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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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I think Marymar's suggestion is good. If at all possible, I'd urge you to try Hospice at your home, since she only has a limited amount of time left. Your siblings could still come and see her in the afternoons, and this would help ease your guilt. Of course, try the Higher Power suggestion, but that may not work for everyone. It'd be wonderful if it did, but I feel I want to take care of my Mom at my home unless it becomes absolutely unmanagable, or if she doesn't remember who I am. I've heard that Hospice is the way to do this. Best of luck to you with this for your dear Mother.
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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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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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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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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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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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Dear sunflo2,
Thank you for your answering my question. And you are right, nobody can alleviate the guilt that I feel and I know that really shouldn't feel guilty but seeing her sad face makes me so sad. And yes, she has a big yellow pillow bee that I will bring to her and enlarge some pictures of the family so that she can see them whenever she wants to. Yesterday I stayed until she fell asleep and I think that's what I'm going to do now---time permitting. You see, she is getting so much better at hospice since she went in--dementia, terminal cancer, extreme pain, that I and my CG could not manage at home even if they gave us the meds and instructions. Hospice has all the special meds, tools, equipment to help her immediately and we do not. She is so agitated and wants to come home because she's not in any pain any longer. Yesterday she got out of bed 3x so they had to move her to a room right next to the RN station so that they could watch her! She is bored out of her mind and misses us so much. They had to catheterize her to get her urine out because it was stuck in there for over one month and her lower abdomen was distended and hard. Could we have done that for her? Definately not. So she is not ever going to get well and better so she must stay there till the end. But it still hurts because she doesn't remember all the excruciating pain from 3 weeks ago, or the falling from the walker or any other bad thing that had happened. All she remembers is the good times, and she doesn't realize what I go through to take care of her. She thinks that she can take care of herself. I'm going to ask my Auntie to visit, she is the last of my Moms family. Mom told me not to tell Auntie that she is there and not to visit. But now that Mom is more lucid do you think its ok to tell Aunty to go and visit even though Mom told me not to tell Aunty anything? I think it will do Mom wonders if Aunty goes and visits Mom.
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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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