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Had I know how mentally exauhsting this is, I would have gone into another field....
That dealing with the family is sometimes much harder than dealing with the person with Alz...
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That if you are going to agree to be main caregiver You better be ready because all them siblings people you think will help Probaly will not .
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Not only is no one willing to help, they stab you in the back while you are sacraficing life, health, sanity and youth. I believe it is because they feel guilty.
No word from them in years...no card, call or even inquire about mom.
They will come crawling out of the woodwork if she passes.
To make a caregiver's contract. Although that sounds silly to me even now.
She's my mom. I love her.
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The thing I wish I would have known about is all the decisions you have to make that you are just not prepared for such as DNRs, hospice and nursing homes, it's just overwhelming.
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That it makes life so wildly unpredictable, you need back up support in some form to backstop you somedays and deliver respite care other days. Although the actual answer, for me, really is, "don't do it." That's the truth.
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I wish I would have understood how Medicare actually works. I was told in the hospital that my mother would have 100 days at the rehab center. We get there and find out that while that is true, the patient must be improving to qualify! Mon is non-weight bearing for 8 weeks. We could have taken this money and gone to the Ritz Carlton and fed the sea gulls for 8 weeks and then returned for physical therapy. Also, much, much earlier that what I did, I would have recognized the need for outside help and not have put it off to appease my mother. Didn't want to anger her!
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Well, tbailey and GrandpaHiker answered for me. I too have 4 sibs. I wish I'd have known that all the love that is so freely expressed in my family, was just lipservice.
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That I wish that I would have done something more with my life and made better choices and not have so many regrets.
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That its a job that you can't quit easily. Once you're the help, you're always the help. There's no way out. I would've moved far away if I knew I'd be stuck here being their complaint department, errand runner, grocery service and driver. I'm resentful. I'm lucky in that they don't live with me, and they never will. I'll never do this to my children. Of course, after having a grandmother live with us when I was growing up, my mother said she'd never do this to her children. But, she'd move in with me in a second if I offered it. She's forgotten. I hope I don't.
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I wish I had know not to expect any help from my four other siblings. However, I would still make the same decision to try my best to make my mothers final years as good as I can for her.
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