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

My wife has Alzheimer's..............I feel so sorry for her and do all I can to keep her entertained and involved. When I think to get in-home or consider other options so I can have a life, guilt sets in. My kids (not hers)& grandkids live out of state and my brothers who live in state all pressure me to do something and spend more time with them. I would love to, but she really has no options other than me. I get upset at times wishing I could enjoy the outdoors and hobbies again, but get over it. The pressure from family is the worst,

What surprised me the most about caring for my mom with Alzheimer's, was the unpredictable nature of the whole situation. Her lucidity and her attitude could change on a dime, so one minute she was kind, easy-going, etc., and the next, she's verbally abusive and accusatory, as in, "Who stole my cup of tea?" (She forgot that she had just finished it.) We couldn't really make any definitive plans, let's say for all of us to go out for dinner, because it would depend on her mood, so she could be nice at 3:00, and "fussy" at 6:00, (like a toddler). I found writing about my stress to be therapeutic, and I wrote down anecdotes (many of them funny, actually), that became a book: "My Mother Has Alzheimer's and My Dog Has Tapeworms: A Caregiver's Tale." I thought of the title when I was driving home from work one day, and I realized that my once broad life, was reduced to the pressing health concerns of my mom and dog. I learned to develop the mindset that when my mom would insult me (over nothing, by the way), that it was the disease talking and not her. I think all caregivers deserve a pat on the back.

I'm feel like I'm giving up my life (I'm a 56 male and single) caring for my mom . Days are consumed with caring for mom. :(

What bothers me the most about caregiving is that I'm not being appreciated and they take a lot of advantage of me being there. I suggest you look for another job where you would be appreciated, you're a human being too. I'm so sorry for what you're going through.

Wow! I'm sorry for you for sure.
My mom has demensia and 4th stage lung cancer. I have lived with her for over 10 years. It's getting harder as she moans all day/night, won't eat or take her meds but when older brother gets here she's absolutely fine and only 1 extra strength tylenol all day instead of liquid morphine?!!! So? Why is that?
Everyone says she's playing me. I'm exausted. My voice sounds angry, irritated, frustrated and then he tells me off. I just spent 3 weeks full time with her while he vacationed in Florida. It was hell. He comes back and voila she's fine. Thank you listening to me rant. I love my mom with all my heart but I have no life. I do have 2 grandchildren and a new bf. I'm trying so hard. It's always about her...always has been. We used to be friends and now it's like I'm just the one who gets to clean up after everyone like usual while brother dearest gets to see the smiles. Jealous? Maybe but I don't like that emotion and never have been but what does anyone think? Am I a terrible daughter?

For me, I wd say having to do it full stop. I feel I have had to put my life on hold to care for my mother. My sis and bro did a runner years ago and bcoz I don't want to leave the burden of it to my other sis, we share the burden. Our mother is unmarried, has no friends, won't joi any groups etc and is miserable 24/7. Joy oh joy!!

0h yes. I can relate. I'm called a b constantly when all I do is help with everything. I want my life back.

The thing that bothers me most is that I never had any choice about being a cg. I feel a deep sense of moral obligation to care for mom. I woke up one day laid off, with a mother getting too old and frail to care for herself. I was the default child because my mom and I were close. We've always been closer than she has been to my sibs, and even though they love her (or say they do), they do nothing financially or to help with anything at all. I have asked for help from them repeatedly. My mom and I always had fun together and talked. In some ways getting her story and her family stories firsthand is the single greatest thing about caregiving. I love and respect her for being such a good person. She didn't smoke, drink, and she and my dad were married 40 years when he died. Is it corny to write that she set such a good example as a mother and wife? She's fun and loves to ride around with me while I run errands. This IS a labor of love and I know others feel that way. I wanted her to be able to die at home, but I didn't count on 10 years of this and did not fully understand what I was taking on with dementia, heart and kidney issues, mac degen, etc.... Then, there's having to live in her home. I cannot move a tchotchke as it makes the dementia worse. I have devoted myself to this to my own neglect. It's caring for her and the house that consume everything I have. It would have been so much easier to do this as a family, but that was never possible in our family. What makes up for their lack of familial care and love? I am getting everything. Even the tchotchkes. Unfortunately, there may not be much left and even that is OK. I have realized life is about relationships, not possessions, and how you conduct yourself is something to be proud of in life. I hope that God forgives me for yelling at Him when I'm just too tired to do anything.

The obliviousness of siblings and other family members about the extreme effort, energy, financial burden and health effects of being the sole caregiver for my parents.

Ill confess also...my mom has demensia and 4th stage lung cancer. She moans so loud it breaks the sound barrier. She fell last week and was acting so nuts I called ambulance. As soon as she gets to hospital she can talk. Walk. Eat. Drink and make sense to Dr and nurses. They actually transported her home because I couldn't get her that day. She returned at 5pm. Moaning. Refusing to eat. Can't walk...already fell. I feel trapped. Like I'm a prisoner here with a guard that only moans at me. I make food...she says she's hungry and I bring it and she won't eat. I cannot afford to throw out all the food she rejects. It's driving me nuts. Some of you say...suck it up. How? Ever tried it? To never be able to sleep myself and with all the influcted aggravation...it makes me worse. I've been doing this for 11 years! And I have a narcissistic brother who left for Florida for a month and he gets me served with lies about me smoking in the house and that I won't even give her a tylenol! How would he know??? This has been in court for 16 months because hi illegally changed her poa to only him but does nothing because all he wants is her money. It's exhausting. Any advice without someone ripping me to shreds?

My mother and I always argued about everything. If it was red, she will say it was green. If it took 30 minutes, she will say it was 5 or less. If he was here yesterday, she will say it's been weeks. But also she never believed anything I said from early childhood on. When I said that I thought one of her sisters had some kind of dementia, she said I was crazy. Two years later when other relatives said it, of course she believed them. Do you know what it's like to NEVER be believed?

Begging your family to help and they won't even when you are exhausted from years of doing it all by yourself.

I hate the term "caregiver". I don't care. She's awful and dealing with her makes me miserable. I want a LIFE. I need to EARN MONEY. There is nothing good about this. Not one single nice moment. The only thing I've learned is that I have a sense of duty, which may not be healthy. I've also learned I'm not capable of murder.

If you drink, you deserve to have your kids abandon you when you're old and infirm. Those drinks are actively contributing to your future dementia.

If you don't save up AT LEAST $250,000 (that's in addition to your social security checks) for assisted living, then you'll get put in a Medicaid bed next to some other coughing patient for God knows how many years. Don't expect to move in with a relative. That's cruel.

I'm wasting my time typing this. The people who need to read this aren't reading this.

I love my parents but I struggle with anxiety and resentment, followed by guilt for feeling resentment. Now days, I jump out of my skin every time the phone rings. Dad loves to reminisce about the great times he had with Mom after retiring --- travel (Italy and US), socializing (ballroom dancing, bowling leagues and all of the things they did with friends). MY retirement, on the other hand, is NONE of those things. The best years of MY retirement are being spent taking care of THEM in the house they built, which they won't leave but can't take care of anymore. Dad is a sharp 95, but Mom is 91, has dementia and can't care for herself or be left alone. Because it wasn't part of their plan, ever, to move into a senior living/retirement community where they could age in place (reasonable affordability not an issue), they have left ALL of the hard decisions and heavy lifting to us. They did not take care of their own parents so they don't even grasp the consequences of their choices. Note to self: I will NOT do this to MY children. 😩

I am caring for an aunt who has no kids. I have been a caregiver for my mom and dad and they both have passed on. My issue is caring for them they were so appreciative but with my aunt, she feels like someone owe her something. She gets flip at the mouth and it's like she doesn't want to adapt to my way of living since she was a hoarder. I have ocd and it really get hard bumping heads. She need to realize that I'm helping her and right now I'm trying to find her a nice place but her income won't allow it since she didn't work a lot in her younger days. She's 85 now, and have step siblings who she does not affiliate herself with them now. I have had her evaluated and waiting on the results but I see some signs of dementia happening with her.

Warching the decline at high speed and slow motion. DEMENTIA is a horrible disease.

Watching my father's decline which has increased in the last two months. He is a shell of the father I once knew. I'm his sole provider and I think I'm depressed, have trouble sleeping, and just don't care about things anymore.

So I'm not full time caregiver just yet, but being the only daughter between two brothers I can already see I will have steep path in front of me. I know I'm not promised tomorrow but if it's going in the natural order... 😔. I think what bothers me the most is that I have sacrificed the most and will continue to, and be treated the worst. Jeez when I write it down I sound like a spoiled jealous sibling. OH but there is so much more between these lines. I have always promised to take care of her and I will until I don't have the ability to do it safely. But I almost dread it and just that makes me feel like crap. Yup I'm certain I need therapy. I don't know if I answered your question but this forum has alot of experience and wise advice.

You’re not alone! My mother does the same thing. She has “per” doctor near psychotic episodes, his save all do all is take her to Er!!! They in turn send the sweet little old lady home! She poops on herself and gets it everywhere and it sets her off! I pooped in her pants, smeared it all over the wall scrubbed it with my tooth brush!! Not her she didn’t do it I did! And she wants to parade around nude in-front of my husband who she believes is her husband!!

Siblings not agreeing with me on her decline and alienating me to handle my make believe world.

What a good post!!! Look at all the replies!! You got your vent out and helped everyone else too!! Thank you so much! Mine isn't about being abused by mom but from the family!! I was tired of having to do everything myself and get nothing but accusations and criticism from them. I call them "armchair dictators"! They got to come and go, have a life,get her love and I made sure she got everything she wanted/ needed including her ice-cream not cookies, lol. I know what you mean about being treated like a nothing. Mom passed away last October and I'm almost done with all the financial stuff and then I'll disown some of them. I've had enough of being an only child when I wasn't one.

I hate the lingering and slow motion decline of my 95 year old parents and the wishing and waiting for this endless slogfest to finally be over.

Ditto, except its my 94 yr old Mom. I don't want to live this long if you have to take insulin and handful of pills every day. And I don't have any kids to take care of me. Just kidding, I would never do this to my worst enemy. Care giving sucks

Loss of personal time and personal time with spouse,

Not knowing when it's going to end, and knowing it's going to end

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.