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That is a truly depressing story and the thought that this could go on a decade let alone 12 years hell five is beyond my comprehension. Anyone who says "They took care of us we should be happy to take care of them..." Is either a moron, a martyr or has no f-ing clue how complicated and draining and consuming care-giving can be! And should shut the hell up!

My God Pirate I hope you can get some relief. Mine may be coming as he is scheduled for adult day care for Tuesday this week AND my mom has started making a list of nursing home i believe, like we are "almost there" and she needs to acknowledge it and be prepared for this eventuality. I am sure now even her good intentions/guilt is wearing thin.... I know she didn't see this being four years....I know it.
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Hi... Does your loved one need to be "terminal" to recieve Hospice Care? I guess we're all 'terminal', but at this point the drs/surgeons are giving us some hope... I'm at a loss. I'm SO tired and am feeling SO depressed. I need strength. I'm praying all of the time! My mom had to go to the ER 2 nights ago b/c her left leg was totally blue! She has bad peripheral artery disease (PAD), and had 2 stents put into the right leg last week, which did work. The left leg stent didn't work. She's in horrible pain 24/7 and the ER physician had her prepped for emergency surgery to that left leg, but when they contacted the surgeon who worked on her right leg, he halted everything and told the ER drs. that "they were not allowed to go ahead with my mom's surgery to her left leg." He said that she must wait until her scheduled appt. for surgery with him on Oct. 19th! That's over 2 weeks away and she's in so much pain and her leg looks awful! She can hardly walk. The ER discharged her to home at 115am! I don't know why they couldn't keep her overnight at least and keep an eye on her left leg that has very little circulation! When I was in nursing (before I had to go on disabilty), I worked in that same ER, and we never discharged people in the middle of the night! Especially when they were in a huge amount of pain, etc... I was angry about how my mom was treated (or not treated), but now I'm just so tired and very, very depressed. I'm cried out...almost and just want to sleep. It seems that there are no breaks for the caregiver! Sorry for sounding so negative. I'm really not a negative person. I'm just so down. I thank God that I can come here where I know that all of you understand. We all need a break!
Thank you all for being here and for understanding. You're all Angel's in my mind!
God Bless you all, Kathy
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PirateGal... GOD BLESS YOU!!! You've literally been through HELL!!! Right now I'm not sure who's more deserving of an Olympic Medal for being able to keep their sanity!!!! You and/or MaggieSue!!! Why is it that some people get to just fly through life, take vacations, have nice get-togthers with "normal" family, have time to actually read an entire book, go for a massage, take a class, have "me" time, etc... and then there are those of us who have the living S**t sucked right out of us from those that are s/p to have loved us... Everyone here deserves...Something!!! Something Very Good!!! I'm starting to think that maybe getting confused myself in older years (or maybe sooner) may be a good thing! The thing is, I have NO ONE at all who's going to give a crap about the caretaking of my A**!

Sorry for the emotional outburst. I'm so proud of all of you for all that you have to endure at the hands of your own "loving" parents (or whoever it is that you're caring for). It just Ain't right! lol... Seriously though, my heart goes out to all of you!!! I'm so thankful for this group. I'd be lost w/out you! I wish there was some way you could all catch a break!!! Really I do! If you do find a way, take me with you please...

Kathy
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STOP.. LOOK IN THE MIRROR AND SAY: " I AM DOING THE BEST i CAN."
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Pirategal,

I love your story about your mom's breakdown. I wish my mother would cross the line with her acting out and we could have the paramedics lock her up. She's almost but not quite as out of control as your mother. It's funny that all this controlling makes them out of control.

I'd love to get a diagnosis and some pills for her.

She's staying with me now while they put her house back together after a fire (lightening). She tends to prowl all night and I've learned to sleep thru a lot of it. The other night I heard a loud girgling from the room where she sleeps. I thought it might be a death rattle. No such luck. She was sitting in the dark finishing up a bottle of Ensure with a straw and giving it a good last slurp.

I've told her she and her cat have worn out there welcome here and it's time for them to go home. She just ignores me. Doesn't want to hear it. Soon I will have to pry her fingernails from the wall and toss her in the car with her cat and cat litter and dump her off at her house. Maybe that will trigger a major acting out.

This s**t just goes on and on.
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I think you do need to be terminal that is not doing things to extend your life to be on Hospice, it is rather time related and you are not "expected" to live past 6 months in general and are not taking medicine or doing Chemo to extend your life. That is what I recall from my Grandmother going on it. They will manage pain but not attempt healing or prolonging of life.
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Willow, it sounds as though your parents have turned you into their slave....bought and paid for! Even though you are paying rent, they have a distorted notion that you are lucky to have a roof over your head, and the help you give them is payment for what you get back. Of course this is absurd, but obviously they aren't thinking clearly. (Maybe they don't have dementia, but they are delusional.) Their refusal to get and pay for additional help, even though they can afford it, is bull. They think they have you over a barrel. They think you have nowhere to go, no one else to turn to, and because you love them you will continue to be their slave. You're in a sticky situation, because part of what they think is true. You do love your Mom, and want to help, and you don't have the money for another living situation at this time....is that correct? You've said you left before, but always end up coming back. Is it out of duty and love for them? Or necessity for yourself and your financial situation? Or maybe both. The fact that they're both "sound of mind" makes it tough for you to get any control at all. If I were you, I'd make an escape. You'll be no good to anyone if you continue under these unbearable circumstances. If the town where you're living has any kind of shelter or living quarters that you could go to temporarily, to get out from under their control, you could get some peace and respite, and begin to repair your own health. You could go over to your parents' home once a day or so, check in, tell them you'd be happy to assist them again if they agree to hiring additional help, but that you will be dead if you continue to do it alone. Tell them you love them, but you don't want to die proving it. Once they're all alone without their slave to order around and attend to them at their demand, they might start to see things differently. I'd get their POA as well. If you're going to be their main caregiver, you should have that. (Of course, they'll probably refuse.) But, you are underpaid, and underappreciated. They should be paying YOU, not the other way around. You are being used and abused, and you are the only one who can put an end to it. Best of luck, Willow. Your health will improve if you start to take control of what's best for yourself right now. It doesn't have to mean totally shutting the door on your parents.
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Willow, it sounds as though your parents have turned you into their slave....bought and paid for! Even though you are paying rent, they have a distorted notion that you are lucky to have a roof over your head, and the help you give them is payment for what you get back. Of course this is absurd, but obviously they aren't thinking clearly. (Maybe they don't have dementia, but they are delusional.) Their refusal to get and pay for additional help, even though they can afford it, is bull. They think they have you over a barrel. They think you have nowhere to go, no one else to turn to, and because you love them you will continue to be their slave. You're in a sticky situation, because part of what they think is true. You do love your Mom, and want to help, and you don't have the money for another living situation at this time....is that correct? You've said you left before, but always end up coming back. Is it out of duty and love for them? Or necessity for yourself and your financial situation? Or maybe both. The fact that they're both "sound of mind" makes it tough for you to get any control at all. If I were you, I'd make an escape. You'll be no good to anyone if you continue under these unbearable circumstances. If the town where you're living has any kind of shelter or living quarters that you could go to temporarily, to get out from under their control, you could get some peace and respite, and begin to repair your own health. You could go over to your parents' home once a day or so, check in, tell them you'd be happy to assist them again if they agree to hiring additional help, but that you will be dead if you continue to do it alone. Tell them you love them, but you don't want to die proving it. Once they're all alone without their slave to order around and attend to them at their demand, they might start to see things differently. I'd get their POA as well. If you're going to be their main caregiver, you should have that. (Of course, they'll probably refuse.) But, you are underpaid, and underappreciated. They should be paying YOU, not the other way around. You are being used and abused, and you are the only one who can put an end to it. Best of luck, Willow. Your health will improve if you start to take control of what's best for yourself right now. It doesn't have to mean totally shutting the door on your parents.
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Willow..BIG BIG BIG BIG TIGHT G/F HUGGIES GOING YOUR WAY!!!!

Yes Hospice care is for when folks are terminal and have not long to live. We had hospice for my dad who had Stage 4 Melanoma. Yes I heard that 'death rattle' that maggie sue spoke of....it was wierd. It was till later someone told me what that was.

MaggieSue...when they are nuts...just give it time...they will do themselves in at one point. Does your mom have any thyroid issues...that also turns them into nutcases! Actually my mom got hauled away before the last stint last year. When she was 81 5 years ago...I was taking the truck (dad's old truck) around to warm up engine etc...and I stopped in at a dealership to look at some new cars and I had a bad fall in the parking lot and could not get up...I was yelling for hellp and no one came...well finally I got myself up and when I arrived home...man oh man....there was police handcuffing my mom to the guerny...while I was out she was acting up against the neighbor...have no clue what spurned it on..but she was hitting my rental car at the time and a neighbors car with a stick...so the neighbors called the police and when they could not reason with her called the paramedics. They hauled her away and I had to find her in a hospital lock up for observation...after a few hours they let her go..but all the while in lockup she was still beligerant about why she was there...and could not comprehend what she did wrong...cause in a Narcissist's head THEY DO NOTHING WRONG...yes I am so done with mommy dearest and all her nuttiness. It's contained now cause she on meds and pretty much older..but she can still act up to those careing for her. She likes to wail now...NOOOOOOOOOOOOOOOOOOOOOO when she doesnt want something or like something. Can't wait for it to be over...and have told her so on many occassion...it don't sink in..she don't care.
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Fluid in the lungs. I heard it too, when my grandmother was passing...One week conscious, next week fading, last day death rattle slowed breathing, waited till we were out of the room to leave. probably our energy kept her hanging on and she just waited till we left her alone so she could go. So strange the dying are alive but when we went back into the room she was gone. Just not there any more. you felt it. It was a very unreal situation. She had uterine cancer. But was not in any pain...
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Josomebody....that's the same thing that happened in our case.....we knew something was going wrong when the 'death rattle' was going all night (it was more like a very loud moaning)....we called hospice and they said yes get prepared. I was out of the room with my mother calling a mortuary with just information and when we went back in the room he was gone. I have also heard they don't like to die when we are hanging on. When my g/f's mom was dying in the hospital the nurses actually told them to give them mom some respite so she could slip away and that's exactly what happened.
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That is so weird...it is just like all our energy keeps pulling them and they just need a little peace to be able to slip away or cross over or pass on on end or what ever...I have heard that a lot...

I held her hand and said I Love You over and over but unless she was on the ceiling she didn't hear it.

Maybe we really do die alone in that respect anyhow. Who wants an audience?....
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I just want to go in my sleep...nice and easy!
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Exactly, and after have given away worldly good and bequests no hassle no fouls no family fighting over the coin collection shit!
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I sure do feel for you. I take care of my mother and it is very hard. No life and physically and emotionally draining. Are your parents abusive to you? My mother is very abusive and sometimes I just feel I can't take it any more.
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I have always felt death is a very private affair. I don't want anyone around when I do it. I enjoyed the discussion about being with dying people. I'm glad to know that it's okay to leave the room. I didn't want to be in the same room with my dad when he died. In fact the whole family (such as it was) stayed in the waiting room. I've always felt uneasy about that. People tell stories about how their "loved one" died in their arms. I don't want to be on either end of a situation like that.

Thanks.
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It is a very personal and familial thing. Private is right. For some every moment of closeness is important for others they want some distance both are OK I think..
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And people don't believe in Vampires. I live with one. My whole life I never realized what a blood sucker she is. Maybe it was because she was so busy doing everything she ever wanted feeding off my Dad. Maybe that's why she has no friends, she already bled them dry! I just know that she is sucking the life right out of me. This past weekend was the worst. I told her we can't keep going on like this and she said she will talk with the hospice nurse to see what her options are. UGH! I've told her, her options. Even the hospice Dr. and Nurse are sick of her. 2 years on hospice and she has sucked them dry as well. I had to LOL at the 'Ensure/death rattle' OMG!!! Too funny! Mine has COPD, she rattles all the time. Lack of O2 makes her even crazier then she already is. She forgets that she eats and tells her two elderly sisters (they live out of state, in nursing homes, so they are NO help) that I haven't fed her. There are so many times I want to just walk away. Thank you all for letting me know that I don't have it as bad as some and that all the inspirational BS people tell me....'you're earning jewels in your crown' is a big crock of $hit. Speaking of, need to go check the vampers pampers.
Hugs all!
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Why don't you contact hospice & have a home health care provider stop in to see you & let them meet your parents in a way they won't find threatening. I think alot of times worry & frustration from those who are ill comes from fear of not knowing or understanding. They feel as though their independence is being taken away. It's easier for them to know & trust that you will be there for them. Set it up like a friendly chat & then they can feel comfortable & might even ask ? of their own.
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I understand how you feel. I have been staying with my Mom for a year now. It is the hardest thing I have ever done. I lost my Dad 8 yrs ago. The hardest thing is to accept what reality is..I have lost it a few times and everyday continues to be struggle. My only sibling won't help at all. My Mom get very angry and abusive and at times has hit me, spit on me, etc. After the initial shock I realized she can't help it, but it hurts. Remember, God only puts on us what we can handle. We are doing the ultimate for our parents. Good luck and God bless all of us caregivers!!
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Sanitylost...I agree with you wholeheartedly.....yep Vampires and Wicked Witches indeed do live..LOL! I agree about the BS as well, it don't help!

Hugs to Kathy TODAY!

....FOLKS there a lot of us other there going through this hell, so we are not alone in that manner! That sole thought helps me get through it...that I am not the only one doing it!
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You can't have hospice come in until two doctors say you are going to die within six months. You can't just call them and ask them to come over. If that was true I'd have done that a long time ago.

Get real!
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I think Maggie is right it is a referral and they ask if you would like to use them...
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I think of it this way - my parents gave their children the world and went without things so we could have an incredible childhood & loved us beyond belief. I would never think that one of my siblings should take the full burden of caring for my mom or that all the weight should fall on my dad's shoulder. We are a family then & now. Regardless if one is single or married shouldn't fall in who gets the "burden" as I see it stated here. My mom shares in our lives & the lives of her grandchildren to the fullest & has shared all of our tears & joys. How could we ever offer her less than what she & my dad dedicated their lives of giving us. We have grown even closer since learning of the diagnosed & try to keep her positive even when it's hard we never stop trying. Respect is a two way street & I personally would never treat my mom with disrepect- she may get forgetful, she may act up but she's not a child nor should she be treated as such. Laughter & smiles still fill her home even in times we all feel like pulling up the covers & shutting this out-it's not going away but it's how we approach it & live every day to the fullest & ensure she knows how much we truly love her that is what is important -I'm not about to waste precious time I have left with her be a battle & if I get to spend more time with vs my brothers then I'm the one who was blessed for that opportunity and those memories will get me through when one day she is no longer here. Acceptance, respect, hope, faith, love & dignity to all involved is how it should always be anything less than that is selfish and not what my family is about.
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Maggiesue: Actually you can call hospice as they do more than just endcare assistance & they do come out & do offer alot of assistance from relieving family members for a few hrs to light housekeeping. Many hospice facilities/group have worked with families for 2+ yrs not just 6 mos & I know this first hand from my friends parents-my best friend's mom had breast cancer & hospice helped her family in so many ways along the way. Thank god she is now in remission for the 2nd time.
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Faith:

Your mother has a diagnosis so maybe that's why you can get hospice to come out.

My mother is well. There is nothing wrong with her according to her doctor.

She is just mean and abusive. I am not talking "acting up" here. You are very lucky to have parents that treated you well. Sounds like you have no idea what parental abuse is.
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I Have to say that wether they WANT to hire help for you or not, isn't the issue. You MUST get some help, Martyrdom isn't going to work.
I've only just realized this myself, it was tough for some reason to accept, but when the responsibilities we carry become unreasonable, We have a responsibility to make the needed changes or step away altogether.
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Kathy, I wish I was there to give you a hug.

I am in the home care business and this is something we see all the time but I must admit your situation is at a critical level.

See if you can open up a conversation about you getting power of attorney (POA) or at least on a checking account so you can help manage their finances. Other responders have said what I am supporting is that YOU are the one that needs help. You need help in caring for them and they have to realize that you are on the edge of a physical and mental breakdown. Ask them who will take care of them when you go down? Get someone in there for a few hours a week so they can get used to it and then increase the hours.

God bless you for all that you do and know that you are building up treasure in heaven.
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I feel so bad for you. It seems that you are running empty and you can't afford to do that. Your parents need the medical care a STAFF of people can serve. You don't sound like a medical person and I would think one medical person couldn't handle the hourly needs of 2 people. They need assisted living to be happy and so do you! You have a good heart but that isn't enough in this case.
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Willow it sounds do me like the best thing for you would be to get out of their house so you could visit them on your good days to bring groceries etc. I know money is an issue so if living with your step sister isn't an option, check into the Berks County Housing Authority they have income based housing. There is probably a waiting list so get on several of them in your area. Putting some distance between you will help you determine what has to be done as opposed to doing everything and give you some space. I can't imagine being in your position, but I sincerely wish you the best. Take care of yourself!
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