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My mom is at the end of her days on hospice care and she still recognizes us. My brother sister and I and our families all live very close so one of us is there daily to visit her. I have gone almost daily. She lights up a bit when she sees her grandchildren walk in or even her best friend. It is hard for me to describe my relationship with my mom but it was the most beautiful love story. She and I have always been so close and I am 45 years old, however just recently she doesn't want me or my dad there. She won't hold my hand and she speaks very few words but has mustered the ability to tell me to "get out" twice and she looks at me with total anger and almost detest. She is only doing this with me and my Dad. I am heart broken and its making the end even worse. I don't want this to be what I remember. My loved ones are trying to justify that it is because we are the closest and also my Dad, her partner for 56 years, that it's too painful for her to leave us so she has to pull away. I haven't found anyone else who has experienced this. I want to honor my mom's wishes but has anyone experienced this first hand? I would be so thankful to hear any feedback or advice on how to get through this.

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It is possible that she can't bear to see you or your father because she doesn't want to think about leaving you two in particular. Certainly that was my first thought once you'd explained that you and she had always had such a lovely relationship, so it couldn't be that there was anything like conflict or past hurt that she might have to deal with.

Don't you think that makes sense?

But it can't make it much easier for you. Can you and your father perhaps think of things you can do for your mother, in the house but not in her room? Setting her breakfast tray, folding her clothes, the kind of task that you can do with loving care without intruding on her. Also, I should stay nearby anyway, in case she changes her mind.

What does the hospice team advise? They may be able to put you in touch with counsellors. Of course they are there for your mother, and they will prioritise her needs and wishes, but supporting family members is also part of the hospice role.
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eselman1 Feb 23, 2020
Thank you so much for your kind and thoughtful answer and also just for taking the time to write me back. Those are great suggestions. I met with the hospice social worker on Friday and she was a great listener but wasn't able to provide any feedback. I would love to believe its because of our special relationship but I just don't know how to tell my mind to tell my heart. All I want of course is to be close to her in these last days. its so excruciating. I will go today again and try. Thank you
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4. See It From Their Point of View: While it’s impossible to know exactly how another person is feeling, trying to see things from their point of view can help you understand why they are acting a certain way. Think about the dying person’s life—everyone he loves, the activities he enjoys, the work he did, the dreams he has for the future—and imagine being robbed of all that life holds for you. Looking at it from this way, it’s no wonder that he is angry. He stands to lose everyone and everything that has ever meant anything to him. Remember also that oftentimes the underlying basis of the anger is really fear—fear of the unknown or of future physical pain among other things. Really listening to those concerns and encouraging a loved one to discuss them with their health provider to address and perhaps ameliorate some of the fears.

Go Ahead and Get Mad...at the Illness Itself: Understanding where a dying person's anger is coming from helps you realize that his anger is justified. Redirecting anger towards the illness can help the dying person cope with their feelings. It might be helpful to be angry with the dying person's true target. After all, you stand to lose something as well. Go ahead and get mad at the illness.

5.Understand Righteous Anger: A dying person may feel embarrassed, ashamed, or shocked after an emotional outburst. He may say something like, “I can’t believe I just said that. That’s not like me at all.” You might be thinking the same thing. Realizing and accepting that anger is normal and okay can help a dying person embrace and move through the anger stage of the dying process.

Talking about righteous anger together and sharing in the discovery of feelings of loss can reduce suffering.

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About 10 days before my father died, he stopped talking to me completely. We'd spoken prior, and said what needed to be said, but it always felt odd to me that he'd NEVER uttered another word to me afterward. Granted, he was pretty much out of it for several of those days, but still. I'm glad you asked this question because this article has been very helpful for me as well.

Wishing you all the best during this very difficult time. And sending you a big hug.
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eselman1 Feb 24, 2020
This is really amazing thank you so much. Its incredibly helpful because I do want to think about her more than me....I was hoping there was something like this out there that I just hadn't seen. My mom really is the one being robbed of something more than me. I feel like I'm being robbed of her love and goodness but she is being robbed of losing all of us, all of her loved ones. It just felt so bad to think of her not wanting me, she has never looked at me this way. Thank you so much for taking the time to write that out for me. Im not sure you will understand how much I believe this will help strengthen me and heal me as I walk through this. All of you that responded, just such a blessing thank you. I absolutely plan to pay this forward and volunteer with hospice after my mom passes. I have so much love to give and I know after this I will be a better person, a more understanding and loving person, a better friend, a better listener. Sometimes all I needed during this past 18 months was someone to hear my stories about my mom and just listen. Thank you again and big hug to you back. Also, I am so sorry for the loss of your Dad. I know we never get over it, we never could.
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I went through something very similar with my mother and have seen it happen with others as well. Yes, it causes so much pain, but it doesn't have to. Firstly, it's important to understand that when someone is dying, their work is to let go of that which they hold dear. Attachment is very painful then. In fact, I learned that when the time comes to pass and someone you are close to is near by it can take up to take four more hours to pass, then if they are not there. Also, many people are only able to pass away when their loved ones have left the room. Gone out for lunch or coffee. The dying person is also filled with many feelings of sadness, loss and grief. This can also cause more physical pain as the stress of parting rises. You are so blessed to have had such a loving, close relationship with your mother. Focus upon that. Focus upon the love between you. That love cannot pass away or fade, unless you choose to focus upon the pain. I have found that the greatest antidote to my own suffering is to send love. Send her love, send her blessings quietly in your heart and mind. She will feel it. It will help her. And the deepest display of love now is not to make any demands upon her at all. Let her do what she needs to do at this difficult time for her as well.
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eselman1 Feb 29, 2020
this is so beautiful thank you so very much. this support group has literally changed everything for me, exactly why I posted and prayed that this seemed normal to someone. you are so right. no demands on her, she gave me everything. I would never want to leave her, I can't wait to see her in heaven again someday. Thank you for your kindness and the time and care you took to respond to me.
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A Catholic nun who’s sole career was hospice wrote a small book titled “Midnight of the soul” about her experiences with souls transitioning in death. In it she described stages and signs but more importantly the stories of patients and families. There is a chapter devoted to this seemingly odd out of character behavior. It seems to be expressed as a type of final protection for those people so dear they can not pass into with them present. I’ll paraphrase, but in essence some do not want you to experience Their last moments and cannot pass with you there. They may wait until you’ve stepped out to go to the bathroom or accept a phone call or anything that sends you away. They must take that step into another reality without you. Don’t take it personally it’s her love for you speaking. I’ve been beside two dear souls for days only to leave for moments and they pass. They are letting go of you, too. Please let her take this journey the way she has to. Be there, but respect her wishes. It’s how she needs it to be.
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AnnReid Feb 27, 2020
How affirming to see your words, as this is exactly what was thought in our family. Thank you!
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When my maternal grandmother was dying, my mom spent all day at the NH with her, thinking it was bringing her comfort.

It wasn't! Mom's presence forced GG to be 'there and present' and she wanted to go.

One afternoon I spelled mom off for a few hours. I asked GG what she was hanging on for--she was very aware she was dying. She said "Your mother won't leave me alone!" We talked of a few things, she said when mom wasn't there, Grandpa would come and want her to 'leave with him'....and then mom would pop back in and GG felt it was 'rude' to leave her there.

I told her that next time Gpa showed up (she'd been widowed 36 years!!) to take his hand and go. I told her I would ask mom to take some breaks.

Asked mom to stay home the next day and either go to Church or just sleep in--that I'd go stay with GG. I didn't have any plans to do so--but in the few minutes between night and morning, she quietly slipped away. Mother was distraught that she'd 'died alone' but I spent a lot of time calming her and saying 'dying, for GG was a personal experience and she was NOT alone'.

After the initial grieving--mom came to understand. GG had a peaceful passing and she got it the way she wanted. She was 95, so a good, long, happy life. But, oh, how she missed her sweetheart!
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Tmz2467 Feb 27, 2020
Midkid, this is a beautiful response. It reminds me of my MIL who passed this last August. I cried through reading your response. Thank You.
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I’m very sorry for you. I don’t know anyone who has gone through something like this. This might not be helpful to you, but maybe I see your Mom’s side. Maybe when she sees the two most important people in her life, you & your Dad, it makes it harder on her to leave this world. Also, could it be she doesn’t want you to see or remember her this way?
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eselman1 Feb 23, 2020
thank you so much. yes it could totally be that. appreciate your response and time.
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I went through almost exactly this with my Dad. He was my best buddy and did not have dementia - it was osteosarcoma that did him in. He completely ignored me or treated me poorly including to tell me that success was more important than his daughter (me) being there for him. I'd stand next to him and watch him light up and converse with my cousin, his friend, etc...everyone else...and then shut down when I stepped up. This went on for 5 months.

I didn't know this was possible except for one friend whose mom accused her of stealing when she was dying. This friend told me that it takes time, a lot of it, to heal.

This is an excruciatingly painful experience and this forum has proven the best place for questions and concerns like these. I can't add to their advice as I'm still struggling with trying to heal, but do know YOU ARE NOT ALONE with this heart breaking issue. And THANK YOU for posting this question!

Giving you a huge hug, and some flowers, and chocolate too. And another hug...
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eselman1 Feb 29, 2020
I am so sorry, I am crying with you. I appreciate your words so much, im so sorry for my delay. Where are all of my emojis that I want to leave for you lol> heart heart heart
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I would first try not going by every day and just visit every other day.

Make it as short as she wants it.

Don't even bring up anything about her telling you to get out.

Bring her a treat, give her a hug and kiss and as soon as she tells you to get out, just smile and say you love her and you'll see her later.
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eselman1 Feb 29, 2020
this is perfect thank you and exactly what I have started to do! appreciate you so much
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This is heartbreaking. Would you consider writing your mother a letter expressing your love for and gratitude to her and giving it to one of your siblings to read to her? I don't know if that would help her but it may help you tell her things you still want her to hear.
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Lostinthemix Feb 27, 2020
This is a GREAT idea in my opinion!
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eselman1 - so sorry for your pain. Could one of your siblings ask mom why she doesn't want to see you and your dad?
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