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I visit Mom every day at hospice. Usually in the morning so that I can help her with breakfast and makes sure that she eats all of it. I hold her hand, massage her feet, talk and touch her, and read the Bible to her. I always spend at least 3 hours with her. Sometimes up to 5 hours. But every time I must leave [like yesterday I had a doctors appt], she always gets so sad and hurt when I have to leave. She wants me there 24/7--like when I was taking care of her at home. I think she wants me to move into hospice with her. I am the youngest, was the primary caregiver for 2 years, and we are very loving and close to each other. I love my mother deeply, more than anybody else on the planet. It just kills me when I have to walk out of door and see her face so sad and hurt because I have to leave. Since she is far better healthwise at hospice, she is more lucid, out of pain, and even complaining, and she wants to come home. So she is voicing a very real emotion--not a delusion. And when sis and bro go see her in the afternoon she tells them that I never came because she forgot that I came--she has dementia and terminal cancer. But she has done extremely well at hospice. I couldnt handle the excruciating pain that she was getting while I was taking care of her at home even with the morphine.
How do I handle the intense guilt, pain, and hurt I feel when I must leave Mom alone? Because since she is better and out of pain, she is lonely there all by herself--which is totally understandable. She doesn't understand why I have to leave, and she won't understand even if I tried to explain. Any advice out there for me?

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I would encourage you to get to a caregivers support group ASAP. Also, if you are a person of faith, perhaps you could place your mother in the care of your Higher Power and let her rest there and also YOU can rest in the care of your Higher Power and ask that Power to relieve you of the guilt. Letting go of the guilt does not mean that you are uncaring, unkind, or anything less that a precious and devoted daughter (both of your earthly mother AND your Higher Power!). It just means that you are allowing yourself some freedom from neurotic guilt that does no good whatsoever for anyone. Also, I have found that sincerely praying the serenity prayer helps me in similar situations: "Grant me the serenity to accept the things I cannot change, the courage to change the things I can, and the wisdom to know the difference." I cannot change others. I can change myself (with help from MY Higher Power), including the way I think about things which usually changes the way I feel. Blessings to both you and to your dear mother, who is SO fortunate to have you and blessings to those at hospice house who are able to help her physical pain....As the good Quakers say, "I am holding you in the Light."
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You are so wonderful and caring to be there everyday and your siblings to going each afternoon. I give hugs to you and don't know how to alleviate your guilt. You have nothing to feel guilty about. I don't know if this will help, but maybe you could give her a special lap blanket or stuffed animal that she can have at her bedside telling her it can remind her that you're always with her and that you're coming back. Maybe tell her its okay for her to "take a rest/nap" while you're away until tomorrow. Its probably a momentary sadness when you first leave and then she drifts into a nap or drifts into her memories (if dementia) while your away. Do you have a picture of yourself or you and her together that you can enlarge and put where she can see it?

Do your brothers and sisters say she is very sad when they arrive? How about the nurses? I'll bet she rests once you leave. Its natural for them to want you by their side as long as possible. Maybe you can ask some of her friends to drop by one morning a week as well to help give her variety and not feel so alone.

I can't tell you not to feel guilty. I live far away and can't visit often with my mom; I know she is lonely and I feel guilty everytime we get off the phone.
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You are a wonderful daughter for staying with your mother in hospice. Remember though that if your mother was well she would be telling you to go out and live your life. Although their feelings change when they are older and scared, they still want you you to be happy and have a full life. I do not live with my mother in fact I am 800 miles from her. When I was there last week she cried and cried about how she wanted me to stay and not go home. I have a husband and 2 young boys and I just had to keep telling myself that if she was not ill and able to get around like she used to she would be telling me to "go back to my family". Just keep reminding yourself that your healthy mother would not want you to make this big a sacrifice. She is not being neglected and you said that she is doing well in hospice so you have absolutely nothing to feel guilty about. Make peace with what you are doing and know that you are loved so much by her no matter what!
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I wish I had an answer for you. I went through the exact same thing with my mom in the nursing home. I went six days a week and sometimes seven. I work a full time job and help my daughter take care of her daughter who has Cystic Fibrosis. It was exhausting, but I felt so guilty when I didn't go. She, too, was very lonely. When I would leave, she would watch me go out the door with the saddest look on her face. She has been gone for eight months now, and I still feel guilty. Guilty that I didn't spend more time with her. At the end, I sat beside her bed for hours, but I still feel like I should have done more. I know she is with God now and not suffering anymore and I try hard to dwell on that and not what happened before, but it is hard. So I really relate to your feelings. I will keep you in my prayers.
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I agree with all of the above but for me gracterry reassured me of my beliefs and my decision to place my parents in the care of our Higher Power. By doing this, the tremendous guilt and self doubt has lessend, not yet ceased but not nearly consuming my life as it once was, I had began experiencing anxiety attack and that is not like me. I knew I had a Higher Power and thats where I went and left it there.

My heart of heart knows that no matter how long, how much I visit or do for my Dad it will never be enough. When I kissed them both a see you later, Dad said "stay longer" well all he wanted to do was further quiz me about who was going to die first, when would he get better, when could he get his own home again so knowing the routine, I wasn't going to submitt myself to more of that. I always encourage Dad to talk to his Higher Power, don't look or ask me but I don't think he gets that. Mom on the other hand, claims she hasn't seen me in months, yet I was just there 2 days ago but she goes thru all the same emotions of fretfulness, don't leave us stranded, we're broke, etc. So after my constant redirecting, when I feel myself feeling like a bottomless vesel, I tell them I love them but I must go to work, take care of some business and I will see them later, hug kiss and exit. Repeat on the next visit.

I'm not nearly saying I don't think about them day and night, but for me, because I beleive in my Higher Power whom I beleive is the beginning and the end, the burden is not mine, it belongs to my Higher Power. The serenity Prayer and the 23rd Psalms give me the strength to courage to face another day.

Many don't like to talk about religion, and I'm not, I don't care what or who others beleive in, but I do beleive that if we only belive in ourselves, thats where stress, heart attack, strokes flouish.

My Mom is on Hopice care and that care comes with a Chaplain, maybe you should talk to your Moms Hopsice team, they are there for you too.
Thanks for writting this post, I really beleive we needed to make this connection.
Blessing to you and your Mom, I'm standing in the Gap for you. Blessings to you also graceterry.
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Is at-home hospice available in your area? If that is a possibility, maybe consider having her in your home with hospice coming in to relieve you of some of the burden. i only suggest this because you say she does have terminal cancer, and therefore you know there is limited time left to be with her. I am in the process of trying to move my mother in next door to me. I know my life will change and be more complicated, but at her age, I feel I can and should be with her more for whatever time is left.
If home hospice is not possible, please don't let guilt creep in. you are being a great daughter and I agree 100% with what others have said about your mother wouldn't want to think of herself as a burden.
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You, dear one, are in a tough spot but you (from what you wrote) are doing and giving your very best so just keep doing what you know to do and keep thanking our Lord that you are able to do what you are doing.......... some people cannot give like you are giving....... just remember, if your Mom was able to 'reason', she would be hugging and thanking you. May our Lord Bless you with His peace. Hugs to you dear one. O:)
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Hugs to all in this situation. My husband tells I am amazing in caring for Mother. My daily reply is ..it is not me. It is God's grace and strength that get me through each and every day. He is the wind beneath my wings through all of this because without my faith and God's gifts this gal wouldn't last a day as a caregiver.

Just wish my Mother had some of this faith for this part of her journey. She doesn't want me to read the Bible or pray with her. Makes silly remarks when I am doing my Bible study each morning. So sad.

God bless each and everyone of you!
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Dear Carrie80 and littletonway,
Thank you for your loving encouragement. Yes, every one tells me that I am doing a wonderful job but to me, its just something that everyone would do for their parents. I do not even give it a second thought. Even sis asked me how in the world could I ever do this for so long when she spent a night and week here and it drove her insane. But definately, littletonway, it is only by God's strength and enabling that I am able to do this. So, I agree, it is NOT me who is doing this, it is Jesus Christ. Read the Bible to her anyway, read the Bible to her when she is sleeping, pray above her anyway, talk about Jesus to her anyway. Remember, God's Word does not come back void!! The Holy Spirit will reveal Christ to her and open and soften her heart--do not give up, do not lose encouragement. The Lord will bless your efforts far beyond what you could ask for or imagine.
May the Lord bless all of you, make His face shine upon you, bless all of you with His grace.
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lefaucon, what I started years ago for my mother-in-law because of her memory loss, was what I called a 'brain book'. It's really a composition book that anyone that visits her or takes her anywhere, writes in it and tells what they did with her. I have to write with black felt pen and pretty good size letters because of her vision, but she can still make out what others and myself write. If I've taken her to a movie or a road trip, I always have to write what we did in it because she will forget for sure. Also I have put up a white board on one of her walls with the erasable felt pen, and if she needs something she will write it on there. And those who just drop in and don't write in the brain book, will say that they stopped by. Then when she tells me 'no one comes to see me except you', I can read from her book. Anyway, just an idea for you and your siblings to do for mom.
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