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

looloo my mother (now in a nursing home) a narcissist, was always like that - relax, complain, b***h and whine while everyone else did the work. Recently she said "Oh, when the nice weather comes you'll be able to sit on the deck on a lounger". With an old house that needs work, 2 acres and animals? Yeah, right! I have a lounger - in the shed, where it will remain.

I have already posted here before. This was what had happened last night. My husband said, I shouldn’t have lived long to be like this.” and cried. Recently, his aphasia is getting worth, and he cannot say what he wants to say, and his body language is so limited. It was such a sad time. I shouted out in my mind, “why don’t his doctors and physical therapist help him?!” I have been suspected that my husband is having a mini-stroke from time to time, and no one did pay attention and tried to understand his real problems. It’s so unfair. If my husband would have a stroke or some other illness, there are abandoned help available, but once diagnosed as AD, everything is ignored as if those who are suffering from AD do not have any right to be a decent human being. And, that is the most bothering for me.

its not fair. they've lived their life, and i want to live mine! i don't want to be handcuffed to their needs, impossible, confused minds.

Hmmm, well, this answer is subject to change as conditions change, but here is my answer today: The expectations of others. The last time she got any actual physical exercise was probably when she gave birth to me 47 years ago, so PLEASE do not suggest yet another way I should TRY TO GET HER OFF HER BUTT. She never cared what she ate, never cared that she was probably 80+ overweight, with high cholesterol and high b.p., so please don't insist that I be MORE concerned with her med. regimen! She's almost 84 for Pete's sake. She's also always been very narcissistic, and contemptuous of others, so her social circle is now reduced to 1 decent, caring neighbor who checks in on her. Please don't imply that I am not involved enough, that I do not care enough, that I do not spend enough time trying to undo her lifetime of bad behavior and poor choices. Just DON'T.

Ditto on the isolation part....and everything AmyGrace said....and trying to advocate for my MIL with social workers, case managers, nurses, even doctors who don't fully understand her illness (Lewy Body Dementia with Parkinsonism) - VERY frustrating

Trying to remember what was, and isn't any more. The stress of repeating myself at the top of my lungs (because of deafness and lack of comprehension) over and over and over. Living in the negativity loop, hearing the same complaints, comments and questions verbatim five times a day, day after day, month after month, year after year. Having to hold back frustration and anger, and be patient at the same time trying to keep calm and not letting myself get pulled under. Knowing I can't fix this. Wondering how long it can continue when the mind goes little by little and the body is still healthy.

Thinking about what VictoriaP said, I often wish my mom was health-enough that we could do things together. We lived far apart for many years. Now that we're together all the time and could literally do anything we wanted, together, she's not able to really do much of it.

Years ago, I'd told her my fantasy: that I'd drive coast-to-coast and that she's come with me. She kind of took to the idea. We never did it. Now, we never will.

Still, her health isn't the worst, either. I'm not really complaining as much as feeling the hard and swift passage of time breezing by me.

Her LIES! She does absolutely NOTHING all day long. No phone calls,no friends,no sunlight,etc. Just lays on couch or sits in rocker. When I do pop over I get yelled at for not doing anything. What do you want me to do? NOTHING SHE SCREAMS! Ok later I say. Trying to get her to go to alf or get some help because I absolutely cant stand her! She lives alone. I cant stand the sight of her. Ive been helping her the last 10yrs of my life & Im sick & tired of her. Unfortunately for me I live next door to her. Gosh what a big mistake I made. If she would just get up & try to do something for herself instead of waiting for me to show up whenever I do I would be happy. But she wont. Just got her a** laying around all day & night. What a waste. Sorry for venting.

Isolation, I used to have work and friends and family and now I have no one.
Feeling like a failure and when the siblings DO come around I wait on them and feel like I'm the hired help. should I bow and scrape or just kneel and wait for instructions?

I agree! Wonder momma you don't sound self serving.. We all would love a vacation..

Bothers me the most - getting Mom moving and socializing and doing stuff. Helping her rebuild her life (after death of her spouse then stroke) when she does nothing to contribute to the rebuilding. Now that she has moved out of my house and into assisted living, I find it easier to let this go on a day to day basis, since it isn't right in front of me 24/7. But it still bothers me.

The one thing that bothers me about caregiving...I wish my mom was healthy, not on medication and not so frail so she wouldn't need me to be a caregiver. I wish that should would never had lung cancer, COPD, taken meds that made her weak. I wish that she could breath just fine without oxygen. I wish she was like she was 20+ years ago when she could do anything she wanted.

Wondermomma, that doesn't sound self-serving. Everyone deserves their own life. Many caregivers give so much time and effort and ask for so little time. And, in the case of a vacation, it's not even an ongoing respite but just one special occasion, basically -- just one little bit compared to all the caregiving.

So, no, you don't sound self-serving and I had to say this twice just to shove it into your head. :-)

It wil get worse, not better....and I deny help for my own self....hard to handle..

I definately agree with the 'No end in sight' post. The thing that bothers me most is siblings who won't help, but want to critique your caregiving skills, and saying "I told you so" when you vent your frustrations about what mom and dad are doing and how much work it is. And when they say, "you should have left them in the Nursing Home". Also, pretty much no respite care, and knowing I can't go on vacation this year. I'm sorry if that sounded self-serving.

The quote : "A sucker is born everyday" comes to mind! And I'm the "sucker". Since 5 of my 6 siblings don't give a crap to call or visit Mom and I'm here taking care of their Mother too..

Dealing with Mom's memory loss is the hardest thing for me. One big thing is that she doesn't remember agreeing to come live with me nor many other things that we had past talked about. It's not that she dislikes it here, but that she doesn't understand how she got here and, when I explain it, it doesn't make sense to her in any way.

I know what bookluvr is saying. I often feel guilty for thinking of myself so that hardly ever happens. I also get so angry at my siblings for never helping out even though I have asked several times for assistance. Then when I snap at them they say I should not do everything myself - would like to just smack them alongside their heads to see if they have any marbles that rattle around there. I love my parents and only want the best for them but sometimes I get so frustrated.

I love my Dad with all my heart. He broke his hip in January and has been here since leaving the nursing home after 1 week. He is blind and has bouts of confusion which are getting worse. My Mom is still in her home about a mile away. Physically she is okay but her dementia is far worse than my Dad's. I am the oldest of 5 kids, one is out of state and one is an alcoholic who can't take care of herself, much less my parents. So between my brother, sister and I, we take care of the two. My Mom swears that I have taken him away from her. She leaves nasty messages on my phone accusing me of spending his money and other things I wouldn't post. I left my RN job to take care of them. I am thankful to have the help of my husband and my sister. I also hired a friend to come in 2 days per week to give me a 2 hour break to do as I please. Sadly I will probably use that time to clean up the house and yard. I guess the thing that bothers me the most is the loss of freedom. I also get tired of the full urinals and not making it to the commode in time. Yesterday he slept for 22 hours and woke up at 8 PM. So now, in the middle of the night I am up, trying to keep him calm. I cannot trust him not to try and get up and fall again. I thought he was dying today and it really scared me. Thanks for a place to vent.

Feeling like there is no honorable way out.

Feeling under appreciated. A thank you or a pat on the back once in a while, would go a long way.

I changed my mind. The worst thing is to watch your parents decompose physically and mentally. It is a desperate feel at first and we try to stop it from happening. One day we realize that it is going to happen. We can't stop it. We can only make it more comfortable.

Only one thing? I guess it would be boredom. (Gosh, this was a boring answer.)

I missed my freedom. I was angered by my brother in laws who never came to see their mother (well, one came once to borrow money and the other showed up drunk and tried to fight with my husband), but who ravaged her condo for any thing of value when she came to live with us and then accused us of spending to much money for her care (around $3000/mo mostly on caregivers who gave me a break twice a week so I could run errands). My job, however, is over now. My MIL passed away 10 days ago, but the last days of her care, watching her "actively die" were traumatizing for me. Now I miss her. I am glad to have my freedom back, but am still angry at the brother in laws for their heartless treatment of a good,kind woman.

"What bother's me the most with caregiving"?

No longer knowing my mom (or her knowing me)

Watching her end of life happening... so not pleasant

Witnessing things I could never have imagined prior to this.

Lack of Life.

Missing my son

Missing my job

Missing ME!

Guess one day that will come back to me, and then, I will miss my mom?

Crud

Vicious circle.

I'm afraid I haven't found what's going to be the worst yet. I think the lyrics are from the Janis Joplin song "Me and Bobby McGee".

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

My answer: It's like applying for a job where one has zero professional training, yet you are hired with no pay and no set hours.

I want to add to this discussion. I need to, I am so depressed today! I hate my mother's company now and I used to love her company. She was always crazy, obsessive and self centered, but now she is all that with not a second of love, openness, awareness of me. She treats me like crap and expects me to at her beck and call no matter what. She is not mentally deranged with Alz or even dementia: but old age is like a caved in room for her, which is terrifying and is all she can see. I can't save her, talk to her, or add a thing to her existence. My life feels like it has no purpose and she is only an obstacle to it going anywhere. This effect of being with her is so negative on me: I NEVER was like this in my life before she came here.

It's a thankless job in which everyone thinks it's your job and don't need their help even though I asked for help. Being treated as a drudge and not someone who is trying to help him. Watching my life go by. Dreams dying because I'm no longer adventurous but filled with fear. I think the verbal and physical abuse have made me so fearful of facing people. Yesterday, I parked my car and was so scared of going into the salon to ASK if I can have a haircut. I had to pep talk myself to do it. For a haircut! It's so insidious the effects of verbal abuse and to constantly watch the feet and hands in case he decides to hurt me. It's only 2 days of my weekend shifts and I can't wait to go back to work.

I agree with Jeanne.. If I could fix Mom with that magic pill, I could have my old Mom back..She may move slower but I could handle that...