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For me its the lack of support from siblings. I am not my parents only child but it feels that way. No one seems to consider the pressure I am under nor my parents well being.
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Dreams died.
Stupidly I postponed most trips, and goals for when I retired. But even before I retired the dreams and plans started to fade as his parents, my parents, and now he needs care.

I set small goals daily to make me feel that I accoomplish something. Thank goodness for the internet because with it I go to different countries, enjoy conversations, listen to lectures and learn. Locally, for the summer at least, there are free concerts in the park almost every evening in my or nearby surrounding communities.

I lost almost all hope except for a tiny bit. I still hope to live long enough to see the Northern lights in person one day or simply a night sky so crammed packed with stars that it seems like there are more stars than sky. Is that possible?

I use to be a regular person, tall and thin. I've been turned into Ma Kettle.
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Ariadnee Jul 2022
Ok. You have written about what you have lost. What you have gained is knowing what you want, a night sky packed with stars.
Now for the nitty gritty-do you have power of Attorney? What kind of respite care are you looking into/using? Have you spoken to an elder specialist attorney to manage finances and legal issues? It seems you are caring for three people, what are their diagnosis? More information for us will get you more ideas and possible solutions to your problems.
Ma Kettle was tough, smart and funny, and that's important. Tough times don't last, tough gals do.
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Oh....the dread....my husband with frontal temporal dementia, cycles through episodic periods of falling. I'm pretty sure the next cycle has begun. He refuses to use a walker when this starts. Of course I don't/can't pick him up when he does fall. I call the very nice EMTs, who come over to get him back on his feet, I wheel the walker over and he then rolls down to his bedroom. The EMTs leave and my husband says "it's no big deal" and goes to sleep. Of course there are stairs in this house-16 steps up/down in this old Victorian. I told him last night not to go down the stairs if he wanted a snack. So far, he hasn't-but there may be the day, a foggy, hazy dementia addled day or night, when he'll go down the stairs and lordy, I hope not fall. I've been behind him as he has gone down the last couple of steps and he has landed hard on his bum. Sigh....so.....it's the dread....I just know this cycle of falling has started again. I do keep track of this in a calendar and my husband knows it and hates it-which is counter intuitive to the "it's no big deal" response when he falls.
There is no single reason this is happening, not medication, not inner ear, not an UTI. Although, his mother did do the same thing towards the end of her life and this may have a genetic componet to it. On average this lasts between 7-10 days with about 5-8 falls, usually late at night, none very serious-broken bones or fractures or sprains. Yet.
So....the dread is the most vexing part about caregiving right now.
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MicheleDL Aug 2022
Is there anyway you can set up a bed on the same floor as the kitchen?

This is a bad time to move but daily I do something to rid myself, and the house, of stuff so that when I can I'm going to make a leap to a one level living arrangement. Why is it the books and paperwork are the hardest things to let go? (Rhetorical question)
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Myself. I look back at the last three years and see a person who wanted the impossible. I wanted to do a perfect job of caring for my father's health and I wanted recognition. I now see that I could only do as much as I could do and that my siblings just expected me to do so. And never thanked me.
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Louise4 Jul 2022
You did the best you could. God sees everything. You will receive recognition from God himself as you store up treasures in heaven with Him.
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Yes, it's sad. Mom is never wrong, Everything I do is wrong.
I know she has Alz, but I just feel abused. Wish I had another sibling to take some of the burden off me.
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BurntCaregiver Jul 2022
breadbuyer,

It really doesn't matter all that much to the abused if the abuser's behavior is dementia-related or if they were always a bullying a$$hole their whole life. Either way it's still abuse and no one has to tolerate or live in it.
You don't have to either.
I know you have no siblings to help with the burden, so help yourself. Look into placement for your mother or in-home care services.
In the meantime learn how to ignore her. If she starts tell her, 'Shut up. Nobody cares what you think' then walk away.
I remember a client I had years ago. Alzheimer's, in a wheelchair, diaper-dependent. She used to hit, kick, and bite. One time she bit me and I hit her. On the upper arm. Not hard enough to cause any damage, but hard enough to make my point. Then I got right in her face and told her in a very threatening voice that she will never bite me again. She never did and I was with her for a long time. She hit, kicked, and bit others but not me.
Even with dementia, self-preservation and awareness can still be present.
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What bothered me the most was being constantly berated and attacked by my mother that I was caring for throughout the day (and some nights). She'd incessantly request for something, then call me an idiot and similar once I gave her what she requested for doing it. If someone called, she'd find things to complain about me to them.

She'd threaten that she won't give me money, with this angry tone like "got you now!" when I never expected it, asked for it or took a dime from her during the caregiving. I learned not to ask how she was feeling because she'd get angry at me for asking that. I don't know why.

She insisted on running her life but was incapable to correctly take down basic instructions about when her next doctor's appointment was or when and what medication to take. When I tracked that for her and reminded her, that resulted in dozens of arguments from her about the accuracy of the information or that she did not want it.

Caregiving is such a thankless job. Instead of gratitude, I mostly got "educated" and demanded from more from other family members who did not live in the same city as her.
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BurntCaregiver Jul 2022
My mother sounds exactly like yours. I told her just the other day that a person who can't even make themselves a cup of coffee, would do well not to alienate the person who does make it.
I do not tolerate her crap or learned helplessness. I force her to do for herself and that's because I do care.
She wants to be babied and waited on hand and foot but knows that will never happen with me.
I've told her many times that I was an in-home caregiver to elderly for almost 25 years. So I know every old person tactic, angle, and behavior. Now we are at the point where I'm leaving and there needs to be a new care plan. She refuses to discuss it and when I bring it up she works herself up into hysterics and panic.
She knows that if a plan is not made a call goes into APS and she'll be placed in a nursing home. She isn't rich so it won't be a swanky, high-end one. We shall see.
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That one of my siblings expects my mom to change her whole life around because my dad has dementia. My mom is sick physically while he’s sick mentally but she has to give everything up. That the same sibling doesn’t believe in redirecting my dad when he’s being destructive or messing with my moms O2 machine. Just lefts him do whatever That being a caregiver of elderly parents is so overlooked (in my case I feel) because I was addict my parents put me through rehab, took me and my son in when I got divorced and cleaned my life up. I’ve been clean for 9yrs but my siblings make it seem that my parents did all that for me now I have to be there for my parents (which I wouldn’t trade 90% of the time but once and awhile I would love to be a “normal” person.) and that my past is still held over my head.
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Ariadnee Jul 2022
I don't know if you have sponser, if so, I'd talk to them about your family's behavior and how best to deal with it.
I don't know if you go to meetings, stick with it, you need all the support you can get.
This is a really difficult situation, as well as very stressful, you need to get some help and find out what's available for respite care.
Take good care of yourself and your son.
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At night what bothers me most is that I cannot just go to bed when I'm tired. Ever.
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graygrammie Jul 2022
Oh yes. How I long for the days of 10:00 p.m. bedtime and sleeping through the night.
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The sadness and strangeness of dementia and how I still respond sometimes instead of keeping my mouth shut. Like, “Why did you do that?” when I know she has no idea or “where did you put your teeth or your bra or whatever?” when she doesn’t have a clue.
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I've started taking back my power, deciding what I can/can't do for my elderly parents. This stance/behaviour has manifested in all my relationships now. It's like a miracle. I say yes when I can do it, no when I can't. What others (parents/siblings) say about me behind my back is "none of my business." In my opinion, I'm doing my part authentically now and even though I am pretty sure my 'no' isn't received well, so be it, in my head I say " I'm doing my best." I believe the times I do give now has a possible healing energy as I am full of love/joy/laughter when I am with them now, not resentment/obligation. It's working very well indeed!
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I resent that my life is not my own anymore and that I’m sacrificing the last good years of my life for people who expect I have to do this and are unappreciative about the sacrifice I and my siblings are making for them.
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beadbuyer Jul 2022
I too resent that the last years of my life are dwindling. I really need to put mom in a home, but she wants to stay in her house and I am torn between her wishes and mine.
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It bothers me that I leave the SNF every day and feel like I’m the one with dementia. Trying to carry on a conversation daily with someone who has no idea where they or what year it is can be exhausting. Watching the wheels spinning, but nothing intelligible comes out leaves me bewildered. I find it hard to switch gears to go to work, perform well and go about my own life. I quite literally fear for my own mental health after I walk out every day. It’s only been a month for me, but I’m learning to just roll with it, try to make her laugh and for Gods sake, don’t mention anything that’s more than 24 hours in the future.
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MicheleDL Aug 2022
That's it. You get the prize. I know this is serious, but I stopped dead and laughed out loud, when I read just your first line. I'm doing the shoulders up and down stomach tighteing shaking all over big smile laughter thing right now too. I'm so sorry, I read the rest, its serious, but your hilarious. Thank you.
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Marialake, you lament sounds like an echo of my own life with my Loved One. He is an 89 year old amputee with balance issues. He has very poor hearing even with a hearing aid and he's legally blind. He is unable to fend for himself with the most basic of tasks. Must be helped to dress, undress, loaded into the shower (thank God he still is able to wash himself and wash his hair). I do all of the caregiving with no outside help, take care of the house, the cooking, the yards, the vehicle maintenance and manage his medical needs (which are complex with the aid of five specialists). He has undergone months of wound care, hyperbaric chamber treatments, hospitalizations, etc. He is now stable, home and we have got a rhythm to each day that works. Unfortunately, it leaves about 45 minutes in the morning before he awakens and about 1 1/2 hour at night after he goes to bed that are my own times to read, relax, recoup. He doesn't want an outside caregiver because he doesn't trust anyone. On Sundays, I take about 3 hours completely off and paint (my only entertainment or relaxation to speak of). He always finds some way to disrupt that time period with some "need" or another. A bit overwhelming at times. I, too, feel guilty at times for thinking he is a self-centered pain. Thanks for letting me get that off my chest.
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I think maybe if there's ONE thing that stands out would be this. I wasn't prepared to retire at 59 years old but had to to help parents, brother and MIL with Dr appts. etc. I'm sure they all appreciated the help, but no one offered to help with finances...gas, lack of income to the family (husband and I) After MIL, Mother, Dependant brother with mental handicap parents cared for whole life passed, Father moved in. He had been in ICU and wasn't expected to last much longer......5 years later he's a amazement to the DR.s
However, back to what bothers me...husband lost job during Pandemic, couldn't find another...61 at the time....now 66. So! We are 'pinching pennies' to the extreme. I will get a nice inheritance, but who knows when that will happen. We have spent 5 years 'locked' in our home basically. My grown children with grandchildren are acting resentful of my time....have lightly offered to help, but never have (I understand how it is with families and working, but...)
The hardest is dealing with a husband that is increasingly getting unhappy with the situation. He wants to be able to go out to dinner occasionally or maybe just a drive together - ALONE...
I feel pulled and torn from all directions! If I put my father in a facility, they will use all the inheritance before Medicare kicks in..... then I'm really up the creek. My father has just enough mental cognition that hardly anyone talking to him for a short time can tell he has dementia. He will probably disown me and also as bad, feel hurt beyond belief.
There are times I wish I could completely disappear.
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polarbear Jul 2022
..."husband lost job during Pandemic, couldn't find another...61 at the time....now 66. ..."
"...5 years 'locked' in..."

How did you figure 5 years? Here in the US, the COVID pandemic didn't start until March 2020 when big government told the people to stay home for 2 weeks to flatten the curve. Well, 2 weeks turned to 2 years and counting.

So, where did you get the 5 years from?
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This is also my most frustrating issue with my spouse who has FT dementia. I had actually fallen down stairs and asked for his help, he said are you ok and I responded no. He stepped over me to go to the bathroom. His thoughts are his needs, he wants to eat, he wants to go home, he wants air conditioning off, etc. He can be very demanding when he wants something.
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MicheleDL Aug 2022
Yes, I've experienced that too. Early on my husband and I were standing together on ice. I felt like a cartoon when both my feet slipped, zipping this way and that (time enough to be grabbed and steadied) but I went down hard. He just stood there and didn't even extend a hand to help me up once I hit the ice covered concrete. He was not like that before his illness.

My friend has an autistic middle aged son. She's handicapped. If she drops something he just watches her struggle to pick the item up. My man has become like that too with Alzheimers disease. No sense of compassion, except for animals, come to think of it.

It's a major disappointment and huge loss to have a manly gentleman transform into a child.
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There is always something new (to me) to deal with. Just when I think I've got a handle on everything....that goes out the door. Currently husband's appetite has dropped pretty low. Having cared for my mom with end stage cancer, and pre-existing eating issues (oh-the stories), I have a few tatics to deal with this*. Otherwise, it would be so nice to have maybe four or five days when things here go fairly smoothly.


*If I make my power pudding, will post the recipe, all from scratch, obscenely rich and really, really goood! : )
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I probably already posted this, but INCONTINENCE bothers me most! Why? On call 365/24. Every couple hours escort to toilet. INCLUDES ALL weekends/evenings/nights/holidays, my birthday! If you slack off even a bit you risk UTI, diaper rash, sores, ACCIDENTS, secret accidents, messes, urine stench, your furniture, your car, criticism. So, don't slack off. And the laundry. Pants and more pants! Socks...who knew? And shoes. Not to mention bedding and pads, the FLOOR. Washing netherbody parts in shower, sitz baths, sponge baths. Then clean the toilet, the toilet AREA and commode and UNDER THE COMMODE. The trash. The trash. The trash. The cost of incontinence supplies is as much as the rest of her groceries combined: pullups, nighttime pullups, liners, barrier cream, wipes and more wipes, tissue boxes upon boxes, paper towels, gloves, trash bags, commode bags, laundry detergent, Odoban. Without incontinence, caregiving would be an entirely different adventure. Thanks for letting me vent.
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Usedup1959 Jul 2022
You described this perfectly. I couldn’t believe/describe some of the messes I had to clean up.

Sometimes the bed and my mom were so soiled there was no clean spot to move her to so I could clean her up. I had to just throw some of the sheets away. I wasn’t going to try and save it. The floor to as you mentioned. And all for the person who told me to NEVER ASK HER FOR ANYTHING.

My mom died in October on my birthday. I’m sort of over the trauma of the messes I had to clean up but there was so much more to her care. It was a very complicated situation and I don’t know if I’ll recover from that in the light of how she was not willing to do anything for me. Not that I even would have asked.

My vent moment.
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1 thing I want to mention is, the financial aspect of being kind, caring, helping your elderly parents.

1. You’re very likely going to get poor.

2. You’re very likely a woman.

3. You were very likely (even before caregiving) poorer than your financially well-off siblings. There are exceptions: but basically if all your life you’re kind, sweet, caring, you’re likely also not rich; whereas people who are un-caring, ruthless, amoral, don’t mind kicking others on the way to the top.

4. It seems the kinder you are in life, the poorer you’ll be. Indeed, women tend to be exploited: financially, and with their time (let’s dump all the caregiving on YOU).

From one woman to all other women here:

Please don’t get exploited.
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Ojrenee Jul 2022
Just the word poor seemed to bring out the most horrid treatment from entire family members. Working like a dog cleaning, painting yard work cooking any job they didn't want to do was given to me for little to no money, or promise of payment that never came. Used as a door mat, talked down to n behind my back. Caring for my mom while dad drank played lottery n left mom w me out of state at a young age. I would beg him to take her back home n explain I'm single mom who tryed college n jobs but never seemed to be my able to keep afloat due to always owing my dad back 2x the money I borrowed never consider I cared for mom almost full time always tired no relationships worked out, sibling using me as a work horse no money. My kind heart gave n gave. Long story short sold my home moved back to my home state w mom's health worse bought a fixer upper which is still fixer upper mom died 8 years ago whom dad started showing declining health but after 21 years I sacrificed my relationship w my children, my freedom or all that come with having n taking care of oneself. Dad dumped all his responsibility of his pay bills n paperwork were he had no worries I wouldnt do a good job while he helped neighbors, strangers n squandered his money on lottery n liquor while never paying me for all the hours. He died after 8 years of abuses mistreatment, disrespect, gaslighting to point of brain fog, he had done everything he could to take what little bit of money I had. End of life I put him in a nursing facility n am hated from entire family whom never not once helped w mom's care or dads but threw me under bus n talk bad about me. Well he died a week ago n I'm relieved, wrote off the rest of family members who watched my failing health treated me worse then their pets n wasn't even mentioned in his will. After 29 years I'm now filled w so much excitement about life n what I'm going to do w it but mentally emotionally n physically drained. I question myself as to why I would give the best of myself to people who treated me like ****. Hopeful one day I can forgive myself for wasting all the years I did when it was never appreciated n I'm hated.
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It drives me insane when we go day after day & month after month without anybody (family &/or friends) coming by or even offering to help in any way at all especially when they know that's the only way I get a break is if someone comes to sit with my grandmother & let's me get away for lil bit to recharge myself & help prevent burnout, also knowing I'm not gonna ask for help either but we still go months at a time without seeing anybody but I swear the instant my grandmother gets admitted to hospital or rehab facility, then everybody is popping in on a daily if not multiple times each day. I mean really people it'd be nice if u maybe did it regularly & not just when something happens. It might even prevent some hospital stays bc I'm sure it affects her body & mental health both when we go the long spells without seeing anybody & makes me so mad bc truthfully they are not realizing by only coming when something happens & then showing up every day for the month or 2 afterwards they are putting it in her mind that when she ends up there then she gets to see em every day so she could very well start doin stuff causing herself to end up in hospital or rehab & that's not a good thing at all. Not smart & they act like I'm horrible for not staying up there constantly. No I'm not trying to have her wanting to be there more than at home.
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venting Jul 2022
I totally understand you.

“they are not realizing by only coming when something happens & then showing up every day for the month or 2 afterwards”

By the way, they totally realize what they’re doing. But they don’t want to look too bad. They could also choose not to visit at all when she’s in hospital: but then they would look really bad. And maybe they’re hoping for inheritance? Trying to make sure she doesn’t cut them out of the will?

Of course they realize it would be better for you, and for her, if they visited regularly at home.

Why don’t they do it?

Because they want to do the minimum.

And if they visit at home (and if you take a break), then THEY must do the work!

If they visit in hospital, they don’t need to do any work: the nurses/doctors are working.

Your absent family members are SELFISH and exploiting you.
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I've been with my mom since Jan 2020. And as soon as I sit down she is asking for something meaning get up . But the worst thing for me is she starts talking or rambling during the climax of a movie that we have sat there and watched. And the fact she is an know it all.

Doctor appts, dentist, blood work, chores around the house, grocery, clothes, etc
I feel burned out a lot, I think I may be depressed.
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BurntCaregiver Jul 2022
Lorie,

My mother is also a know-it-all who sounds exactly like yours.
Finally, I reached the end of my rope after a lifetime of her dysfunctional and abusive behavior. So now, she can figure things out herself.
Do as little as is safely possible in your situation and go completely 'Grey Rock'. This means engage her on only the most basic level. Ask only yes/no questions. Do not have conversations with her. Do not watch movies with her. Do not do anything with her.
When she gets lonely and starts asking questions tell her.
You feel burned out because you are burned out.
I know that living with my mother and caregiving has almost killed me. Did you know that something like 50% or so of caregivers die before the person they're caring for?
Enough is enough.
You definitely have depression. Meds are not the answer for it because that doesn't fix the problem.
Please forgive me, but you live with an a**hole who you are a slave to and it will ruin your life.
I been there and am currently still there, but I'm leaving. You should too for your own sake. No amount of potential inheritance is worth it. No amount of guilt or obligation is enough to justify enduring what so many caregivers live with every day.
Walk away. You will not be wrong to so.
People should think of caregiving for an elderly parent like they are part of a couple. A type of marriage if you will.
When a couple is so miserable together that they've grow to hate and resentment, they divorce. Sometimes they divorce so it doesn't get to the point where there is hate. I divorced my first husband before it grew into hate. Society accepts this. Their kids (if they have them) in time come to accept it as well because it's what is best for everyone.
Adult children who are caregivers to an elderly parent should think of it this way.
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I feel the same. Endless chores and I’m not really sure she gets it on my part. My mother was diagnosed with paranoia schizophrenia when I was age 10. I gave up a lot in my life for her illness and it destroyed my dad. He remarried and got a life but he never stopped caring for her. I now an 68 and she is 93. Trips to doctors, worrying if an aide will show up, keeping track of timesheets, groceries, med refills, nurse appointments, blood appointments, the list is endless. She says she cares about my well-being but does she really when she takes a tantrum when she doesn’t get her ice cream or hair spray. I’m an only child. When do I get a life?
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LorieS3417 Jul 2022
You poor thing, I dont think I have it as bad. My marriage is taking its toll. My husband just got a job out of state and he wants to move me there. I feel Im here for a reason and that is for her. Its only been 3 yrs.
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Just need to vent. Haven’t been here for a while.

Why, why, why do I have such a manipulative, difficult, cruel family member in my life? Someone I can’t easily cut ties with, of course, otherwise life would be too easy…Why (I’m screaming this in my mind, with some tears) is my fate like this?

Maybe evil people are attracted to good people…they need good people to use as their targets…I bet if I were evil, a lot of bad people would stay away from me…So is that the price of being a good, kind person? That you’ll always be the target of some evil family or non-family member?

Horrible how some people treat others.
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Im with ya!!! It gets old...
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One thing, is the absolute lack of privacy, and feeling some days like I have to explain everything to everyone 24/7
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Gleoni1411 Jun 2022
I am 53 been doing this for 10 years. I understand you 100%... Sometimes I feel like I am 15 years old again... Can't even leave the house without having to give a big detail about where I'm going, when I will be back, what I'm doing... Ugggg
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I *think* that my efforts were appreciated at the end, and I feel like a stronger person for having been a caregiver (I mean, if we can do that we can handle anything, right?}, but my absentee sibling was never criticized for doing nothing. And his share of the inheritance was equal to mine. Sorry, I should’ve gotten more $ than that a**h*** did. Like all of it. I don’t care if that sounds petty.
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Gleoni1411 Jun 2022
Omg same as me.. He strools into town sees my Dad and back to his life... His friends, Wife, Job, New home. Only calls my Dad once a week for not even 10 minutes but he sure will be here at the end to get his inheritance.... A joke...
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The most? There's so much to choose from, though! I think what bothers me the absolute most is that I am nobody. I think it's who I am, not just how my mother treats me, though, as everyone in my family (except one brother) asks too much of me and gives nothing - NOTHING - in return. And no one gives a rat's ass if I'm unwell. That, and the fact that I feel selfish even saying this here.
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LH1971 Jun 2022
You are definitely not a nobody, my friend!
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Caregiving for an Alzheimer's patient is so boring. I have to turn my brain off when I see my mother. It is just an endless round of same questions and statements, nonstop, every minute, for hours on end. I'd like to put an icepick through my brain.

Granted mom was never a bright bulb, with a high school education and no career other than worshipping "dad," now passed on 4 years ago.

She should have cultivated friends, outside interests, hobbies, a career, additional education, something, anything to exercise her brain! But she didn't: she let "dad" do all her thinking for her, and now since "dad" is gone, I and my brother are her entertainment.
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OMG, his stubbornness! We would check on him twice a day, since he insisted on living alone, stubborn old coot.

I would walk in with his medicine dispenser and ask if he’d taken his morning medicine, he’d say yes. It was still in the dispenser. He would argue till the cows come home that he took it! I’d say ok, time to take some more, then he’d argue THAT, saying no he only takes medicine 4 times a day.

Back in the afternoon - repeat the argument. Happened 3-4 days a week.
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That’s an interesting question! Personally, the fact that when I wasn’t at 100% capacity I still had to give the utmost respect even when they were verbally abusive to me( just plain out right mean and nasty) that along with the physical aspect is and can be overwhelming!

It takes a certain kind of mentality to give care and that mentality has to know how to keep it all together because it can be stressful. I always had to say” treat them the way you would want to be treated “ but, there were some times I just couldn’t include a smile… lol

You have to step out of the storm and redirect your emotions then jump back in and navigate but always with love and respect!!!
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The one thing that bothers me most are people who inflict toxic positivity and mewl about their “gratitude” as an escape for confronting any long term plan. I especially hate it when they posit it as part of a fun family activity.

If you have to get someone to sort your pills for you, that’s going to be likely to continue even after the immediate intervention is over. And pill sorting is just the start. There’s the driving. The toileting. The fall risks and more operations and the AND AND AND. With minimal consideration to the child or their needs other than to say they are “grateful.” It’s just another shame and deflection tactic on their part.

My in laws were treated aggressively for cancer and stroke respectively. Now neither of them can walk. While it is their right to keep demanding ever more exotic and or risky procedures, it is also their responsibility to take responsibility for their decisions, both in the short and in the long term.

If they wanna go out of state for the newest thing they can’t get here, then fine, but we can’t be part of it. We can’t just give up our jobs and obligations and lie that it absolutely is no problem.
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