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

The worst is the critical and oblivious uninvolved siblings. I took care of both my parents . My siblings waited until near the ends of my parents’ lives to “get involved”. My sister was angry that I started a phone chain to give information the last few weeks of Dads life . That wasn’t good enough , she wanted a personal phone call from me each night and said she was entitled to that. I was working , Dad was in hospice , Mom at home with Dementia . I was also raising a teenager . After Dad died , had to put my narcissist Mom in assisted living a year later as she could no longer be left alone and was very uncooperative and hit me . Sister-in -law criticized me for putting mother in a home . Meanwhile same sister-in-law who was retired took her own cooperative mother to assisted living . Now hubby and I dealing with his father’s dementia . He is in assisted living , demands to be taken out to dinner weekly , asks to be taken on a cruise , yet the guy won’t shower or change his depends . Now have step sibling on that side complaining that her inheritance money is being spent on assisted living . Most of the money was Father in laws. His second wife was broke when he married her at 60 years old . And all the children were adults and out of her house . Hubby’s mother ( divorced hubby’s father ), lives in another state and will be difficult as well , she will be needing assisted living soon. She says she won’t go to one of those places . Hubby also has an Uncle with no children who we will be left to deal with . Hubby’s brother no help , but he wants to visit family and expects us to pick him up and play host . He isn’t getting why we tell him to rent a car from the airport and visit these elderly relatives on his own . We don’t have time to host a reunion .

What do you expect? For each of us it's all about us, but we learn that is not so and modify our attitude. Now she has reverted to that earlier state. She will be that way forever.

The crushing feeling of responsibility 24/7. Feeling alone is a very close second. My dad has Alzheimer’s. I have 4 siblings, but they all live out of town - the closest is 4 hours away. My husband is also ill (with IPF) and we have an 18 year old just finishing high school. Even in the rare quiet moments, I just can’t relax.

There is no off switch…

The worry. When you care, it's very hard to completely stop worrying, for example enjoy your vacation and just not worry. My mom has caregivers.

Feeling like this is a never ending situation. I could be at this for years and I find it depressing to think about. I’m so tired of it.

Not being appreciated, and having to do this all by myself. This isn't my first go-around either, I did this first with my grandmother, then my grandfather, then my mother but I did have help with my mother my father helped with her but now it's just me caring for my father. And he doesn't even like me. He doesn't even try to hide the fact. When he speaks to me it's a growl unless hospice is there than he will use words.

The one thing. My life has been put on hold. I have many things I want to do and I am confined to my home to take care of my wife. I’m only 63 and have so many things I want to do.

I'm still in the "early" stages of caregiving, since my mom lives 10 min away and lives alone. I've talked to her about moving to a senior community or a smaller place, but she is resistant and doesn't want to have to "downsize". She is turning 81, she is still driving so I am not constantly needed. I do a lot for her, I am her POA and I keep an eye on her finances, etc. I guess the hard part for me is she is demanding and at times very unreasonable. At this point, I try not to "future trip" and worry about the future.

I never know if my mother will wake up in the morning or not. I’m terrified that she might die here or suffer a serious fall when I take that one minute and go to the bathroom myself. Death and dying is not a natural experience for me I watched several of my relatives die and I can’t get it out of my mind. I would never be able to sleep in that room again, or anyone else. I would have to move. I’m exhausted. She gets up in the morning, I feed her breakfast and she goes right back to bed until about 11 o’clock and then wakes up chipper and happy and continues to get more and more unhappy as the day progresses. she’s bored and lonely I get it but I can’t entertain her 24/7. She’ll be 94 and has moderate to severe dementia. Trying to explain anything to her is impossible as she doesn’t get anything anymore. That’s why having a conversation with her is nearly impossible. What kind of life is this? I am ready to place her in a memory care center but my siblings have not yet reached the same decision as me. Every day is drudgery!

What really bothers me is the shocking amount of apathy towards the family caregiver from medical professionals. I’ve been told countless times by Doctors, Surgeons, Nurses, etc that if I want the best outcomes I need to do the work necessary to keep my parent out of a SNF. I’ve been told “It’s shameful when family won’t step up to care for their own” or “What kind of daughter would you be if you didn’t do what’s right” by too many Doctors. If something goes wrong, it’s *my* fault - the untrained, unpaid, with no alternatives. When I request guidance I’m told to watch YouTube. I hate being simultaneously cornered & dismissed by this community of so-called professionals.

Cleaning shit! I will NEVER get used to it!

You are not alone! I care for my disabled son and his dad who I divorced 30yrs ago.
They both lost the ability to have any compassion for me. I do EVERYTHING for them! And I have never felt so unloved and cared for in my entire life.
Would I do anything different? Not really.
But I have started setting boundaries.
Like saying no untill I finish MY dinner. Or not doing what they want me to do while I'm trying to take care of myself.
Its hard! The hardest thing I've ever done. But I must put myself first! Wether they know it or not. It's when I'm doing something for myself they need me. But not anymore! I've started eating before then and changed the schedule around to accommodate me. And they don't like it. But they'll get used to it.
Im single and it's lonely. I must love and care for myself!

sooo much of it but here's the latest (in truth I just need to vent) I spent so much time hiring and talking to & texting with -- a caregiver who is willing to do wellness checks (no need for long shifts!) and my mom, who can barely use the remove control for the TV, can't reach her dryer (stacked) has a hard time understanding her cell phone, plus a myriad of other frustrations, like, she can't lift the carafe to pour her coffee -- is mystified by her presence and complains to me about her.
So we shall fire her! I say to my mom, grandly, through gritted teeth.
Stifle the rage.

Having to let my brother and sister in my house. My mom has a physical disability but her mind is all there. She could EASILY go to their house with her wheelchair. But instead my house is supposed to be a freaking hotel for them (if my mom were dead, I'd never speak to them again). They have done NOTHING to help in three years but have caused plenty of problems. I made a boundary with my stealing, nosy sister that she's only to come here to visit when I'm home. (And, she can visit with my mom in private for as long as she wants then, but I can make sure she is not opening drawers, doors and stealing things). (And I'm home all day on Thursdays, Fridays, the weekends and every evening). So there's only three day times during the week she can't come (and she works full-time but wants to come on her lunch hour those just to piss me off and to see what's new around here because she's nosy and steals things. Not only possessions, but ideas.) I can't stand it. It's one thing to have to let her in the house, it's another for HER to make the rules in MY house. And by the way, she lives 5 minutes away--she could take my mom for a day, a weekend or a month. But it's just easier for her to do something to push my buttons instead. And, I mean, why would she actually want to commit TIME to my mother? I WANT THIS TO END. I am told that I have now developed cardiovascular disease and fat around my heart from the stress and anger caused by dealing with this crap. I was perfectly healthy three years ago. I love my mother and I realize her kids have the right to see her, too, but on MY Schedule--which is very generous--it's MY house and I really the thing I resent the most is having to deal with these uncaring, troublemaking, horrible people I'd otherwise kick the h** out of my life. I've done all of this for my mom because I love her (more than myself, obviously, because it's ruined my life, my finances and retirement). Oh, yeah, and my siblings who said they'd help three years ago? Haven't done a dang thing. Go around my back to make plans with my mom that aren't possible (as in, we already have a dr. appointment, I'm not here, etc.) They refuse to cooperate, contribute, but have no problem making threats, being abusive and lying. Since the beginning, I've been abused, they refuse to give me or offer me a break, cover for a vacation, cooperate at all. They RESENT I'm doing this, yet they won't do it themselves. Jerks, each of them. I look forward to the day they're out of my life.

Being told that I would only have to take care of my mom for 2 weeks which has become almost 3 months with no end in sight. I’ve been told I can’t go home until her appetite comes back which has been diminished for the past few months all the while my brother got to go out for his birthday plus got to go on a Caribbean Cruise over Christmas/new years. My husband is on dialysis and comes first. He has to come to my moms to see me.

Being told that I would only have to take care of my mom for 2 weeks which has become almost 3 months with no end in sight. I’ve been told by my mom that I can’t go home until her appetite comes back which has been diminished for the past few months all the while my brother got to go out for his birthday plus got to go on a Caribbean Cruise over Christmas/new years. My husband is on dialysis and comes first. He has to come to my moms to see me.

Whew, where do I start? I have read many of your replies and I can identify with most of you. Mom was diagnosed with dementia about 12 years ago. For the past 8 years, she has lived with me. They are so many hard things about being her caregiver. Recently she became incontinent. Just when I thought it could not get any worse. I suffer from depression and anxiety since she came to live with me. She refuses to do anything for herself. I have a master's degree and I cannot even use it, which comes with a healthy price tag of student loans. The doctor said she should not be alone. So I cannot work or play. She and my husband cannot stand each other, so I get little help or empathy from him. He thinks she is faking it. Really!!! He never knew my mom when she was one of the most fun-loving people you could ever meet. Therefore he does not understand. Which makes my life even harder. She also drives my 12-year-old crazy. When he is not in school she calls his name constantly to fix her tv. Which she pushes all kinds of buttons which causes it to change from HDMI to some other input. Since we have a Roku for her I just tell her to push the talk button to watch whatever she wants. However, that just falls on death's ear. Also, she is very vain. She thinks she is still a young woman, but can't seem to even try to make it to the bathroom at all. She pretends to take a shower while just running the water and sitting on the toilet. I often come into the bathroom just to find her wasting water. I ask her what is she doing and she tells me she is using the bathroom. My reply "how can you use the bathroom with the toilet seat down?" I then make her get in the shower. I have tried to wash her up since she doesn't wash up properly. Her reply is "I don't want you washing me up, I am not into that freaky deaky sh*t". Which really gets under my skin, the last thing I want to do is give her a bath! But it must be done every day bc she reaks of urine. Did I mention I have severe back problems? Well, I do, everything makes my back hurt. But I have to do it for my mom bc it won't get done. I tried everything on the market to keep the house from smelling like urine. Nothing works. When I remind her to go to the bathroom to keep her diaper dry, she claims she just went. I bought her a diaper pail like many people have for their babies. Sometimes she uses it and other times she just leaves her diaper in the middle of the bathroom floor soaked with urine. The dog sometimes gets a hold of it before I notice it and begins to tear it to shreds. Now I have to clean up a whole mess with a horrendous smell off the floor. In turn, my back is killing me. I have gotten to the point that when I hear her coming out of the room I just cringe. I feel guilty about not wanting to be around her but I just cannot help it. Just when you thought my story was over, it's not even close. But I will only share a little more since this post is long. The final thing I want to mention is her appetite. She will eat up any and everything in the house. Including other people's leftovers from a carry-out, your soft drink, and foods I buy especially for my son, husband, and myself. Did I mention she does not like to wash her hands? Yuck! We have resorted to hiding non-perishable things in our bedroom and got an extra refrigerator for the garage with a lock on it. However, sometimes my hubby or son forgets to lock the frig, and poof your food is gone. It is like she is watching them like a hawk to slip up. I miss having a life, going on vacations, and having family fun days with my son and hubby. I feel like my life is just wasting away. I worked so hard to get my education and cannot even use it. To make things worse, since I cannot work we have to use her income to supplement living expenses. She makes too much money to qualify for Medicaid but too little to pay for care herself. I am stuck between a rock and a hard place. Sorry for the long vent. May God bless all of us.

Just one more - I promise!
Vacations or time off. No matter how much extensively you plan for every possible contingency, you can NEVER have a vacation or time off where you can be completely carefree and enjoy your time off. If you are even lucky enough to get a vacation, you will spend hours lining up care, double and triple checking those arrangements, hoping no one person or thing fails to do its job, and answering and making phone calls when they do. Meanwhile, no one helps you and everyone around you vacations their a#% off!

Thought of another one. People who blithely tell you “you made a choice” - “just put them in assisted living” - while having no knowledge of the complexities, care issues, legal issues, emotional issues and costs.

Feeling anxious and trapped between my love for my 90 plus parents and my love for my spouse and the fear of time lost. In spite of my extensive efforts to problem solve and make the best of a difficult situation, those efforts rarely if ever bring understanding, appreciation or any kind or release from the pressures of making the best decisions I can with the resources and time available.

I GET WHAT YOU FEEL.....BUT BELIEVE ME....SHE'S SUFFERING MUCH MORE THAN YOU. I TAKE CARE OF MY SISTER AND THANK GOD WE DON'T HAVE WHAT THEY HAVE. HELP HER LOVINGLY AND YOU WILL FEEL BETTER INSIDE.

ALSO....IT SOUNDS LIKE YOU WOULD DO WELL JOINING A CAREGIVER GROUP TO LET OUT YOUR FRUSTRATIONS AND HAVE SUPPORT FROM PEOPLE THAT ARE GOING THRU WHAT YOU'RE GOING THRU. I KNOW IT IS NOT EASY AT ALL...BEEN THERE, DONE THAT. I HOPE MY ADVICE HELPS YOU.

Everything. I wish I knew a Mr. Miyagi. Some days I feel like I'm gonna go insane.

That other people just don't "get it."

We are in the midst of bucket-listing since dh knows his days are numbered. We saw his brother and nieces and nephews in MD (two hours away) at Thanksgiving. On Tuesday, we made a spur-of-the-minute decision to visit his family in WV (three hours away). It went from "I wonder if I'll ever see my cousins again" to reservations made thirty minutes later and on the road an hour after that. It has been a very emotional trip for him. He has wanted to see all the places that meant something to him when he was a kid when his family spent two weeks here every summer. Of course, now we are just driving and looking, not hiking and walking, except he insisted he wanted to see the falls -- 214 steps down to get to the falls, and of course that many back up. He almost didn't make it. We've seen his cousins (and I am slapping myself for not taking pictures). And my father (92) called last night after 10:00 p.m., after we were in bed. He says, "I know it's late, but what-the-h***, you're on vacation." This is no vacation. I haven't had a vacation since 2015, almost every packed suitcase has meant a trip to see him (in Delaware, five hours away) and mom when she was alive. He just doesn't get it.

I think one of the worst things is the exhaustion. I am the caregiver for my 94 year old, bedridden mother. I cook separate meals for her as she is very picky and has numerous food issues. I change her, change bedding, do several loads of her laundry per week. Several times a day I reposition her, with her telling me that what I am doing is not right, not comfortable, etc. I dispense medicine, deal with the hospice nurses. I get up at night to deal with her pain, reflux, or inability to sleep. She has started episodes of crying and saying she is lonely and wants me in the room more to talk to her. I handle financial issues, pay her bills, update all the relatives on her condition. There are times when I am so physically and mentally exhausted that I can barely think.

The exhaustion, the endless worry, the constant guilt, the resentment and frustration. Anger that I feel like my life is passing by while I take care of everyone else. Too exhausted from being a caregiver and holding down a full time job to have any kind of social life. Feel like I'm no fun at all anymore. Even my dogs seems depressed. Feeling like you aren't doing enough or doing right by anyone. And not knowing how to end the cycle or what to do to fix it. Can't have an aide in the house 8 hours a day as my dogs don't like strangers, don't want to lock the dogs up all day, can't have someone live here, no more rooms. And I don't want to admit defeat and put him in assisted living. And now the tears come. I guess there isn't one thing that bothers me the most. It's everything.

Dealing with all the demands of the medical system—a lot of what goes on seems lacking in common sense and/or clearly insane to me—very difficult to trust a system that’s run for profit—

All the boomer stories. The repeated past stories that my mom remembers in 10 different ways. "I had a great childhood " one month, and the next is " my childhood was awful!" No connection or warmth from my mom just the endless stories.

That is funny! I see the same thing! My mom is all "About Her" too.
Shows little feeling for her children and is only happy when she gets attention or eating over her children's house for the holidays.

I think I could probably deal with my MIL if she had Alzheimer's... maybe. Mine thinks that the sun rises and sets around her. She does absolutely nothing all day but expect my husband or myself to do something as simple as make a phone call to request an order catalog after we have been working all day.
She is the most annoying person I have ever met. She lives next door to us and can tell you more about our comings and goings better than we can.
She is my husband's mother but I have never felt like she fit in with our family.
Its to the point I don't want anything to do with her.