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Why do I feel so guilty when I know I'm doing everything I can? Cargiving SIL age 53 currently on hospice. She has end stage liver failure, psoriatic arthritis, CHF, breast cancer, fibro, 6 weeks ago she had surgery for brain hemotoma, suffering from hetactic ensepolpathy now with psychosis.Still feeling guilty for even putting her on hospice, she's better, she has stabilised physically, mentally it's still a roller coaster....but with respidol that's a little better too. Hospice RN shocked again, Lvns say they have no patients like her. Feel guilty because I'm mad sometimes because the liver part she did to herself. Mad because it's my family who carries the burden, then I feel more guilty. feel guilty to my own family because I can't put her in. NH because they're understaffed and she'd have to be restrained and share a room, and I'd have to be there all the time.Guilty because I have to treat her like a child because most of the time she's seriously loopy. Tries to wander and do things at 3 am. Guilty because I dread her waking in the middle of the night, we have to watch her every waking moment because she falls 2-4 a week no matter our safety measures, I resent her Other family and her absentee husband.

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It sounds like you have a lot on your plate right now. I suppose there are caregivers who don't experience feelings of guilt but I think feeling guilty goes with the territory.

I cared for my dad at home and while I can now look back and see that I did everything I humanly could for him, at the time I felt guilty everyday thinking that I wasn't doing enough for him. Now that he's gone I regret all those times I felt guilty. I did the best I could with what I had to work with. He had multiple illnesses and took a ton of medication and before he ended up in a nursing home I took him to his Dr.'s and other various appointments. But I still felt that I wasn't measuring up.

Only with time have I realized that I did a pretty good job caring for my dad.

I would imagine that if you're feeling guilty you're probably doing a great job because of that guilt. It's motivating you. And while my saying, "Don't feel guilty" won't make much of a difference I don't think you have anything to feel guilty about. Try to relax some and know that you're doing the best you can.
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Try not to confuse guilt with grief. Yes you are grieving as you are losing her. The guilt is all hers, the sum of all her bad choices. Nor is it yours to judge, that part you give to a higher power.
An inpatient Hospice facility would be appropriate for her and if the family opposes that, too darn bad. It's not fair to put this all on you, the burden will compromise your own health. Make the right choice.
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Your SIL is very lucky to have you. I am sorry that the rest of the family is not helping you. I don't think you should feel guilty at all because it sounds like you are doing everything you can. Try to go and do one little thing for yourself everyday even if you just drive around in the car and seeing or talk to yourself or just enjoy the silence. It is too much for one person to have to do all of that and know that you are doing the right thing caring for her even though she made bad choices.
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I'm not alone, Thank God...my mom to a great extent and my daughters help a lot. My son and husband take care of other stuff I used to do. I guess I also feel very bad for her. Although she tried, she never had kids. She was abused by her husband for many years that we had no idea of. She was the caregiver to her mom, my MIL in her last years, although we offerd many times and helped. I think maybe you're right pam, it's probably grief. I feel most bad about having to treat her as a child when she was so independent before. I want her to feel comfortable and safe when it is her time. I think we've given her some comfort these past few years....she used to have a 'go' bag packed at all times in case she had to run from her husband and if her mom kicked her out. I finally got her to feel safe enough to put everything away. It took her a year to unpack after she moved with us because she was afraid we'd kick her out....we never would. That's probably why still at this point I don't think of NH as an option, I want her to be able to go safe in her bed when the time comes. It's why we choose hospice, so she could do that. Right now it's okay, I just feel guilty for getting so irritated with her because at 6 am she jumped the doggie gate and fell again, because she wanted soda, which she has a small fridge in her room full of. My mom says I'm so nice, even when I have to get after SIL I'm nice about it. I just feel like this poor woman, has gone through enough....want to help make this part as safe and peaceful as possible. Family won't oppose anything. If she gets to the point of not recognizing us, I will put her in hospice care inpatient. Or if she graduates from hospice, I can't and wont do this without the services they provide.
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Like Eyerishlass said, the guilt is motivating you to do the best job you can. It's negative reinforcement, because the demands and stress of caregiving can diminish whatever positive reinforcement we get from doing the right thing. It's especially frustrating when our loved ones won't cooperate better in their own care, which builds resentment, because we have been trying so hard to help them. Sometimes we feel guilty for being happy when we know others are suffering or can no longer enjoy what we enjoy. Now that I've lost my dad to CHF, and people have been helping me who hardly ever came around before, I feel somewhat angry that they didn't help my dad when he was alive the way they are trying to help me now. I guess they assumed he had me and that was enough, but it's hard being a caregiver on your own. And when these people would call, all they did was brag about their vacations. If they can travel thousands of miles for their own pleasure, then why couldn't they come see him in the hospital once or twice? They claimed to love him, but it was just lip service! Even Jesus complained, "Could you not watch one hour with me?" (MT. 26:40). Some "friends" stopped communicating altogether after years of accepting our hospitality. I also remember times when relatives and friends did or said things that hurt my dad's feelings and mine. We have to learn to forgive, not only others, but also ourselves for not being perfect. Caregiving is rewarding, but it strains even the most resilient people. Your SIL is very lucky to have you and your family caring for her and just being around her so she isn't alone. God favors the compassionate -- you are creating good karma for you and your family. I hope that if I ever need a caregiver for myself, it will be someone as kind and empathetic as you, because I have no children or partner to care for me.
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It seems like it, endless worry as well...we love them so much that it seems like what we do is still not enough. We take this task of caregiving to make it as comfortable as possible yet due to the complicated disease, it jolts us in much more than ever...stay strong, and hoping for more good days
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