What is the one thing that bothers you the most about caregiving?

Loss of freedom. Also family criticism and interference. I’m taking care of my 4th dementia LO. I firmly believe that it’s important to get professional care before we get sick ourselves

I feel like I am on a roller-coaster that won't stop. My mom lives by herself in a 5 bdrm house. She has it packed with so much "stuff". That in itself is overwhelming to deal with on a daily basis. She is 87 and has Parkinsons, a really bad issue with incontinence, I take trash out a couple times a day. So many things need to be done, and it gets more difficult trying to accomplish anything. Also having my own home, I have neglected so many things needing to be done there.
I only have one older brother who is still raising kids and lives in another state.
I would love to just have maybe 2 days a week just for myself, but my mom expects me to take care of her. I am totally burnt-out and actually hate having to go to her house everyday. There is so much more I could talk about, but it would take to long

I've answered here before but due to the ongoing overwhelming decline of both of my parents I realize that there is a new "worst" every couple of weeks, even worse than the last one.

I was invited to a small gathering with friends on the weekend and though I'd found someone to take over for a couple of hours I simply couldn't bring myself to go to the party but stayed in bed instead, lonely, tired and miserable.

I was too burnt out to even dress up, and I felt like I would have nothing to say to my friends anyway, nothing to share (since nothing seems to happen in my life apart from my parent's daily catastrophes), and I was so afraid of feeling even more lonely among a cheerful crowd of "human beings with normal lives" (!) that I chose to stay home... :(

I guess it was the wrong decision, and maybe it would have turned out to be a nice uplifting evening. But I simply could not bring myself to risk feeling even more alienated from the rest of the world, being the dark hole amidst a cheerful crowd. It would have only added to my despair (and my self-loathing for being so depressed).

Sometimes it seems easier to pretend that there is no world outside of care-giving. Can anyone relate to my pity-party?

Lots of things are hard to deal with. The loneliness. Having all the responsibility of managing his care and our home. When I'm speaking and he begins to speak over me about a totally different topic. Him asking me for things the moment I walk in the door from say, grocery shopping. Telling me he wants something to eat. I prepare food and then, he says he's had a snack and doesn't want to eat anymore. Feeling that I'm on a daily treadmill of repetitive work, providing for his needs and receiving nothing in return. It's a hard life.

I'm tired a lot of the time. For the usual caretaker reasons. Stress, sleep issues, and hardly any respite time. I just have to have the wherewithal to get respite started. Husband's decline has been slow, perhaps that's why I'm not taking respite time seriously.
This is my second stint as a caregiver, so I know down time is critical.

My God I love you all for making me feel less alone and more normal. I guess right now it’s the repetition of stories and questions, misplaced items I have to find and the loneliness because nobody who hasn’t been through this gets it. And the best part is all of you who get it and many who have it far worse.

Feeling trapped.
Being actually trapped, come to think of it, in a rotating schedule that never ends.

Repetitive questions, complaints, or comments. Around and around we go again.

Sitting in this darn chair next to her, and hating it because I WANNA GO HOME.

Her darn cat - her baby, and her endless, "is that my baby???" 5 billion times a day.

And those nights - jerking awake two or three times every night to that bed alarm - oh my gosh I'm gonna have a heart attack.

But I love her so.

LOL Marialake, thats hilarious! (and true)

The thing that bothers me the most is the fact that they want attention ALL the time... I moved in with my dad (alzheimers) and mom (cancer survivor) and theyre 76 and 82 resp... They get bored easily, call out about the tiniest things, stroll in on online meetings, want to talk about their life, text me demands (I dont always answer.. hey, i got boundaries).... I literally put a lock on my door not just 1 hour ago to help address the meeting walk ins... I even installed a baby gate on the stairs to my room but dad just climbs right over it (so dangerous at his age but he don care!)

I joined here today and I’m somewhat relieved to see from the many questions and replies that I’m in the right club🙈. I’m a newbie at caregiving; it’s certainly not for the faint hearted. My Mom is totally deaf from the age of 6 (through meningitis) so communication; difficult at best has an extra sting to it. You read that right: “sting”. We use sign language and lipreading but it’s still very difficult. As a child if my Mum wanted to punish me, she would cut communication by ignoring me. Speaking of course was pointless because she couldn’t hear me, so these memories are painful. She still uses this method if things aren’t going her way:( My Mom has been with me a year since she had one fall too many. She has a little senior dementia due to age but her mind is razor sharp at 90. What I find hard is I never know from one day to another which Mom is in residence? Sweet, kind Mom who loves to bake cakes and reminisce about the old days and asks if there’s anything I’d like to buy/her treat, or…..mean Mom who is constantly moaning, complaining and/or winding me up-to the point where I zone out, glassy eyed; and I’m having a machine gun fantasy moment like David Naughton in “American Werewolf in London”. It’s night and day how different she can be? Is this normal? Probably! It’s none the less upsetting and extremely disconcerting. My thoughts drift to: how long is this going to go on for and what can I do to circumvent the stress? I do everything I possibly can to make her comfortable. We had a disabled shower room conversion done. Everything is on one level. I drive her to all her medical appointments. There is nothing that’s too much trouble…so I don’t get it really. Yes our roles are reversed but she can no longer live by herself and does not want to live in a care home:s Today I decided that I need to set boundaries. I put one into practice last night. I made arrangements for Mom to be supervised and explained I’d be doing my own thing the next day without further explanation and then arranged for my sister to come take her to her place for a week. I am suffering with anxiety and I have not felt like this for years:( All down hill from here? :(:(

PART 2
dear lavenderbear,

of course, you ARE a kind person. please understand what i'm saying :).
-----

abuse....

remember, it's not YOU.
you aren't the cause, at all.

lift your self-esteem!
you're a wonderful person :).

-----
i write here again, my Calvin & Hobbes joke.
very relevant for us :).

Hobbes:
What are you mad at ME for?!

Calvin:
Get away from me! I don't even want to talk to you!

Hobbes:
YOU broke your beanie motor, not ME! I didn't do anything!

Calvin:
You distracted me!

Hobbes:
I did not! I was just sitting here! You broke it all by yourself!

Calvin:
*sniff*
*sniffle*
...All right...I know...
But considering my life's in shambles right now, couldn't you at least take the blame?

PART 1
dear lavenderbear,

what a sweet person you are -- and how terrible your mother treats you.

"Being screamed at, being yelled at constantly. Everything I say or do is "wrong" according to her. I've lost my self-esteem"

:( :(

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all this screaming/criticizing IS damaging/brain-washing.

it affects everyone!
-----this is why, athletes for example, are brain-washed in the other direction ("you're wonderful!"..."keep going!"..."you're doing great!"...etc).

why?
because it works.

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other people's positivity affects us!
other people's negativity affects us!

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you know what? our minds are so strong, that even positivity (which is actually a lie) will affect us!!
...an athlete (tennis) recently was told a total lie by the coach (something to help the athlete; but it was a total lie) (the lie was something positive)...the athlete (gullible) totally believed it, and ended up winning! :) before the lie, the athlete was going down-hill, totally losing.
...it was nice of the coach, because it was done just to help.

----------

i've never done tennis in my life.
:)

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no matter how strong you are, other people's words/behavior WILL affect you.
(positively and negatively).
even people's (negative and positive) words on this website will affect you. so, be careful.

hug!

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you have such a sweet name (lavenderbear), there's simply no way you're not a sweet person.

-----

you're tired of useless suggestions.
i understand.

from my own experience...
even if you try to block things off, the reality is that our parents' abusive words DO affect us.

the ONLY solution i have seen that works, is to reduce contact.
i see no other way.

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your mother lives with you, so reducing contact is harrrrd/impossible?

but the only way i managed to feel ok again, was by reducing contact.
i needed weeks to recover from the abuse, to finally start smiling for the 1st time again.

now i have low contact.

i adore my LOs. in a million ways, they're amazing. INSPIRATIONAL in a billion ways.
unfortunately, sometimes, my LO is abusive...

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it'll never stop, lavenderbear.
they want CONFLICT.
you want PEACE.

those are INCOMPATIBLE goals.
INCOMPATIBLE.

you feel good with peace.
they feel good with imposing conflict/anger/frustration ON you.

understand that they want the opposite of what we want.
that won't change, because that's what makes THEM FEEL GOOD.

abusive people tend to have moments of being nice. but the abuse will ALWAYS come back --- because IT MAKES THEM FEEL GOOD.

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i don't think it works to create an armor around you, or to try to let the words bounce off you...

abuse WILL get you down, damage self-esteem.

ah, another thing i found useful (you see, abusive people always blame YOU), is to say, "it's because you're having a very hard time right now, that's why you're behaving like this."

(this makes abusive people scream even more, denying, trying again to say, "no, it's YOU!")...

but the point of that sentence, is for them to hear it AND for you to hear yourself say it. to re-affirm out loud, that YOU are not the cause.

----
remember also, that abusive people all over the world, do the same thing.

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by the way, kind people all over the world, do the same thing too :).
helping, encouraging!
:)

and................helping themselves :).
one is only really a kind person, if one is also kind to oneself.
otherwise one is a mean person. (mean to oneself).

i remind myself of that, when i'm the target of abuse...
"hey, wait a second, i'm actually a mean person. i'm nice to other people. but i'm mean to myself -- i'm putting myself in a situation where i can be a target."
----of course, lavenderbear, none of us are actually choosing to be in a target-situation. and it's very hard to get away (especially if you live together! and especially if you're kindly helping, face to face, or on the phone, and get abused EXACTLY while you're helping).

My mother lived with me for 3 months and it was awful. She had no respect for boundaries, always needy and she didn’t care about my family needs. She expected my life to turn upside down and I was suppose to pay her way. I put my foot down and set rules, she left 2 weeks later. It’s all about money for my mother, she didn’t give me any money for her stay, not a dollar. My mother’s love is all conditional, what have you done for me lately attitude. I have no debt or mortgage, own two houses and I have my own business. The hard work and savings weren’t for me to give to my mother. If she can’t contribute a dollar, then I can’t help her living in my house.

What bothers me the most is how far and in between the good days are.

God bless us, everyone--In the immortal words of Tiny Tim. The moodiness of my mom is hard. She was never this way before to me. That my mom is not who I've always known her to be is probably the hardest. We don't know what is the matter with her and hoping to have answers after upcoming appts. I wanted to chime in and get it out of my heart. I love my mom. I'm having a hard time knowing what my life has become and how much she despises me at this point in time. Her paranoia is mind boggling. I don't so much care about how she acts and sometimes find it humorous and keep that to myself. Her teenage like behavior is cRAAZY! I realize this is not the loving person she once was. It is just hard no matter which way I try to roll it around in my head.

You can not rely on no one for anything; everything falls on you. You don't even recognize yourself anymore because you are a zombie.You get up and do things. You beg for assistance but no avail.

what bothers me the most?

i'll just mention a bit my awful, non-helping brothers.
one can do wrong through:
...acts of commission (action)
...and acts of omission (inaction)

for example, it's even possible to commit murder, by inaction.

of course, my brothers haven't murdered anyone.
-----BUT, i would describe them as murderous (through their actions and inactions).

it's simply crazy how much (zero) they don't help our elderly parents.
(by the way, i have in some ways managed to force them to help).
(but it's just that they don't want to look too bad).

in my mind, i call my brothers murderous.
in that way, none of their actions surprise me much. i think, "of course they'll behave that way...awful...because they're murderous people."

I was 24/7 Caregiver to both parents for four years. What bothered me most was to see their 'friends' disappear when they needed them most. My parents lived in a very active retirement community and had a large group of close friends for nearly 2 decades. But they all ditched them when my folks became less active. It was devastating to my parents. No one ever visited. No one called. They were no longer invited to holiday gatherings. They were just left behind. So very sad.

Feeling invisible! You care for your loved one, you organise everything. Cook , clean , wash them , deal with poop & urine. Do everything & anything. But noone asks how are you today? Instead it's how's your dad? Neighbours, carers, drs , nurses & anyone else. You are having a bad day, tearful & feeling sad. You put on a front & they just never ask! Never! I actually was in tears with how my dad has deteriorated & they look at you with sympathy but then go ok see you on such & such. It really does make you feel lower then low.

My life seems to have ended I’m taking care of other people. First my husband had a bad stroke 5 1/2 years ago we were just 49 and pretty active. My mom with dementia came to live with us 3 years ago. I don’t have brothers and sisters. The rare outings with my husband are more work than fun and the gatherings and outings with my adult children/ grandkids. are more work for me because they all want my time, to be waited on and entertained. If I’m not doing that they don’t want to just hang out. I don’t have friends. I gave all that up raising my family and then when that was done wham all of this. I don’t even have my own name. If someone sees me in the store they say hi “one of my kids name mom”. Or they say hi how is your mom or husband. I also work full time. Almost on my 2nd year away from the office due to Covid. If I don’t feel well nobody checks helps or makes it better while I’m down or for when I do get better. They just leave it till I can get to it. In short I’m super lonely and out of can do

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}.

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.

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.

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

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.

Losing focus on my own life. Persistent distractions from joy.

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.

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.

The grand annoyance is my mother's sense of entitlement.

I don't really care for putting compression socks on my mom every morning.

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.