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I don't have one particular thing...I have many things that I hate about caregiving.

*It is one more thing I have to do...no choice in the matter.
*I don't like the smells
*I don't like that I have to struggle to find things to talk about that won't create worry for her or for her to create some delusional story about
*I don't like that for 10 yrs now I have watched her become a stranger
*I don't like that the quality of care she gets is dependent upon how much money she has
*I don't like that my brother is fine with it all falling on my shoulders
*I don't like that in the not so far away future, I could be her and my daughter will be searching this website for answers and solace....
*I hate how pitiful I sound when I say / think these things because I am truly blessed and truly grateful for my life
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anytown Oct 2022
'I don't like that my brother is fine with it all falling on my shoulders'

change 'brother' to 'siblings', and you pretty much have my story
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I assume it's similar to taking care of a baby (I am not pregnant and NEVER plan to be!)

Caregiving is exhausting
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BurntCaregiver Oct 2022
It is absolutely nothing like taking care of a baby. There is actual joy in taking care of a baby. Babies aren't snide, instigating, narcissistic, selfish trouble-makers who enjoy spreading misery and negativity around.
When someone is taking care of a baby and they need a break, they can put the baby in the playpen, or the swing, or even in their crib.
Who has a playpen for an old person with dementia that they can put them in so they can't wander off? No one does.
There is no joy in being caregiver to an elderly person with dementia. There's really not any joy in this job period.
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The fact that I hate it
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BurntCaregiver Oct 2022
Amen to that, PandabearAUS. Most of of do. Caregivers like me who did it for work for a long time can tell you. When it's your job you go home at night.
For a few years it's been my paying then I come home to my other full-time caregiving job at home for my snide, gaslighting, verbally abusive mother. I thought for sure that I'd die depression living in such misery. Then the universe dropped me a blessed treasure in the form of my ex-husband.
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As a live in caretaker I miss my life, my own home, and my freedom. The constant drudgery and the uncertainty of how much longer it will go on.
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BurntCaregiver Oct 2022
Claudia,

Let me tell something, my friend. You only get one life. That's it. If you're unhappy on the constant drudgery of live-in caregiving, get out of it right away. Go back to your life, home, and freedom. It's not worth whatever you're being paid.
Remember something. No man has ever been rich enough to buy back one second of time.
Go home now. Your client isn't that important. They or their family will kick you to the curb with alarming speed if they find someone who is cheaper or some illegal who will work for next to free. There is no loyalty between employer and employee in this line of work.
Take your life back and stop being a live-in.
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First of all, I feel privileged that I am able to help care for my mom at home full time (I am on intermittent family medical leave from work) after her sudden diagnosis with cancer. I do all the shopping/cleaning/cooking/transportation/laundry, etc. in addition to working from home. However, my sister is in Ohio and has not even offered to help. Honestly I have been so despondent during this time because of my mom's diagnosis and functional decline and my mind is a huge mess. Yesterday my mom got so angry at me because I didn't open the sealed plastic over a 6 pack of bottled water with scissors but instead with my hand (creating a messy opening in the plastic), she called me lazy, then said she is trying her best and obviously I am not trying my best to help her. She now wants me to look at assisted living facilities, because she used to have a positive opinion of me and is now disappointed in me (she said she knew I was not up to par because I was unable to wake up before her at 7:30 am to make her breakfast on a few occasions), and doesn't want to burden me with her care, since I obviously am resentful of having to care for her. The thing is, I have been trying my best, and I am not resentful in the least. If I even try to defend myself or respond to her comments she tells me to shut up and to stop arguing with her (she then says "you never accept responsibility" -- however it's the opposite, I end up blaming myself for everything). Sorry this ended up being a long winded reply, but I guess the thing that bothers me the most about caregiving so far are the hurtful comments and misunderstandings that can arise despite our best efforts. Anyway, thanks for listening and providing this compassionate forum.
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CarlaCB Oct 2022
OMG ellabee, I'm so sorry! You are taking care of someone full time and she is calling you lazy and saying you're not trying your best to help her? That is so awful! You are doing a heroic job! And a thankless one! I'm so sorry you're not getting the appreciation you deserve.
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I have a list of things that bother me about caregiving. I take care of my grandmother. My father’s mother specifically. Her and I are the last of the family as everyone else has passed, my father doing so when I was 13. We’ve always had a special relationship before I was forced into care taking for her after my aunt (her former caretaker and daughter) passed away earlier this year. My aunt was unhappy being her caretake as well and I never understood why she was the way she was until I had to step in. Now I get it. What bothers me is her manipulation. Her use of “language barrier” to try and her away with saying shitty things and being a shitty person. Never taking accountability for said shitty behavior. Calling me a liar for asking her to talk to me like I’m a human being. Claiming that I’m trying to get her mind side tracked so she can be looked at as senile. She harps on me for forgetting things as small as a sales paper. You can’t bring it up to her though, because she just says she never does that. Her sly comments. I’ve held my tongue for such a long time and when I finally say enough is enough, I’m told I’m showing my true colors. The sense of entitlement. The fact that I’ve dedicated my entire life and put my family on the back burner and get she can still look at me and say I don’t ever make time for her. “I NEED you to make more time for me, I have to get these things done.” She lied to me. She told me I’d only ever need to stop by for a little bit and then I can go. She lied and I left my career. Out of love. And as soon as I got in there, I was her servant. One day I was her literally servant while her friends were in town. I hadn’t eaten much that day. I have my own health issues, she knows this. Her house was 80+ degrees and she was practically snapping her fingers and ordering me around until my partner stepped in. I’ve neglected my partner. I’ve neglected my three kids because I’m there at her beck and call every day. Two of my kids are toddlers. I’ve lost my identity. I’ve lost the will to do things I love. I took a $1000 pay cut to take care of her. I finally worked to get a career and stopped living paycheck to paycheck just to get roped in to caretaking and having to cross my fingers I’ll make rent. Today I told her it was time for her to call a company and that I was leaving. She spoke to me as if I was wicked and that I was to blame for wanting to leave.

Most of all, I hate that I care so much after all of this. She’s all I have left of my dad. I’ve rambled. None of this is coherent. But I haven’t been for months. I’m just happy to get it out.
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Jamesj Oct 2022
I am glad you are getting out. No one understands the mental exhaustion of caregiving if they've never done it. No one understands how cruel the elderly can be in this stage of life and bad health. I know you love your grandmother and don't want to leave her high and dry. Maybe you can tell Grams that you need to take care of your children and you will be connecting her with a social worker that can help her find in home care.
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Exhaustion......Flat out exhaustion.
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For me, it's that my Mother complains about mine and my brother's care of her to her sisters which are all exaggerated lies. She makes things up and her sisters believe her, even though they KNOW she lies all of the time! She's always made things sound worse than they are because she's always been the "victim." It's so frustrating because we bend over backwards to care for her! I just have to remind myself that she's out of her mind and will make anything up just to get attention. It makes it difficult to want to tend to her every needs sometimes 'cause your damned if you do and damned if you don't! It's a no win situation. No one signed up for this which is hurtful and exhausting!
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anonymous1582493 Nov 2022
I wonder how common the behavior of lying to get attention is. This can be really dangerous if it gets out of hand (like abuse accusations).
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And honestly, killing yourself doing all the little (and big) things they can't do anymore and being reminded that, out of the 99 things you did that day, there was one you didn't. And that's the one thing they remember.
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anytown Oct 2022
'being reminded that, out of the 99 things you did that day, there was one you didn't.' Absolutely. The story of my situation (get it from siblings etc though, not the parent)
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I'm taking care of 2 elders now, and they're family. But one can't seem to say anything at all that is not a snarky put-down or complaint against the other one. I realize this rivalry goes back more years than I have been alive and it will unlikely change. But it gets so OLD trying to find joy in my days when I can't have a decent conversation with them for this childish nonsense. It's ALL THE TIME. Nearly every breath. The second I walk in to the room, the complainer starts with, "She..." and it is never good. Honestly, taking care of them is a breeze compared to being saddled with this crap every day. I am getting to the point that I don't want to be near either of them and it's sad. It's exhausting. I would stay outside all day if I could. Makes me feel unappreciated. And trying to address it brings more misery (think Eeyore from Winnie the Pooh).
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BurntCaregiver Oct 2022
@Jackson

Maybe it's time to start looking into managed care placement for the two elders.
You do not have to live like this. Lay down the law. When one starts up with the 'She....' cut her down before the complaint can even be spoken. Please practice the following response. Say it over and over again until it becomes your mantra. Put your hand up and repeat the following:

'Shut up. I don't care what (She) has done. I will not tolerate your complaining and sniping anymore. If you cannot keep your nonsense and whining check, I will not take care for you anymore and you will be put in a nursing home'.

Repeat this as many times as it takes for it to become part of you. When you sense a complaint beginning, put your hand up and tell her that you will not tolerate complaining or fussiness. Then ignore her completely for a period of time. Do nothing during the ignoring period. No food, nothing to drink, no care whatsoever. Do for the other one though and let her see you doing for the other one. She will curb the complaining.
If not, stay true to your word and have her placed in managed care.
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I am 1 of 7 siblings, my mother asked to move in 11 years ago, she said because she didn't like her retirement community but she tells my siblings it was to help me after my divorce (help I did not need!) What do I hate? Being stuck in the house 24/6, 1 sister gives me a 24 hour break weekly but mom is so fragile I only take her out weekly to get her hair done. My brother has been in and out of prison most of his life and says this is what it feels like! Mom and I have always been close but at this point mom is gone, I just want a life!!!
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Nina1965 Oct 2022
My heart goes out to you. I completely understand your frustration with your siblings.
My mom moved in with my sister after she was diagnosed with onset dementia & stopped caring for herself. She stayed with me for months at a time to recuperate after falls, surgeries & illnesses because my sister works. Eventually, we moved her to a NH. She has improved greatly with medication adjustments & only needs supervision, meals & pill management. I would like to bring her here to live with me but, I don't want to burnout either. I asked my sister if we could alternate caregiving every 3 mons & I would come over days while she works & my mom can pay for a caregiver to fill in the gaps. She said no because it would be too much. So, I offered her taking 1 month every 3 months so I could have a break when I had an occasion to go to, I would go somewhere overnight & a weekend every month. She has not responded.
You are a loving daughter to care for your mom all this time. You have gone above & beyond caring for her all on your own. Perhaps it's time to seriously consider placement for your mom in a nursing care facility for your sake & hers.
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it..........never..........ever..........stops
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Well here is another one…..

When I am trying to do something for my mom and, at the same time, she gets impatient that I am not doing “something else for her” fast enough!
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Feelings of constant anxiety and worry is what bothers me most. I will admit that I do not care for my mother in my home, she is in a nursing home and my dad passed away almost a year ago. My dad was in his home too long with dementia and had started falling so I placed him in a group home where he lived for a year until he passed away. The nursing home where my mother is couldn't take him unfortunately.

My issue is that although I have three siblings I am the one who is responsible for everything and have received no help from them ever and one of my siblings does things to create more problems for me. The health issues with my parents started several years ago and I have been handling all the medical and financial business by myself and I am the only one who regularly visits my mother in the nursing home. I also have their house that I have been having to deal with by myself. My dad left a hoarded mess in there and everything is in disrepair so it is taking me a long, long time to get the house ready to sell. There are constant decisions to make and problems to take care of that I don't have the energy to take care of my own stuff. I am anxious all the time these days and find myself worrying about everything that can and does go wrong.

I do realize that this is a lot different from having a parent living with you and providing personal daily care and I really feel for those who are also doing that. I do not know how you do it.
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We finally got the relatives to understand we were not allowing them bully Mom anymore and should it happen consequences would follow. Since then, their behavior has been much better.
We still get asked to help them out but it is fewer and further in between.

What bothers me right this minute...
I made a deal with SIL to come over once a week to give mom a shower (while I was working) and I would pay her $20.00 to help with gas. ("money for gas" was her reason she needed to borrow money every 2 weeks,...)

Well, It has happened 1 time. ---

When I came down very ill for two weeks, her Dtr. came over only once to help give her mom a shower, I gave her $20.00 for gas, and I sent some food with her when she left. (She kept telling her mom how she was only eating noodles because she was broke, which stressed mom, so giving her food made mom feel better), but then we didn't see or hear from her again.

So, mom and I took care of each other. She would not ask for anything. Though I stayed by her in the living area, each time we had to get up, we brought drinks or snacks to each other as needed -- napped in our recliners.

Neither of us were strong enough to do much more than just keep other's company. The house looked horrible,... but we got through it.

Mom may not remember any of it, but I will.
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Nina1965 Oct 2022
Medicare will send a caregiver to give your mom a shower 2 times a week. Contact the Dept of Aging in your County.
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The thing that bothers me most is the unpredictability but I’m a caregiver to someone with dementia so that may not be an issue for everyone. I hate not knowing what mood I’ll be dealing with, what level of care I’ll be providing, what mess I’ll be cleaning up, what objects I’ll have to hunt for that day and where they might be and what delusions, hallucinations or psychosis I have to manage. It’s mentally, physically and emotionally exhausting.
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Everything. The isolation. My life, freedom, privacy and my future. The mom I used to know doesn't seem to be there anymore. I'm grateful for this forum. Hugs to all of you.
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Family, work colleagues and friends all tell me to take time for myself. I don't think they understand. It's not that easy. When I do, I feel incredible guilt and my DH will text me constantly while I am away. It's almost worse. I understand it is important, but easy? Nope.
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anytown Sep 2022
I also get tired of that. The absolute last thing I need, is one more clueless person 'telling me what to do', as though I were too stupid to figure that out for myself (take time for myself), and them not realizing that if it were possible, I'd already be doing it.
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My own impatience and yelling.
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Mjiotti Sep 2022
I feel the same. And resentful. My husband has dementia that hasn’t gotten too bad but I work full time in a demanding hospital. He is much older than I and thought he was the king, made poor financial decisions without consulting me and now I am forced to work rather than retiring. I am 65 he is 82
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The feelings of inadequacy and unjustness. Being too harsh on myself and not being able to recognize how much work I'm putting in. Struggling to say no and establish boundaries, while simultaneously knowing that nothing I do will ever feel like it's "enough".
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Treat her like the child she's acting like! When she tells you to do something, tell her not until she shows the respect of saying please, then after you do something, make her say thank you! Make her do anything that she is capable of doing herself! Respect is not something that you ask for..... you demand it! Just my two cents worth!
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I hate being a caregiver. I was dragged kicking and screaming into this. I hate my parents for expecting that I have to do this for them. They never had to do this for their parents. I am repaying them for having been born and frankly right now, I wish they hadn’t bothered.
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bundleofjoy Sep 2022
i understand you. hug!!!
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My mum have late Alzheimer, Dementia at 92 and it was very sudden I never expected cause she was so healthy always lived alone, did everything by herself she was having hallucinations really bad from than on it was a nightmare..she had to stay in a very good private hospital over a month which they put her on medication so she was much better but not my old mum anymore..for a long time I was angry, resentful cause my whole life was changed to look after her she was never an easy person before and now was worse..in 3 months I had 2 nerves breakdowns one about not wanting me to hire a helper second about money..she was always complaining about my spendings..since it's been 3.5 years now she is bedridden and just lays there very quiet and I feel so bad that I was yelling her arguing ext.why din't I just ignore her and not get angry she was sick after all..I guess I just didn't see her sick because she didn't look like.Now I accepted and understand about this horrible thing called Dementia and I am relaxed and handle things calmly because more you get aggressive worse they get,never rise your voice,always kiss ,cuddle give alot of love , affection say nice things ..these are the best medicine believe me..so maybe next time she breaks something and wants it just say nicely and with a loving voice oh is it broken my love it's ok don't worry (in the meanwhile put arms around her and kiss)I will get you one as soon as I can and suddenly change the subject like what did you do today or would you like a cup of tea ext.they need to feel they are loved,secure..I always tell my mum that I will never leave her and kiss and cuddle her all day long she is very happy now.remember there will be time she will maybe can't talk anymore😔I understand that the are very tired try to get some help few days a week maybe..
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Having to put up with my mom's ridiculous demands and not being allowed to go out for fun and meet people

It feels like prison honestly

I desire true freedom and autonomy!
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on a scale from 0 to 10, today was 😡.
(i had to deal with a mean person) (had to be done; conversation; might as well be now, rather than later.)

anywayyyy, somehow things will work out. i like that quote from the cute movie “shakespeare in love”:

“allow me to explain…the natural condition is one of insurmountable obstacles on the road to imminent disaster.”

“so what do we do?”

“nothing. strangely enough, it all turns out well.”

“how?”

“i don’t know, it’s a mystery.”
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This is my second post to this question as these are so so many things that bother me about my 98 year old mother but at this moment I can’t stand it when she burps loudly and doesn’t cover her mouth. She lets it roll out and seems to enjoy doing it and yet she was so strict on us as kids about our manners.
This may seems trivial.
l wish I could ask her to cover her mouth but it would cause an atmosphere. Mom has most of her faculties but she’s totally immobile so depends on me and carers coming in. Elderly folk get excessive indigestion and wind. I wish I didn’t have to hear her burps see her very saggy skin or wipe her bum when she struggles. Getting old really sucks.
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wishing us (kind people on the forum) justice. i think many people are being exploited, taken advantage of, used.
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Louise4 Sep 2022
You are right. I try really hard to focus on the blessings.

I have the privilege of caring for my MIL in her time of need. It's hard work on many levels...but it has its many rewards too.

Peach of mind for one...no one else cares for our loved one the way we do.
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FREEEEEEEEDOM.

I want freedom. I feel like the Scottish protagonist in the movie “Braveheart”.
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Hothouseflower Aug 2022
Amen!
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The person I thought I knew is gone! My father, who was always kind, reliable, and supportive has become a stubborn jerk who refuses to cooperate. I understand he feels like he has no control, but the truth is none of us have any control and it often feels like he is deliberately doing the opposite of what therapists and doctors tell him just to be difficult.
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sending more courage to us all.
🙂🙂

what bothers me the most? that caregiving affects you in every way (in particular the more problems there are; and the more psychologically difficult your LO is).

i’m lucky that i can work (almost entirely) remotely. i work on my computer - can go anywhere, open up my laptop and work. i can work outside in the sun, in a cafe, in my house, anywhere. sometimes i must go to the office.

yet even with this great flexibility, it’s very hard to work when hundreds of caregiving problems are thrown at you.

i wish us all to find good solutions in removing obstacles in our lives. i’m hoping to eliminate many of my LOs’ problems this week, for their sake, but also for my sake: so i can have a clear, peaceful mind and work even better.
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