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

So many things I didn't expect when I quit my job to stay home and care for my husband full time after a stroke/TBI.
I'm so thankful for this community of caregivers sharing thoughts and suggestions!
The exasperating behaviors resulting from significant brain damage! Like grunting, groaning, yelling out for hours at a time, including overnight.
Fighting off any attempts to provide personal cares. So its always a battle.
And finally - family, friends and neighbors assume I have time to take care of their needs, because they assume I'm at home all day with nothing to do! They have no idea how drained I am, physically and emotionally, every day!

The long goodbye. My mother is physically here but dementia and a whole host of medical issues have taken her mind. She’s in a care facility and I’ve limited my visits to once a week. That’s for my sanity. I miss her…

I second your one , Marialake.
took my dad to buy a new belt last night at Macy's. It was a demeaning experience. I need time to recover just from that one "good deed".

MIL. I feel the same about mine and know that she would be completely different if it was her son that was bleeding out.
Battleaxe is subtle. You are far too kind, IMHO

Omg, I feel the same way, they don't notice we're burnt out, dropping everything for them, sacrifice over and over, then they're just worried about their rug or cat, not a thing about me. I've been caring for my mother for about 5 years, none of my family have stepped up. I live 2 hours away, new marriage too. She uses me then treats me badly, talks smack about me to everyone now. I've had nervous breakdowns, I gained a bunch of weight (lost it now), half of my hair has fallen out and my health is now at risk because of her, BS.

Having to do it all on my own. I am 1 of 7 children, single, no kids, so obviously to my siblings I was the best choice to be mom's caregiver. Apparently to my siblings, I don't need to have a life. Been taking care of mom for over 10 years. In 2021 we moved and are now living with my sister and BIL. My sister has been a great help with the caregiving. I get a little time to myself now, and get a 2 week vacation without mom. It's better than nothing which is what I was getting before moving.

Depending on the situation ..
the word “ Caregiving “.

Sometimes it’s “ Assigned Servitude”.

It also breaks a lot of family relationships.

Justice pleasssse.

Seeing how narrow their world gets to be and how much it restricts my interactions. Watching the same TV program over and over because it seems new to them, having to answer the same questions over and over, being accused of not visiting even though I am there everyday, etc. I know it is not their fault but still…..

Have said it before, but need to say it again: let justice prevail. Pleasssssse.

It would be the first time I see real justice in my life.

So sick of the selfishness, lack of gratitude, entitlement, blaming and accusations. Tired of the manipulation, lies and negative cycles of thinking, that just aren't true.
I hate the word: Normal, that's normal. Ok cool that's normal how do we deal with it, we try and redirect, we try to be empathetic, what do we do with this?!
Tired of any conversation being a land mine whether it is us just trying to engage with her. Or others trying to engage with her, knowing or unknowing bringing up past things that is a major source of conflict. Constantly cringing waiting for the fight after others leave because they unknowingly created a conflict that we have tried so hard to avoid.
Sick of feeling guilty or made to feel guilty we know we have done our very best to provide the best of the best and make the best decisions possible. Yet there is nothing that will help her be happy or at the very least content.
Just as much as she didn't ask for Alzheimer with Dementia, we didn't ask to be abused!

I'm starting to hate it to be frank about it. I'm a paid caregiver. I'm sick of clients baiting me into personal conversations about how long I've worked and etc. Especially ones who have some sort of motive for getting information out of me and using this against me later on.

These people I'm seeing are strange. Years ago, I went into a job and did it. I did not get personal or was asked a lot of questions about myself. Clients knew I was there to care for them and allowed me to do a job. Now I'm seeing these clients want to have long conversations about their lives and problems. I feel like I'm being used as a sounding board instead of a home health aide. I want to get on with the work and maybe chit chat with them later on and keeping personal conversations at bay or not at all.

I need boundaries. I'm sick of people looking for me to be a friend and a therapist later to be met with lies and falsities being spread about me. I've witnessed a couple of them going back to the agency and lying. These are mental health cases, dementia clients along with needing personal care. I hate the agency in all due honesty that allows this type of behavior that later try to gaslight you and make you go back to these terrible clients.

Boundaries are needed in this field of work.

If any of you have some feedback on how to deal with this, you can send me a private message or hit me up here.

All I know is that I am quickly approaching burnout.

Stupid mistakes causing big problems.

Either my sister or I do our parents laundry, not the NH. The bins are clearly marked. But some idiot put took their clothes for laundering and is missing. At first I thought it was only my mother’s stuff but it’s my father’s too.

I am leaving to go give hell to the laundry department. It is not a trivial problem even though it seems it.

I am under enough stress. I don’t need this.

What bothers me the most? Half my family. They’re extreme bullies. Totally over the top.

Those with Alzheimer's dementia only have a sense of self. Sadly this is part of the disease. I tell my husband I'm not angry at him, I'm angry at the disease.

The person you love is pretty much "gone." Life became difficult when he no longer knew me or our children. I regret the times I was angry with him. He passed away several months ago. Treat your loved one with respect and try not to be angry. Once it's over, you do not want to have any regrets.

I hate that it is all about HER. Her needs, her issues, her sadness. Even friends focus on her..she is 90…I am 73…I get tired and sore also.She was always depressive…always complained and now it is worse…Sadly ONE of us has to die for this end!

I'm a paid caregiver. What I hate most about this field of work is running into narcissists and liars. I had a recent incident where I got thrown under the bus by the client. Then over those last three weeks, I put up with all types of passive aggressive foolery to top things off. The agency knew about this person from her past performances. If she got an award for acting, she would get an academy award for this nonsense. Also, I'm sick of watching some of these people work the system.

The expectations , entitlement and selfish demands, not only of the LO you are looking after, but flying monkeys .

BIL is coming to visit my FIL in AL near us. It’s expected by my BIL, that we pick him up from the airport and drive him everywhere he wants to go . DH keeps telling him to rent a car . BIL complained to his mother ( ex wife to FIL ) . We visited MIL this past weekend and she gave us grief about it. According to MIL, we are tour guides on request and should be “gracious hosts and show him around “ , since BIL is coming to visit . How dare MIL get involved !!!!!

BIL is not coming to visit us ( never has in the 18 years we have lived here ). BIL is coming to visit his father in AL , and decided while he is here , he would visit some landmarks he wants to see nearby . BIL expects DH to use vacation days to drive him around . He just wants a free chauffeur and tour guide .

DH said No , he already used a bunch of vacation days last year to move FIL near us. No visitors are telling him what to do with his vacation days. DH says he’s not throwing parties or entertaining FIL’s visitors .

It sounds horrible, but I’m constantly thankful that I don’t really even like my mother. And haven’t since I was seven years old. The only reason I interact with her is that she knows I’m the strong and practical one of her kids, and I’ll get things done. When she doesn’t like what I have to say, she just hangs up on me, and that’s fine with me. So I don’t really stress about what happens to her day to day. She refuses outside help out and anxiety meds? Mmk, then she’ll fall in a quivering hysterical heap on the floor when she runs out of laundry detergent, whatever, not my problem. I think my brother is kind of heading that way, realizing that as much as he tries to please her, and do whatever she’s tells him to do (as he’s always done), it’s becoming impossible for him to work, and take care of his own house, and at the same time, be at her beck and call. He’s getting short with her, so she complains to me, and I side with my brother! This is all such a cautionary tale. I hope to never ever put my daughter through this. Not that she would really cater to my needs, I know that, so I have a realistic expectations going into this old age thing.

I always felt like waiting for the other shoe to drop was the worst thing.

The anxiety that went along with caregiving was exhausting.

Lack of sleep may actually tie with experiencing anxiety. Most people can handle a night or two without sleep. When it happens night after night, it becomes too much to deal with.

Horrible family members. Why was I born in this family?????? Anyone wanna trade places?

The stress trying to get my mother on Medicaid and into LTC is destroying my relationship with my sister. She’s angry at me because I brought my husband with me when we met with the lawyer. This is because I am just plain scared and need his support. I’ve done other things which have angered her where she’s felt I overstepped boundaries. I guess I’ve been like a bull in a china closet. I e been trying to find out info so we know what needs to be done.

Ive tried to support my sister because I did not want all this to fall on her because she lives close by. I guess I feel guilty about that.

She is not answering my calls or texts anymore. I cannot keep stroking her fragile ego on top of everything else going on. I am ready to go back home and just not come back here anymore, ever.

My parents managed to destroy the family by failing to plan. There’s nothing left.

I feel hopeless trying to help take care of my elderly father. I feel like this situation will never end and never get better. My dad doesn't cooperate with me and my mom. I have no life now.

Just wish I can manage my anxiety and nervousness better. Just frightened about the future these days. I am not in a good place.

What bothers me the most is knowing I'll never get back these past two years of my life. That my own life - what's left of it - is on the back burner while I do everything my husband can't do for himself. His banking. His shopping. His laundry. His prescriptions. His meals. His paperwork. His cleaning. His appointments and home visits. And now I'm doing all his thinking for him. Making his decisions about whether he wants to wear this shirt or that one, or whether he wants chicken or beef for dinner because every question I ask is answered with, "Whichever." I'm living HIS life and taking care of my own daily tasks in whatever time is left over. But I'm certainly not living. Sometimes I feel like a robot programmed to put him first and forget that I even exist at all. And who will care if the robot fritzes out once he's finished with it?

I envy the first poster whose post appeared in 2014 to create this thread. In all likelihood she is done with her slog.

Sure I get tired of being the one to make all the decisions, do the banking, shuttling my husband to appointments. Our daughter does help out doing cooking laundry and taking him out occasionally. Regardless, it's all fallen on me. I have my days having a pity party. Nothing is going to change the course of Alzheimer's. He spent years taking care of us, our daughter and me. It's our turn. He didn't ask for the state he's in. I didn't ask to be in this situation. He'd take care of me again if I needed it and he was in my shoes, but it didn't happen that way. I shed my tears silently when I go to bed or in the shower. Stop your fussing, you yourself are going to be there one day. Hopefully, your kids don't feel that way about you.

I think for me, it is waiting for the other shoe to drop, waiting for disaster to strike. I am waiting for that time, when I am forced to put her in a nursing home, but will face many obstacles to do that. I am only her POA, not her guardian, so she could refuse to go. I live in fear that some set of circumstances is going to force me to care for her 24 hours a day, when I absolutely do not want to do that. I really can’t. But it’s just the process of navigating it. All, when mother will probably clearly be in the throes of either hospital delirium, or her usual mental illness.