How do I rid myself of intense guilt when I must leave Mom's side at hospice?

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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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Dear Suzmarie, Granonthego, Lizann, NancyH, and whoever else I forgot,
Suzmarie, the morphine that I was giving Mom at home was in a liquid form, its not that the one at hospice is better, only that they changed the type of it and know when it needs to be changed, what kind and when to give it and times she gets it. She was getting at home, only 2.5 ml.--taken as needed. And if she was still in pain, I could give her more, up to 1. ml but no more. But then all she did was sleep the day away and not be lucid, awake, and shaky on her feet even with the walker. Now, the morphine meds she gets at hospice is one pill in the morning and one pill in the evening--a long lasting morphine pill, and in-between if she is still in pain, she gets the former liquid one that they prescribed before, but so far, she doesn't need the liquid one, the two long lasting pills are working wonders....she is in no pain. Only sometimes she needs to take the liquid one, but very rarely, actually almost never. Hospice knows what to do and what to administer when medications are not working, whereas, if she was at home, an in-hospice nurse is never as good as being IN the hospice itself. Plus, hospice uses different creams for her anal area and body than the one the in-home hospice nurses where giving her, they change meds as Mom's condition changes immediatly, and an in-home hospice nurse wouldn't know what to do without a doctors examination, and they never stripped her of her clothes and examined her the way the hospice RN's and CNA's hospice does every day. This I do not know why.
That is a wonderful suggestion about having one of the CNAs be in the room for comfort and security for Mom when I must leave. She loves all of them very much. But I do my best to schedule it so that I leave when Mom falls asleep.
NancyH--we do have a white board that I bought a while ago and I will ask if I can hang it up where Mom can see it--wonderful idea! Thank you.

Dear Granonthego--yeah, ok, I guess I was trying to play God [not on purpose] and control everything but that only made me worse and then I had the black eye when I ran into the door one day. Your advice is stellar and hits the bulls-eye every time you write to me. Thank you so much. My left eye is still swollen and the cut it still there. Stress related injury. You are so right about the co-dependency feelings. Actually before Mom got really bad, she is and always was addicted to me. Even sis said that. Now I am addicted to her and she is still addicted to me. She calls me her "princess" all of the time. And I was beating myself up all of the time and that's why I lost all of my appetite, stopped doing the things that once gave me the greatest thrills,stress and emotional pain and walking into doors and stopped riding my bikes. But I have been to the gym to work out two times already to strengthen my legs for the time I get on my bikes!! So yes, I am being accountable to you!! Please give me a hug for this? But I still have no appetite and have lost more than 10 pounds. The stress and love and pressures do not just up and disappear just because Mom is in hospice. I think that it will take a long time for me to recover [mentally and physically] from two years of this. I know you understand this.
Dear Lizann, thank you for your wonderful advice, and yes, I do think that I am still in "caregiver" mode as you said, its just that she moved into a different bedroom. Yes, it is very difficult to "let go", but we did make the correct decision for Mom cause I and my CG's could not manage her pain and all the new ailments that kept popping up. It's just hard you know, cause I love her so much, and letting go and Letting God, is what I struggle with every day. Yes Lizann, my visits helps Mom tremendously at that time even if she does forget by the afternoon. She is so very happy when she sees my face and we talk together.
All of you ladies are wonderful and this is the best thing I have done for myself in two years. I used to just read all of the time, then I knew that I must join and talk with all of you--who else can one talk to about these things to other women who totally, totally understand how you feel and what you are going thru?
May God Bless all of you , make His face to shine upon you, and give all of you His Peace. Love you all, lefaucon.
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Guilt doesn't go away easily especially when look at their faces and expressions.
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You should feel no quilt, you were the primary caregiver for 2 yrs. You sound like you still are her primary caregiver, you just moved her to a hospice situation so she could get pain relief and proper care all the days of her life. You made the correct decision for her. I think your visits help her emotionally even if she forgets later in the day, she appears to remember you each day when you arrive to help her. When we are primary caregivers it is difficult to "let go" a bit but you are still really caring for her by your daily visits, prayers and I am sure she is in your heart all day. Don't feel guilty you are doing an awesome job.
Elizabeth
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Hi there Lefaucon - so glad to hear that you have taken the step of putting your Mom into hospice. You cannot play God in your Mother's life. You can only do what you can do, which is all God requires of you. Perhaps you should ask yourself honestly whether your guilt feelings result from your own feelings of inadequacy to change her situation. It is indeed painful to watch a loved one suffer, but when we are acting in their best interests with the best intentions there is absolutely nothing to feel guilty about. That kind of 'guilt' is just a way of beating oneself up. If you take time to read Melody Beattie's book Codependent no More.
One of the definitions of codependency is 'addiction to another person.' Still praying for you.
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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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Please help me with understanding how the pain meds at home are different then the pain meds at hospice so that I can get my mom the best meds when it is time. Why are the hospice meds better than the meds they gave you at home--shouldnt they be the same? this makes me scared.
when i first left my mom for the first few weeks at the nursing home it was awful..i couldn't look at her i just had to walk away. My suggestion would be to have ahospice volunteer come into the room before you leave so that when you leave the voluteer can distract her with some kind of distraction. if a volunteer cannot do this hire a caregiver for 4 hours from an agency to do it. I never just leave my mom anymore i always hand her over to a cna and it works out best...she forgets me.

make sure the lap blanket has your smell. you are very lucky if she still knows who you are.

I have heard so many positive stories about patients getting better under hospice care!!! I am so glad this is happening to her and pain free!!!!
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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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Dear Sunflo2, Bayoubaby, sandradawn, graceterry, sumlerc, marymar, and Braida,
Wow, waking up and seeing all of your loving suggestions is a blessing from God! I did not expect so many caring people out there about my question. Bayoubaby is so right. Mom would not want me to be unhappy and sacrifice my entire life and only live it for her--if she was in her right mind. She would want me to go out and live my own life and be happy.
Yes, graceterry, my Mom and I believe in the Lord Jesus Christ and Mom has said the sinners prayer with me and we pray every time I am there and I read the Bible to her, so I know her future is totally secure in heaven with God. The Lord has greatly lifted the heavy burden off of my back, but alas, I am still human and have human emotions, so I still feel the pain and hurt. Plus, Daddy just passed away this past May, [I was caring for both of them until Dad had to go into a care home] so I have had a double whammy this year. I still hurt extremely for Daddy and I miss him terribly. This has been the hardest and most painful year of my life. But when I turn to Him, He gives me His peace and comfort. Yes, we cannot just believe in ourselves, we do not have the power to do so, to change things, to control everything, we must give it all to God, it is His battle and not ours. I pray that every morning.
Mom was on in-home hospice before we were forced to place her in the hospice home. She was in excruciating pain, the morphine wasn't working and her stomach was distended and hard. She was in excruciating pain day and night also because of the tumor that has grown in her large colon since she had surgery there two years ago--which was cancerous. She couldn't go pee or poop by herself at home and I did not have the equipment, proper RX, nor the skills and knowledge to take care of her. They catheterized her immediately at hospice and all the brown urine came out in the whole bag that was stuck in her bladder for two months, I could not have done that. She is also on different kinds of morphine and on an RX for the itchyness, and other meds that is a side effect of the morphine. I and even the in- hospice nurse,who came 2x a week could not handle all of this. Even my two caregivers do not have the equipment necessary to handle this sort of symptoms.
Mom is getting so much better and in reality, I do think she can come home if I upped the caregiver schedule and increased the hospice RN visits. But now I am afraid if anything strange or weird should happen I would not have the knowledge or equipment to handle such things. And I know for sure sis and bro would not want Mom to come home with me taking care of her and a hospice nurse coming only 2x a week [but I can call and they can come more often] and even if I upped the caregiver schedule. They would worry about Mom not having 24/7 hour professional care. I would too, as much as I want Mom at home, and miss her terribly I am afraid that I wouldn't know what to do should something bad happen to Mom that I could not address immediately. So I am stuck in this "wanting Mom home, and wanting Mom in hospice for her own safety." I am the closest to Mom and Dad and am the child who is emotionally attached to them, so its much, much harder for me than for my two siblings.
Thank you dear ladies for responding to me, your advice and council is precious to me!!
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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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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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