really was. I have learned more about his inner thoughts that leave me stunned almost daily. It's the little things that nudge the recollection, "oh man, so that's what that, fill-n-the-blank, meant/happened." and of course, the "I knew it!" versus "I didn't want to know it."
For me, it's the living with the coming, after his passing, memories. I just want to keep my happy, pleasant memories, not the ones I know now and I don't think that's what's going to happen.
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What bothers me is how no one would help me until she couldn’t handle her finances.....then POA stepped in & cut me out of everything. She would sit in her home alone for days @ 96 years old but he had “control “ & that’s all he cared about. Now I can’t see her or speak to her & she has dementia & thinks he’s taking good care of her.
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anonymous912123 Jul 2019
This is sad, so sorry.
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You’re right, they become quite selfish but the thing I hate most is the isolation, a prisoner in my own home. Can’t leave her alone & it’s a fight each day to take her to a senior daycare. Complains about everything. I never could do anything right in her eyes & now that I’m 70, I’m still a failure to her. So over it.
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anonymous912123 Jul 2019
My dear mother told me and my brother (her favorite) that we were both useless, on Christmas Eve no less, that is the last time I spoke to her. I had enough abuse. My brother calls her a couple times a month, she is 94 and lives alone, refuses to move anywhere else. Oh well, we wait for something to happen.
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For me its that I have forgotten how to live a normal life since I have been so focused on my parent's care for so many years... I have forgotten how to live and don't know how to get that back.
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shipjean Aug 2019
I truly do not know myself anymore...caring for my husband as he deteriorates leaves me wondering what I will be when he's gone. I am involved in nothing but his care. My family has deserted me...I have no friends nearby...I'm just alone in our home with my husband that just wants to sleep. Caring for a loved one that has dementia is lonely and depressing.
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What bothers me most about caregiving is the loss of my personal time and feelings of isolation. I am caring for my mom with Advanced Alzheimer's, for the past 16 yrs. For the past 2 yrs I had to stop working as her Alzheimer's had progressed. 5 weeks ago she suffered a massive stroke that has left her bed bound and no longer able to swallow, now has a feeding tube. Prior to this event she was able to walk had minimal episodes of incontinence. Now the care is around the clock just to prevent any pneumonia , uti or skin breakdown. No time left for myself as I live to care for her and that I am too exhausted for me.
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anonymous929891 Jul 2019
I would reconsider the feeding tube, in fairness, I have had this conversation with my Mum and I feel strongly that I don't want anyone to fight to keep my body alive once my brain is gone so it's simpler for me to follow that choice, but sometimes I think caregivers are not even given an opportunity to consider the choice.
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I want to start my life but I can’t.
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Since my LO died, I realize that (for me) the worst thing about caregiving was: all the hideous memories it created for me (of my mother). They now linger like a miserable dark ☁ cloud over me. Not sure what to do about it either.
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Lostinva Jul 2019
I fear the same thing when my mom is gone. I have horrible memories of childhood & now more of them caring for her
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Not enough hours in the day to get things done.
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The ONE thing for me that bothers me the most would be: That I have to "change" someone for the rest of my life.. Sorry if I already posted this...
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I can easily ditto a lot of what has been expressed...but the question is....What is the ONE thing that bothers me MOST about caregiving....it is the overwhelming feeling of responsibility to see to it that my wife lives out the remainder of her life with the best care possible and that I won’t be able to live up to that responsibility...this is what keeps me up at night.
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grammyshelper Aug 2019
Keep up the good work, your a good husband for what you are doing and when everything is said and done you will feel at peace that you did what you had to do to help the woman that you fell in love with and married. My thoughts and prayers are with you.
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Like so many others, it's the ingratitude and self-centered behavior.

Sure, her mental decline is frustrating - and we are often unable (and I really no longer try) to explain things like bills, why she only got 60 pills not 90 (this was your pain pills, you only get one month's supply, all your others you can have 3 months), restrictions the doctors have placed on her (walker only, no more cane, no driving or using the Dixie Chopper, etc.) That's frustrating, but I try to remember her brain is broken and she's not being argumentative on purpose.

But expecting us to do for her, and we do, and never a genuine thank you - just meanness and fussing about how it wasn't good enough, I wasn't good enough, I'm stupid and she hates me . . . . . that gets hard. It mostly happens when she is in pain, especially on grocery day when she has been on her feet in the store for hours. It's hard not to take it personally and to remember it's her broken brain. Yeah, I mostly never remember it's her broken brain then, I just take it, and try to keep going.

Especially when she is intentionally cruel -- she once blamed me for a disagreement she had with her son (My dh), that I had nothing to do with, saying "You come from a broken family, you like drama" :( Just, wow! She had to have held onto that, and thought that way for over 30 years, since I came on the scene. (although it really explains her crappy treatment of my middle DD -- because that DD is the spitting image of me, so likely reminds MIL of me back when I started dating her son)

Never asks about me or her grandkids (all young adults with lives . . .plenty to ask about!) or even her son. Not interested in anything but her, how she feels, what she wants, who is doing her wrong this week (when really, they are trying to help her!) My niece is pregnant with her first great-grandchild, and she really couldn't care less - so sad.

On the upside, when I help my mom and step-dad they are very appreciative and let me know. I try to stop by there a few times a week to see what needs done (lightbulb changed, something heavy unloaded from car, etc.) It's easy to be proactive with them because they will tell me what they need, and then let me help them. Pretty much the complete opposite of MIL. Heck, they even refrain from doing risky or dangerous things - saving them for me, so they don't get hurt! How cool is that, lol!!
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MumsHelper Jul 2019
Mother is very much the same. Indifferent to everyone and everything. My grown kids come over at least once a week, but she never acknowledges them unless they greet her first. My daughter is expecting and Mother has never congratulated her or even asked how she's been feeling. My oldest son struggles with mental illness and was homeless for most of the two years she's been with us, but never once showed any concern for him or even asked me how I was coping!!
Just recently during one of her arguments over bath time I realized why she is so crappy to me -- "You look just like my sister." She and Auntie rarely get along!!
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One of the hardest parts for me is, she wants me to think for her and when I do, it's always wrong and then the argument.
I resent that when I leave to go out the door to go the store for one thing, she says look for something else. Always something else.
Always her screeching tone of voice.
She needs way more attention that I have to give. I've taken to staying in my bedroom a lot these days. Totally tired on being 'the mouse that the cat is always ready to pounce on'
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Unitetogether Jul 2019
Hi, that doesn't sound fair to you . I know, you say there is always something else. For me, there's always something wrong. Always something wrong with my husband. I don't or try not to let his negativity ruin my day. Going to the store for one item? I don't know your situation , maybe you want to get out of the house. It's sad you want to stay in your room. Care giving is a lonely life isn't it... Hang in there.
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Me, Me, Me...I, I, I, When I say jump, I want you to holler "How High, How High"? Fights everything tooth and nail, and never stops complaining. Every little thing is a big deal...bitches because the French fries take more than 2 minutes to be delivered, then they have salt on them... although at age 90, what difference does it make, you should have started eating properly 40 years ago, too late now...on and on it goes. IMO, the silent generation is one of the most selfish, demanding generations, can't be pleased no matter what. I am 72, I have had enough of all this BS, I want it to end.
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RUMacN Jul 2019
DITTO
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I agree that is at the top of my lists with my MIL too. It’s all about her from the time we wake up to bedtime. She doesn’t do anything but watch tv all day long and is waited on hand and foot. Yes she has dementia and a heart condition plus she is 90 years old but she doesn’t even try to do anything. Then complains there is nothing to do. We got her a puzzle to do and there it sits. When I do her laundry it sits for days bf she will put it away. How hard is it to put a shirt on a hanger and hang it in the closet? I feel guilty too bc I knew this would be hard but it would be nice to be appreciated once in awhile. I keep telling myself God will not give us more than we can handle. So I turn to him a lot. I go to 2 care givers meetings a month and they help too. Maybe u can find one in your area they help bc they have been in our place.
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I have been taking care of my mom along with my sister about 20 years. I am 40 moved from my home state with my daughters to better myself. What bothers me the most is my mom act like me and my sister do not want to have a life and have husbands. I feel greatly sorry for my sister she does not have kids or husband and she is 37. My mom has lived with us for most of the years she has been sick. My sister thought she was getting married two years ago so my mom came to live with me. I was told i would have help finding my mom a place. That was important to me to get that help, because i meet a wonderful and understanding man and i to knew i wanted to get married. Sense then for two year she has been with me she was off and on going to the er and finally got sick and had to stay in the hospital about a mouth with her and i and my kids the only one here in this state. I had to work take care of kids and she about her in the hospital and deal with a mental challenged coworker. I was overwhelmed but not at a breaking point. I called my sister and told her i need help. She came to live with me for about six months to help nurse my mother back to good help. She left and said she found a job back home to take mom back. Sense than i have been very ill. I was rushed to the hospital one night felt like i was having a heart attack. Dr thought i had clots in my leg because i was in so much pain. Went to see to vascular surgeons they saw nothing. I am thing now it my be anxiety and i had a panic attack or nervous break down. Still need to see a neurologist to confirm. Another thing that bothers me is o have to brothers. One just moved in with his girlfriend and the other one is about to get married. I am happy for them, but me and my sister has been robbed of our life. I am at my breaking point and i want to live my life. I think the only reason i live is for my daugters.
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It is the same day over and over again, always about her, her wants, her needs.
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The lack of appreciation and resentment from my parents! They actually blame me for the situation they are in (being dependent on me). It's SO frustrating.
Having read some of the other replies, it is heartening to know that there are others who actually show appreciation for their care.
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FlRedhead57 Jun 2019
Sorry you are having such a hard time. Whether parents show appreciation or not, it is still a heavy burden you carry. Makes it harder in your situation. Thankfully, God does not hold us responsible for the attitude of others, only ourselves. Even if they never acknowledge their part in the situation, you have the knowledge you're doing right by them. Having gone through the caregiver experience for four years and come out on the other side, I can tell you it's worth it in the end.
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All of the sibling infighting and the uniformed "suggestions". The unwillingness of any of my siblings to do what I've been doing but wanting me to protect their inheritance.
I used to group text to let them know how mom was doing. Due to no/low response I stopped two weeks ago and not one of them has called or text or even stopped to see her.
Mom has never "played well with others" and can be difficult but the least they could do is act like they care.
All I hear about is how I need to do this or that or the other thing and it's always for their benefit not for mom and certainly not for myself.
I live with mom and have lived with her for 4 1/2 years. I worked full time for two and a half years then went to part time and freelanced. I quit my part time job and ran the seasonal family business last summer for my brother and sister in law when they had an emergency with their granddaughter. All for free (it actually cost me money with all the driving back and forth).
I freelanced and took classes online over the winter with money I had saved and stuck close because mom was showing early signs of dementia.
Mom took a big turn for the worst in the last few months and now I can't say what the future will hold but I did promise her I would stay and keep her in her home until it became unsafe. I have one more certification to finish but lately her care has become a full time job.
I am just at the beginning of this journey and I'm thankful for all of you who share your stories and help me deal with the guilt and frustration and even the anger.
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anonymous828521 Jun 2019
((Hugs2u))🌈
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I wish those who have not had to take care of someone could see how hard it is for those impacted by caring for a loved one. My parents are extraordinary and our caregiving experience has opened my eyes to the everyday challenges for tens of millions of people.
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This is an update to my earlier post. My mom recently passed away, and my dad died three years ago. But over the last four years I took care of both my mom and my dad. The hardest part is giving up your own interests, friends, and time to take care of your parents.

No one loved their parents more than I did. I adored both of them, and they were gracious and appreciative of everything I did for them. But I felt like I lost part of myself during that time. However, while caring for them I also found some things. I experienced a renewed closeness to God, because I relied on Him for strength and wisdom daily. I also appreciated my time more when I had that rare opportunity to do something I enjoyed. I learned self-reliance and discovered strengths and abilities I didn't realize I had.

From my caregiving days, I was reminded how short life is and how precious relationships are. I took time to ask my parents about their memories of the past so that I could learn about their experiences in life, and keep those in my heart.

Yes, there were times I asked God "will this ever end?" It is so hard, and heart-breaking to watch your parents die. Both of my parents became so sick in the end that they asked me to pray with them that God would allow them to die. You think that's not hard?! To hear them ask God, with tears in their eyes, to take them to Heaven? In time, God answered their prayers and relieved them of their physical suffering, allowing them to pass on to their Heavenly home.

Oh my caregiving friends, I understand completely what you are going through. If you are still taking care of a parent, I pray God will give you the strength to get through it. It is the most difficult, heart-breaking thing you will ever do. But if you do your best, it will bring you peace when they are gone.
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jadaprincess Jul 2019
Sorry for your loss. Thank you for sharing.
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I think the hardest thing for me is not the actual caregiving. My mom was really appreciative of everything I did...almost to the point of being apologetic about how helpless she was becoming...she never lost her cognitive abilities. My step-dad, for the most part, is appreciative but a little more demanding...but he's a retired physician, so that's nothing new.

The hardest thing (and it's really selfish, but I'm going to share it, because I don't think I'm the only one who feels this way) is wondering, "How long will this go on...and will I ever capture my "own" life again?" There's such guilt in even asking that question, because the answer is, "It ends when your parent dies." So...am I really wishing my parents would get on with things and...die?

But hospital and nursing home hours are, I'm pretty sure, twice as long as normal hours. When you're at the care facility, you get SO TIRED from just sitting there and waiting...waiting for the doctor, waiting for lab results, waiting to speak to the charge nurse. And when you're not at the care facility, you're going 90 to nothing getting things done: your laundry, their laundry, getting meals, taking care of "normal" life. And then you're tired from cramming all of what used to be normal life into what's left over. And you're guilty, because you feel as if you should be staying with your loved one.

The ambiguity of the situation bothers me the most.
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Unitetogether May 2019
I know..When will this "different" life end. To me it's worse because I care for a young 60 year old husband.. I see a lot of years ahead of this.. Hang in there. They say were great , good people to be caring for someone. I would rather not and have MY life back.
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The feeling of being so unhappy. Giving up so many things that were part of who I am, so that I can take care of Mom. I have actually forgotten who I was, my whole life is centered around her care. She is near the end now and I find myself asking, where did the last four years of my life go? What will I do once she passes? I feel so lost and empty.
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I was a caretaker for 28 years to an elderly friend - while working full time. It was very difficult but in the beginning I hired a caretaker and later I had to put her into the nursing home which for some crazy reason she loved. When she was "bad" in terms of temperament or behavior, I would "nicely" at first tell her to stop. If she continued, I would really let her have it, go out the door and slam it so hard the building shook and not go back for days. Then she would beg me to come back and she would be as sweet as pie. Then all was well. I simply cannot and will not allow people to abuse me and act out. I have had too tough a life and too many responsibilities and poor health. They either shape up or ship out. And it worked like a charm. No one should be forced to take abuse from anyone else - ever. And of course it takes time away from the caretaker that the caretaker should have for themselves - and this causes resentments to grow.
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anonymous828521 Jun 2019
👍Riley2166.
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