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Loss of freedom and choices, being a prisoner to the needs of this depressed person who either can't or won't do anything for herself, at the mercy of insurance company and their stupid refusal to pay for more aide hours, and shortage of good aides so sometimes no help at all!
SO POWERLESS, and SO IMPRISONED/STUCK!!!😕😢
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Reply to goodenergy
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Hi and I get it...I could be standing within earshot of mom and she has selective hearing...Sometimes she says loudly huh? And if what I was saying was important I'll repeat it..If not, I'll just walk around to another room..But will she go for a hearing test, nope. And don't even mention hearing aids..She has a fit! It's my fault, the way I talk, she says. Well, when dad was alive, I took him for a hearing evaluation and I got one too. He just SAT there and told the audiologist it is the way I talk (being a nurse I realize you have to stand and face the person so they can read your lips and to not shout at the person). So, the audiologist told dad that I speak perfectly normal, but because the little hairs that assist with hearing have, on him, been chopped down. (that's from using a skillsaw many years ago without ear protection).
And mom's hearing, well she hears what she wants to hear. I worry about her driving, too. She said the other day a man stopped her and asked if she "rides the brake" she told him she has to do that...! Now people have road rage and I worry that someday she might have an attitude with the wrong person, but she doesn't care..Her neurologist wanted her to take a driving test but she refused...That was back in 2010!!! She is a very stubborn woman...Now that's what really bugs me..She complains constantly..I get tired of it and make a suggestion and then she gets mad at me for telling her what to do...So now, I tell her I can't tell her what to do it's all up to her..And she tells me You're no help! Can't win for losin'...But last night she was sitting on her bed I happened to walk by her room and she said she couldn't catch her breath so I got the rescue inhaler and gave it to her...I mentioned she needs to go to the ER but nope, she won't go...She has bad bronchitis, and I hear her in the bathroom now coughing it all out or trying to, but she's getting ready to go to work when I told her last night she needs to be seen. she should file for partial disability and cut down or even quit her job because of her bronchitis hanging on...She has trouble with the steroids..I told her last night to go back to the pulmonologist and she yelled 'well how many doctors do I have to see!!!
So I tried to explain why the specialist and she says to call and make the appt.!!! But then she always canceled...So it's a losing battle..She says the doctors just walk in the room and don't tell her anything so she doesn't know what's going on..But yet when I offer to go with her she says no she'd rather go by herself...Argh!!!!!!! So, that's my rant!!! So, with that being said I just throw my hands up and call it a day....Then I go meditate or listen to the commedien John Pinette on you tube...Then there's the music..Sometimes I just have to throw on some earphones and tune her out...She's safe, fed and watered, and doesn't need anything so then it's me time. Hope this helps and Thanks for reading. So thankful for this site.
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Reply to Tumbleweed39
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There are so many things that bother me about caregiving, but you ask what bothers us the MOST. For me, it is the hopelessness of the situation. It will only get worse & could last for years. There is no way out and I feel so trapped as my 2 siblings live far away & never help. All I can do is take it one day at a time.
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Reply to helennnn
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no one ever comes to visit mom and they live nearby.
no one visited dad but stole all his money.
I now have PTSD from caring for them.
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Reply to micalost
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The way my mother doesn't appreciate what I do for her, and the way it is assumed that I (the only daughter and only local one) am expected to do things for her.
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Reply to CTTN55
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Definitely the lack of help. Seven kids and only one would help me take care of mom.
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Reply to katiekat2009
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Wow! I sure wish I would've found this website sooner, but better late than never. Part of me feels like I shouldn't complain after reading so many others stories. My folks are 88 years old, and my mom has dementia. My dad is her primary take care taker, yet he has congestive heart failure. I am one of four kids. I am the only single one, the rest have their families, their jobs, their children, and some have grandchildren. I have kids who are grown and out of the house. God does everything for reason and I know that. When I decided to buy a condo, there was one in the same complex as my folks, and it was a steal! So, with that being said I live about 2 1/2 blocks away from my folks.
My mom was never a pleasant person, she has always been very mean, demanding, and very much a pampered princess!    Now she is in a wheelchair, needs help doing everything, other than feeding yourself and talking! I am the one out of four kids who is they count on. I myself have severe rheumatoid. I try to be there as much as I possibly can for my Dad.  So, now the fact that she's mean, and nothing I do is ever good enough, I'm suppose to just look at her and say, "well she has dementia, she can't help it!"  She is meaner than ever, and my Dad still jumps at her every beckon call? She is the love of his life! ( although I often wonder why)
I do much much more than any of my siblings to do, and I am there much more than they are, I would call myself a secondary caretaker of her, my Dad being primary.  Yet, I feel so stifled, because if I'm not there I feel guilty, and if I am there I can't wait to get home. When I'm there the TV is on full blast, it hurts my ears! And she yells at me and tells me that something is wrong with my ears! She says the same thing over and over again and asks the same questions over and over again. Which yes, I know it's all part of it. 
I try to get my dad to get out of the house when I'm there, maybe go out to lunch with a friend, that way he can really get away from it. I know he needs a break.  If he's there, she's barking orders and complaining!
She incontinent yet, won't wear depends.  I try to keep up with the laundry, changing their sheets,  doing the cleaning around their house, making meals and freezing them, so my Dad can just heat them up.  The entire time her telling me I'm not doing it right,  or to stop that she'll do it later. 
So, back to the original question; what bothers me the most? I think the guilt that I feel for not wanting to be there. The resentment I feel towards her when I am having so much pain and fatigue from my rheumatoid, and would love for someone to take care of me just for a moment.  
Thanks for letting me ramble and vent!
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Reply to Vwagain
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There was never enough of me.I never stopped and never got done and no matter where all we'd already been,Mother was never satisfied and wanted to do more and go more places and she had no idea how much more lifting and loading she created and how hard it was on my body.But even though this bothered me,I'd still give anything to go back and do it all over again.
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Reply to luckylu
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Golden, it's little things that mount up and break down relationships. With my mother if I said I felt one way about something, she would take the other side just to argue. She loves arguing like it's a form of communication. I don't like it at all, so am not going to hang around and do it. I don't do a lot with my mother. We go to church and out to eat a couple of times a week. I spend a little time with her every day, but it is impossible to talk to her. She's either telling me stories for the 500th time or arguing. It drives me crazy. I wish she had some friends she could talk to so the pressure would be off of me to keep her company.
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Reply to JessieBelle
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It's like a baby's crying, cwillie. We can't tune out someone's calling when it sounds like they're in despair. I wish we could turn off our brains sometimes.
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Reply to JessieBelle
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Today I blitzed through several personal care needs for my mother; shampoo and rollers, shave, trimmed her fingernails, lotion for her face and medicated lotion for other problem spots and ending with a sitz bath. All of these things are simple enough to do and I feel a real sense of accomplishment getting them done, she's generally a real sweetie and appreciates what I do. Unfortunately as soon as we were done and I tucked her in for a nap the crazy calling reappeared. I know her brain is effed up, but I can't help overreacting to her vocalizations, the mental dysfunction gets to me every time.
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Reply to cwillie
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jessie - I sympathize, If you try to do something nice they turn it into a battle. A few years ago I was visiting mother and invited her out to lunch at the best hotel in the city and a favourite of hers. We were sitting in the lobby of her ALF waiting for the taxi, and she started in on a controversial topic. I gently stated my opinion and she got mad, tried to argue and glared at me. I quietly answered that we would just have to agree to disagree, and she glared harder, but she did not pursue it. Had she continued I would said that it looked like lunch wasn't going to work, got up and left. To heck with it. As it was, I kept wondering through lunch of she was going to start up again, and I could hardly have left her there as she needed help to get back to her ALF. I think it was the last time we went to lunch as the VaD and paranoia started kicking in. People with personality disorders, are by definition, very hard to get along with. D*mned if you do and d*mned if you don't.
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Reply to golden23
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The disrespect from the person themselves is also hard to handle. This afternoon I sat down to visit with my mother for a while. The telephone rang once. We have nomorobo. It rings once when we get a robocall, then hangs up on them. My mother was across the room, so wouldn't have been able to answer it, anyway.

She said she wanted me to take the service off the phone because she didn't like it and it was costing her too much money. I told her I paid the phone bill and the nomorobo was free. I added that it was me answering the phone since she was never able to get to it.

She just got mad and said that she wanted it off. It was interfering with the calls from friends. I assured her it didn't, but I may as well been barking at the moon. All I could think was that I try to keep her company for a few minutes and she starts a battle. So I got up and left. You can't keep company with a person who acts like they don't like you.
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Reply to JessieBelle
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I think the thing that bothers me most about caregiving is the disrespect from others. Disrespectful family members who know nothing about conditions on the ground but make their opinions known anyway. Disrespectful siblings who believe that because they are siblings that they know by osmosis. Disrespectful health care providers who are eager to be heroes by prolonging someone's life through chemistry without any consideration for the patient's quality of life. Disrespectful outsiders who think caregivers are mooching off their parents when in fact we alter our lives to do what they are unwilling to do.
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Reply to NYDaughterInLaw
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So many answers, such large type, its hard to find whether I answered this or not. Mom is gone now, and its a relief for her, for us but I miss her, who she used to be. What is the worst part? 1) feeling responsible for their happiness 2)feeling like you can't go anywhere or do anything without worrying about whether they will be ok 3) the frustration of dealing with someone who seems deliberately to fight you at every turn 4) repeating yourself in a loud voice constantly 5) watching the slow deterioration and knowing that this is what you will become 6) the sadness of losing your parent many years before you physically lose them 7) the guilt of feeling angry or frustrated even though you know they can't help it 8) knowing there is nothing you can do to make them happier or healthier
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Reply to AmyGrace
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I watched my mother a while this morning. She was more confused than normal and fell asleep with a blood pressure machine in her lap. I thought the hardest thing was watching our parents die for several years. I thought of how it used to be just a few decades ago. People tended to die fairly quickly with things like stroke or heart attacks. It's different now. My parents' last years have been like decomposing slowly in place. It's a helpless feeling and a life-consuming feeling. It feels all wrong, but we're at this point in time where life is longer, but health has not kept up.
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Reply to JessieBelle
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Sadly My Caregiving Journey is over since Mom went Heaven on the longest day of 2016. Rest in peace.
Mother had been diagnosed with alzheimer's, and passed away at 87 years, 2 years---6 months after being diagnosed.
Caregiving is dreadful difficult but We only do it out of pure love and respect, and gratitude for all Mother had done for me throughout my entire Life.
The one thing that used to really p..s me of was the invasion of Family on lookers Who came every Sunday to sit and play with Their new I-phones, chatter among each other while completely ignoring Mother which I thought was terrible disresptful, ( I RE NAMED SUNDAYS INSPECTION DAY ). then I would set the table and pour the tea for all. Mother and I felt a great relief when They had left to return home. Seeing My Family leave with a broad smile of satisfaction stuck to their faces as They felt They had Their duty. God love them. I never expressed to them how I felt, and I was by Moms side 24/7 for the entire time, simply because I adored Mom. We were best Friends, and though I cried my heart out for months when Mother slipped away suddenly but so peacefully without pain, I can feel the greatest peace.
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Reply to anonymous275053
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I'm with freqflyer. Sudden changes and no idea how to do it. After a fall and no ability to get up, my aunt spent 2 days in hospital, then sent home after 1 time getting herself out of bed and to bathroom, and having help with a walker. We luckily had a walker, but no bed rails so she can't get herself up. It takes time to figure it all out, and don't know if it's permanent or she'll improve. It's my first time putting a diaper on an unhappy adult. Home care was promised, and one nurse visit said PT was coming. Too bad they don't have enough help. I've called around and got one of her paid companions who's had some training come Mon. to teach me how to help without hurting my back any more than I already have.
Thanks. Just venting. Aunt Rose is appreciative and thanks me.
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Reply to anonymous272157
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Oh, and "the end" is actually the beginning of a new emotional strain. With no timeline.
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Reply to BlackHole
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No timeline. More specifically, a march to the grave with no timeline. Alongside someone who (for many of us) is no longer relatable. Totally, utterly depleting.
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Reply to BlackHole
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The verbal abuse
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Reply to Morena7
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A lot of forums I have visited archive old threads, you can read but they are closed to new comments.
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Reply to cwillie
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I look for new postings and new questions, but I agree with Jeanne - the threads to the right on the screen are often not new - sometimes 7 years old but we don't know that until we get into it.
It would be nice if there was a section for new threads so the old ones don't keep re-cycling every time someone responds to it.
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Reply to AmyGrace
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I'm tired of siblings doing nothing to help but always have a negative input. Nobody visits or calls. I feel like I have no life and the guilt is overwhelming if I'm not there for her. I'm alone meeting her needs and she doesn't give my life a second thought. I love her dearly and know my time is limited, so I focus on that to get me through. It's exhausting sometimes..
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Reply to Life2sh
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to answer jeannegibbs - When I see an old thread recycled like this I go back and read from where it was picked up again after a long lull. It usually means some new poster related to it and wants to start a discussion about their own situation. Generally I post advising them to start a new thread because most people aren't following threads that are years old, and people who have posted probably won't post again. But lots of times other people will pick it up anyway and it will become a hot topic all over again. Not everyone was here three years ago, after all.
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Reply to CarlaCB
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I'm really very curious. This question was asked 3 years ago. Nearly 200 answers were posted to it. Why are we recycling it again? I'm not criticizing any one, but I've seen a LOT of very old threads start up again. Does anyone know why?

If I answered 3 years ago, and my answer is the same, should I repeat it? Or do people really go back and read hundreds of answers?
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Reply to jeannegibbs
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For me it was the exhaustion and unbelievable stress.

And after a couple of years I noticed I was having more health issues than that of my very aging parents.   This can't be right.   But the stress was affecting my immune system so I was going down hill fast.   I honestly thought my parents would outlive me.
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Reply to freqflyer
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My main objection is that a caregiver can give and give. It can be tiring. Then when you try to not give, people act like you have an attitude. In fact, we can even feel like we have an attitude if we don't do everything on command with a big smile. People don't seem to know or care that our well runs empty. At least it is that way in my family.
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Reply to JessieBelle
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Free time, intelligent conversations and events, sleep and rest and becoming something I was never and never wanted to be - someone who must fight to stop the difficult relationship, the complaining, the helplessness, the memory loss, etc. What I will NOT tolerate from anyone under any circumstances is someone who is difficult, sarcastic, stupid, mean - they are dead in my book once they do that. I will help anyone at any time to the best of my ability - always have - but I will not tolerate disrespect and nastiness from anyone, ever!
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Reply to Riley2166
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When the patient becomes abusive, extremely difficult, etc., then START THINKING ABOUT Y O U. What once was good apparently no longer is. Don't be a fool and stand by and take it. Walk away. It hurts like hell - for the moment - but in the end, you will know you made the right choice. I once had to walk away and it nearly killed me but it saved my life. Don't be a fool - do what is right.
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