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Lately it seems like my Mom will have a really good day or two and then it will be followed by one or several where she almost appears to be passing. Today is one of those days...yesterday was one of the good ones....I am pretty sure it is all part of the process of this disease, but the extreme highs and lows and always being alone to care for her are making me feel like someone is slowing draining the blood out of me. I am dragging this morning, trying to just go about the daily routine, she is resting, I am keeping an eye on her....my right leg continues to feel like it is going to explode and I have zero energy. I just want to sit down in the middle of wherever I am and cry...if it would help, which it won't. I am pondering the course of the past couple and a half years of no help from the sibling and now I am about to lose my house...to which he told me..."gee I hate that"....I still have personal belongings in my home because I have nowhere to put them here because he continues to use Mom's house for his own personal storage area. I have one cousin who "helps" which means she comes in the door, sits down, and waits for me to bring her a cup of coffee. She does not change my Mom, does not feed her, unless I call her on the phone and tell her to do it...she always tells me well I asked her was she hungry and she said no....I have to constantly tell her....Mama will NEVER tell you she is hungry, you just have to get it and offer it to her and then she eats. I am having a pity party I suppose....without the hats and balloons because I can't afford those....ha.......

My only sibling got 75 % of my parents assets after my Dad passed and yet never helps out whatsoever with anything here. And still I would do it over again, but I am just wondering if I will ever be able to feel close to my sibling or any family members again as this has been the lonliest road I have ever walked. I watched Joyce Meyers the other night and she was saying not to do exactly what I am doing right now, but I have been trying to be optimistic and it seems the harder I try the more I feel totally overwhelmed.

I am currently trying to clear out a bunch of "junk" that my sibling did bring here...all a bunch of crap they did not want anymore...it is old, it is stained, and yet he thought we might want it. He calls this helping. I have tried to gently tell him we have plenty of this kind of stuff and just don't have room for it, but when I have done that he blesses me out and starts yelling at me. I have never been one who backed down from anything in my life, but I will admit, the ugliness of that whole dynamic is so painful for me I just let him boss me around and chew me out and talk down to me and try to get over it later.

I'm not sure why I am writing this...Mama is not sitting here staring at me and that is driving me crazy too...Who knew when I was a little girl and dreamed of my life this is what I was dreaming of...I will never be the same again..back to work.....

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The roller coaster is killing me. Mama had a horrible day today, I had a migraine, I was worried sick...our regular hospice nurse has been sick and they were afraid she might pass on a bug to Mama or to me, and so a different nurse just showed up right about the time I finally gave in to lying down for a nap. so I got woke up right as I was falling asleep which made the migraine really kick into high....then Mama and I both woke up, she was much brighter and has been laughing again tonight. I am thankful. I want her to stay with me as long as she is happy and able to enjoy it. I so feel for you. Up and down and up and down, living with the constant knowledge of what is definitely coming, but of course it is coming for us all, but still, unless you are experiencing it first hand you really can't understand. My brother comes about once a week, is only here for an hour or so and so he is not constantly living in the whole "watching her breath and worrying" constantly...many times it feels like he has already moved on. I agree that if you have to pay someone as much as you are making then the common sense thing to do would be for her to just pay you, otherwise you are working and then you still have all of this to do when you get home. At least my migraine has lifted a little bit. I am going to try again tomorrow and try to brighten up. I know when I stay in a good mood it helps Mama. I try to sing to her and laugh with her and the more I can make her laugh the better she seems to respond. But it is hard trying to stay up all the time with all the things surrounding us, right? Prayers for you too.....and thanks :)
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I so understand where you are! My 76 yr old mom with emphysema had pneumonia again this year. She was in the hospital for almost 2 weeks and plunged into full blown dementia. She came out of the hospital on a Fri and I had to call 911 because she woke up meaner than I have ever seen her and was hitting, kicking, scratching and cussing me!! I had nothing to calm her down with so they took her back to the hospital for another 3 days. She wasn't eating or drinking and pretty much in a semi-comatose state. A doctor told me she had 1 maybe 2 weeks to live so I transferred her home under hospice care. After being at the hospital with her except when I was at work or at home to sleep I was exhausted then the realization of her imminent death and the transfer home with the emotional talks to my mother I was on overload. Then she woke up the next morning at home and was very bright eyed and mentally clearer...then the next few days she slept...I made funeral arrangements...then she was alert and fairly clear. Yesterday I had her up walking a little bit with her walker thinking I could go back to work next week (on FMLA). Today she is sluggish, some inappropriate responses or questions...I'm now re-thinking going back to work at all! This rollercoaster sucks!! Oh yeah...I'm an only child so there is no other sibling and my husband has been somewhat accepting of my FMLA but now I might have to quite altogether. I cannot do it all...plus why should she pay someone almost as much as I make to sit with her...she could pay me instead.
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Sadly, no one is going to step up for my Mom...Two weeks into this my brother informed me that if it got to be too much, "we" would sell her home and put her in a NH. And easy enough for him to say as he already got three quarters of the estate over 18 years ago. The only thing remaining is this house and it was to be mine one day, but Mom never would put my name on it because she said if she didn't have this then that would mean she didn't have anything left...Now at that time, I know she was not really meaning it like that because she meant to put this in my name, but she never did, so now, of course anything she has left will go to the NH if that ever transpired. And additionally do not want to put her in a NH...I just need a break...badly. I am going to get with our hospice nurse about respite care....I fear if I dno't have a break from the constant gloom and doom I am going to lose my mind...or worse.
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I think respite care is a great idea. Give yourself a break from the day to day. It might be time to move mom into NH; at least consider it and possibly move back to your home. Sell moms home and use the proceeds to pay for her care. Situations change as the loved one needs more and more care and that doesn't mean we have to continue to push ourselves to rise to that level. It's okay to realize our limitations, be grateful and applaud ourselves for the care we've given and sacrifices we've made, and move forward or allow others to step up.
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I totally agree, with both posts...only problem is with my visitors....there is only one, and that one isn't going to do anything. period. she does sit here and let me get away for a bit which I suppose is invaluable, but all she is capable of is sitting. but it's a happy thought.

I have decided as soon as it can be arranged, I am going to see about getting Mama in respite care for a few days. I can feel it....my health is on the skids.
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Joyce Meyers can afford to build her mom her own nursing home right outside the back door and she can afford to staff it. :-)

I think crying is OK. I guess it technically doesn't help outside circumstances but it can be a release.
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When mom has a good day, we are good. When mom has a bad day all our feathers are ruffled and we have to find ways to let it go. It is what it is. Don't wait on visitors, assign them a chore, like folding laundry or making YOU a cup of coffee. The joy is in helping.
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