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My biggest bother is that rarely a day goes by that my mind does not go to my mothers needs. I have lost my retirement years. Even though she is in an assisted living I need to schedule my life around her. 3 years and I am so tired of this..{ps I love my mom}.
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Onlychild1962 Jan 2022
I am looking forward to retiring soon but feel my whole life is now wrapped up in the care for my mom. She has lived with us for almost 10 years and her health has now seriously declined. She can't leave the house and I am with her all day as I work from home until my husband can relieve me for a quick run of errands. I am at a time in life when I want to plan travel and enjoy new past times but I feel trapped. I have been feeling so guilty about these thoughts and emotions. I cannot tell you how incredible it is to find that I am not the only one going through these things. Thank you all of you for sharing your stories.
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Being screamed at, being yelled at constantly. Everything I say or do is "wrong" according to her. I've lost my self-esteem and my personality, my blood pressure is skyrocketing and the new bp meds aren't enough.

I've begged her to go to a Nursing Home and told her that 24/7 Caregiving is killing me slowly. She replied that I have "no choice." She doesn't care if I live or die, as far as I can tell.

I do everything I can to help her. My every thought is how to make her life better, more comfortable. And all I get is complaints, rage and hate. She's mad at today's politics, hates her Doctors, hates everyone I know, hates the neighbors. She even hates the dog now. I truly believe she hates me, too. She is so horrible to me.

I don't understand it at all. She's made my home a place of misery, I cry everytime I go back inside the house from going outside. I don't want to go inside! I want to run away. I want to run away, but I'm responsible - so I don't. I stay here and make sure she is comfortable, fed and taken care of. When will this misery end?

I've prayer, I've meditated... I talked to my Doctor last week and the Doctor prescribed meds for me and said I need 2 or 3 days off a week, but there's no money for even one day off a year. And no respite is available/affordable. I hope to God I don't get any people responding me telling me to ask a Church for help. I am so sick to death of useless suggestions.
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Ariadnee Jan 2022
Time to say NO. No more abuse. No more verbal abuse. Talk to a lawyer to correctly document what is going on, if in your state recording(s)-audio and visual are allowed when the abuser is going off on you. Also, if you own your home, what are your rights as far as this behavior is concerned. Abuse from a tenet is abuse-eviction is a solution.
Your mother needs professional help, evaulation(s), medications to get her stabilized. Call APS they will have some ideas about this too.
"No choice" Really? I don't think so. Pack a bag. Pack two. That'll at least get you to a place where you can begin the process of leaving. Then, put 'em in the car. Still getting ready to leave-this does not have to happen all at once. Then, have your "I'm leaving" script written down, keep it short-no need for a long good bye-Mom won't care. Rehearse it. Have social services on standby-ready to come get her. If Mom still thinks you're gonna put up with her shiate, too bad. Read her your good bye. Get in the car and leave. There are many, many women's shelters that are so hidden (for obvious reasons) all over the country, a good option to think about if you have no where to stay. And, as I asked if you own your home, ask the local cops to keep an eye on it for awhile-in case there may be issues with your Mom leaving. When you do return, have all the locks changed.
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The sense of entitlement and the assumption that we are put on this earth to attend to their every want and need..while refusing to make any revisions to those perceived wants or needs. I shop for groceries for my elderly mother and today I had to go to 4 grocery stores to get the items she requested ...she refuses to understand that shelves are bare and she has to settle for different brands or substitutions. The world can be on fire and melting, I can be on my death bed,..but as long as she gets her favorite cereal, eveything is hunky dory as far as her tiny self absorbed little existence. I told her I was worried about my 35 year old fully vaxxed and boosted son that lives out of state but just tested positive for COVID...to which she referenced herself having arthritis and that "everyone has problems." The last of my childhood friends buried their last surviving parent yesterday....it sounds horrible, but I look forward to that freedom also. The 92 year old woman who gave birth to me is a hateful , mean spirited spoiled brat who has never been capable of any empathy or compassion . My only consolation is that my wonderful dad was able to finally escape from her when he passed away 10 years ago. How I wish she had gone first.
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My issue is that you really don't have a choice with the good and bad especially if you are all they have its sad for me and her my life is not mines no more its hers
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My mother passed almost 20 years ago but I (with the help of my sister) took care of her for the last five years of her life. The only real problem I had was diapering. It was ok as long as she just peed but when she pooped, I was sick to my stomach. And when she got blocked (because she couldn't drink enough!) I couldn't handle it at all. My sister, a retired RN, had to deal with digging it out.
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Losing focus on my own life. Persistent distractions from joy.
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Madisoncuckoo7 Jan 2022
Yes! This!Absolutely nailed it! Thank you so much for putting this into words
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The poop. First my husband fir 3 years ( terrible stroke) and then my mother.
I baby say my husbands grandson for two years, but knew when I had had enough poop and said please now get day care. But for me, it was poop.
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What bothers me most is watching my 2 brothers weasel their way out of participating in Mom's care AGAIN while my sister and I are near breaking point. 87 yo Mom is 3 weeks into a 5 day/week x 6 weeks radiation protocol for her cancer. Opposite coast brother who swore he'd come for a week to help take her to all of these visits seems to have gone dark. He hasn't even called her! Local brother suddenly has an apparent shoulder injury (last week he said it was rib) that prevents him from driving/loading her wheelchair.
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The grand annoyance is my mother's sense of entitlement.
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LightnLife Feb 2022
For me, THIS sense of entitlement is coupled with her delusional idea that she can still take care of IT ALL and runs everything into a giant cycle of craziness asking everyone for help, trying to avoid my assistance. It is too crazy to even try to describe here. I have gotten into the routine of watching where I can slide into her cycle and convince her again that I can help her. It is a type of mental gymnastics that is not for the faint of heart.
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I don't really care for putting compression socks on my mom every morning.
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I think I posted a similar question - what do you do on a bad day?
I feel the same - Dad needs the care, mum is acting like having carers is the worst inconvenience int he world. I’m trying to do everything I can and its never good enough. Yesterday pushed me to the limit and I feel like packing a bag and running away from my life
Why do our parents become like this? Is it a generation thing? I can’t imagine treating my son like this - maybe that sentence will come back to haunt me.
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notrydoyoda Jan 2022
a mixture of entitlement, their generation's view of children which somehow continues into the child's adulthood, and having poor boundaries themselves
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The worst part for me is lack of privacy. My mother makes it her business to park herself at our main kitchen table all day every day so “she can be where the action is”. Yup she said that. She does not give my family any time during the day to enjoy our home without her asking the same questions like a broken record. I just want her to spend. Few hours a day in her personal space (which is a large bedroom / mini apartment) that includes all the comforts of home. She refuses to do it…..so here we are.
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Countrymouse Jan 2022
Oh yes, snap! The presence at the kitchen table with the force field around her that makes it impossible to carry on normally. Been there. Boy that is stressful and so difficult to explain in a way that doesn't make her feel rejected. Possibly on account of the fact that she IS being rejected! - only not unreasonably so.
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My worst thing is feeling like I am call 24/7!!!!!!

No time off ever even though mom lives in her senior apartment.

Afraid to silence phone to rest.

Seniors taking care of older seniors is hard.
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DrivinBatty Jan 2022
I. Agree, I know mom does ask for things at the worst possible times when I am busy or trying g to work with our pastor or my cooks to or get our fur babies water or food but she does and I become so... Angry then I feel so bad. She is so sweet she knows when I am busy not to bother me unless it is absolutely important. What is wrong with me? I have the sweetest mom on earth! I feel so guilty and like such a bad daughter. She has heart failer, hole in the heart, anyrusm, lung congestion where she can't breath with out oxygen. I feel so sorry for her and love her so much. She is the best. And I get mad at her I feel so ashamed. Thank u for listening, I hope you don't think bad of me please. I am not a bad person just tired, angered this happen to her.
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Everything bothers me today.
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Finally realizing that it will never end. My health is deteriorating & I now believe she'll outlive me.
I want a day off. Just one. A full day off. One day.
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Trish1750 Jan 2022
I don't what state you are in but depending on the insurance you may be able to get respite care.When you are the fulltime caregiver insurances pay to have the client in a facility for 1 week either 1-2x a year to allow caregiver time for some relief.Look on her insurance and call to find out.Also you could hire a companion(if finances allow) a couple times a week even for 2 hrs each so you can go to lunch ,even a movie or sit in the darn car alone, I wish you the best,It sure isn't easy.
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I'm a retired RN & I almost wish my dad WOULD be irritable and stubborn. It would make it so much easier to step back. But, along with his vascular dementia, he is passive and pitiful & thinks if it wasn't for me, he wouldn't know what he would do. This all sounds good until you realize that this puts a huge burden on the me when making decisions. He is 95 and has always been told what to do - by his parents, the military, and my mom. My mom spoiled him & never let him do small things that he could certainly accomplish such as doing a load of laundry, fixing a light meal, running the vacuum, etc. So he's been very dependent for a long time.
When I visit him at the memory care facility, he keeps asking me what should he do. About what, I ask. No answer. He asks if he should take a bath, how he should dress for a doctor visit, how he should eat, etc. He never remembers my answers & it all starts again when I visit.
He has developed peripheral artery disease in his left foot, for which he had an angiogram with interventions last week. I don't think his foot will get better so I think we'll be looking at an amputation. This scares the daylights out of me since he will have no idea why, if it comes to that. And it will further increase his passivity & dependence.
I feel sorry for him & am anxious as there seems to be no good options at this point. Most people would say "don't go looking for trouble", but I feel like I have to look ahead & be prepared for the worst. This is what bothers me the most about caregiving - the unknown & being caught off guard when calamities happen, which makes for a very anxious life.
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LightnLife Feb 2022
Prayers and positive thoughts~ This sounds very scary for both of you.
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The narcissism. The fight instigating. The self-pity and performances (Performances being a fabricated health crisis or some other emergency that they make happen to ruin a special event or to prevent their caregiver from taking part in it. Performances also given if the senior isn't the center of attention). The 'showtiming' for healthcare professionals and company. They're actively dying 24 hours a day for their caregivers. The hoard of useless garbage and never allowing anything to be thrown away. The "stubbornness" that crosses over into absurd and asinine nonsense. The not ever remembering anything decent or good that you ever did one day in your life. Yet they remember every fault, mistake, and bad moment you ever had then act hurt when you don't want to take that stroll down Memory Lane with them. The constant disposal and cleaning up of piss and sh*t and a home that always stinks of both. Zero privacy and no respect for any kind of boundaries. The martyrdom of how they don't want to be a burden to their family. Yet they will make every day of their family caregivers lives a Titanic-sized burden because they don't want their family to help take care of them. They want their family to become slaves to them and the elder will act as slave-master.
I think this is what most bothers me about caregiving.
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I felt tricked by the system, then trapped in a nightmare. I said from the beginning I could stay only one month, to help get things in order. No one listened or helped me. My friend ended up in the hospital, and the only way I got a nursing home bed was by refusing to take him back home. Meanwhile, I was a nervous wreck and even had a car accident because my nerves were shot. I DID NOT VOLUNTEER to do this long term, but no one heard me. They just wanted me to stay out of guilt, etc. a nightmare , horror movie
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I had to pay thousands of my mothers money to a bank who refused to acknowledge my POA in order to get her bank statements for Medicaid. Put that on top of dealing with her dementia and you you have to wonder how you make it through each day.
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It's even hard for trained professionals to deal with sick old people. It's a million times harder for untrained relatives who do not even get paid.
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I gave up caring about her a year ago.
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Monikalabadi Feb 2022
good for you
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You know what bothers me about caregiving is my patient's family. Just to give you a background... I'm caregiving for my cousin's husband's mother. So, I'm related to her by marriage. I actually enjoy taking care of her because she's funny and has such a colorful sense of humor -- but there are those times where she has episodes derived from dementia as well as her depression which has significantly gotten worse since her husband passed. I have used this website as well as Teepa Snow's way to make sure that I'm communicating with her as calmly as possible to help her through her difficulties and to make her feel unashamed when she's doing a lot of weird things like pulling frozen food out of the fridge and putting it in her shower. Her son (my cousin's husband) only visits twice a month and not deeply involved in the day to day caring of his mother. He oversees all her financials -- BUT THAT IS IT. So when I implement things like putting child locks on the refrigerator, he always sounds like I'm being mean to his mother or when I put a lock on the side gate because she wandered out one day. Am I wrong for doing this? I question this because at the end of the day, my goal is to keep his mother safe. It is quite frustrating because I would want those solutions in place if someone was looking after my own mother.
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Trish1750 Jan 2022
you sound wonderful.You are doing all the right things.I would only suggest that when you need to make changes to send him an email(so it is documented) and re affirm it is for her safety and if he doesn't agree then he needs to come up with a different safe plan of care.
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Simply the back and forth with my mom. Her not being well..and having dementia she doesn't understand eating right.. Fluids and sleep.. She says 'Imma do what I want to do' So at this stage I just have to keep asking and coaxing her to do things.. But my patience I think is increasing.. That's for sure👍🏾
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LightnLife Feb 2022
All that... "You can't tell me what to do." or "Who do you think you are?" "I know what I'm doing." or "I am doing just fine." or "If you take my keys I will....." oh, the suicidal comments and the OCD/ODDseeming behavior. I'm a trained practitioner, yet I can't see the value in taking her to counseling. Will she recall the coping strategies? Not likely. Will she recall why she's there? Not likely. She says she doesn't need help and if she did, she certainly wouldn't take it from me. I didn't offer as that would be unethical. It is pure crazy making. This doesn't make any sense why there isn't more accessible help out there with so many folks suffering with this terrible disease.
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For me the worst part of caregiving is family not bothering to ask me how I am holding up. It’s not getting a simple call just to chat that makes things so difficult. It’s all about my mother and I’m their employee.
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Ariadnee Dec 2021
Yep. That was so true the first stint of caregiving-which was years ago. I thought by now, on my second caregiving adventure, that would have changed. Silly me-of course not.
I hope you are holding up as well as can be expected. Hope that if/when you read this, you had a good day. That you're not feeling too overwhelmed and able to keep going on as a caregiver. I also hope that you will know when to step back from caregiving and let the pros step in to do their work. As we often read here, it is nearly 99% impossible for one person to do it all. One word I hate is "Multi-tasking"-that should be a swear word, 'cause the clueless folks out there not doing caregiving think that....you can: take a loved one to the doctor's office, make sure the right meds are at the pharmacy and pick them up, maybe another doctor's appointment, make a meal, clean that one part of the house where the dust bunnies are openly mocking you with their antics, grocery shop, take care of household pets, chat with your loved one-just to make sure they're not declining too much-or yell at your loved one-'cause somehow they now blame you for everything wrong in the world and it's all your fault, and then your phone rings and another doctor's office would like a word with you about stuff, you think you're loosing your mind-nope-it's "only stress"....annddd on and on....
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My time is never my own. I feel like it belongs to everyone but me. I get 24 hour days like everyone else, but zero downtime. I feel like everyone’s time is more important than mine.
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Sadinroanokeva Jan 2022
I am so sorry. I get this. Everyone has a life unless you are the caregiver. Never truly a day off.
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Wow, caught me at this particular annoying time of day.....DINNERS!
Watch me cook, pick, prod at plate, pour 3 tablespoons of salt on (it's fake salt) without tasting, where my "linen "napkin, meal is now toooo salty, do you have any salmon, where's the cheesecake, I'm not hungry. ..
AHHHHHH
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Hardest part of being the caretaker of my husband with Dementia is watching him slowly going away. I miss the smart, strong man he once was. They sure are not kidding when they call this "The Long Goodbye"! However, a job to be done and I shall do it the best I can!
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Feeling guilty all the time. It takes so much patience to care for both of my parents, age 94, and when I show frustration, I feel guilty about it. I'm in my 7th year and feel I have put my own family on the back burner.
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missfits Dec 2021
I feel the same. I have had to raise my sons from toddlers to elementary school all while having this 85 year old man look over my shoulder and interrupt every Golden family moment. He thinks he is the most important person in this house and after 7 years I am just so done. Wish he would go to a nursing home already.
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What bothers me most?

The lack of me. Not knowing who I am anymore, what I used to like/love before I got into THIS. Not being able to consider, acknowledge and appreciate my very own wishes, talents and skills anymore. Being a human mould to somebody else's needs and fears, not knowing when it will end.
That my own 16 year old son suffers from me not being there for him when he needs me. I feel I am giving all my energy to the wrong direction: to the past (my parents) who will die soon instead of the future (my son) who will blossom. This elderly care lasting for years & years feels wrong, perverted and unnatural. It bothers me that with 50+ years I inhabit more the role of a daughter than I inhabit the role of a mother.
Sometimes I feel like Charon setting dying folks over the river Styx just that it is not a river but some never ending ocean. I am so exhausted.
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Ariadnee Nov 2021
Yep. This is the hard part. I'd suggest journaling about it. If at all possible, is respite care/support an option?
I rather think you are setting a really good example for your son, of being a care giver. Can the two of you have a weekly five or ten minute chat? No distractions, just a quiet couple of minutes to talk.
Since you've refernced Charon, perhaps re-read a good translation of Homer's Odyssey-dude was trying for 20 years to get home. Greeks knew a thing or two about persistance.
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This is the second stint for me as a caregiver. Family members, friends, think you're a professional nurse, doctor, problem solver, errand runner, expert on the illness you're dealing with (cancer first time, now dementia), doctors who look right through you in the exam room while you're carefully detailing everything that the person you're caring for has gone through (falling, outbursts, anger issues), but at least I spoke up. They do not ever intimidate me. Just feel like a tool sometimes. Like this second round of caregiving was going to be better, that I'd already done it and that the obstacles would not still be here. Why, yes, yes they are. Respite care? Able to reach a health care proffessional quickly? Isolation? A personal life? The medical proffession really needs to wake up to all of us on the front lines of caregiving. Our collective efforts save them billions of dollars every year, because most of us are family/friends doing this and most of us are unpaid. Hospitals must offer free courses, seminars and support groups for us. This has got to change.
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UnKraut68 Nov 2021
"Our collective efforts save them billions of dollars every year, because most of us are family/friends doing this and most of us are unpaid."

I hear you, and 90% of these family helpers are unpaid women. This is a scandal.
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