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Dear Eselman1: So sorry to hear your situation. My mom passed away in December while in in-home hospice. My sister and I were her devoted caregivers and had a similar living relationship with her but as her dementia progressed it seems as if she turned completely against us. She spoke to us with hate and contempt and just hated the very sight of us for no justifying reason. I totally agree what people are telling you. For some reason this monster illness has yet that peculiar characteristic. Think of it as your mom’s illness and not your mom. Be comforted by the love and compassion you have for her and pray for strength and discernment. That is NOT your mom speaking, it’s her illness. Just tell her how much you love her! At the end, there were times when she really did not know who we were even though she knew our names, she did not know who we were in her life. Hang in there and be steady in your demonstration of affection for her. Don’t let her unintended rejection keep you away!
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Sounds like you need to talk to her doctor quick. Maybe just a tweak in her meds would change this bit of obvious dementia... you cannot blame her--- it is a disease. And it is unpredictable. Tell the doc to tell her it is to help her with any pains she is having. -- Oh and you cannot honor the wishes of someone who is not herself. So put on your Adult/Parent boots and look the devil in the eye and find a way to change the situation. Now-- it could be the "hospice care" which really amounts to very little care. She IS your mother. Get your father on board and do it all quietly. The rest of the family does not need to be in on the emotional rollercoaster. My mother was ugly about certain things she could not understand. This may or may not get ironed out. And you really do not want to give someone any meds that will make it easy to injure themselves, such as some sleep aids. You know she could have a wrong idea about why she is there and how she is being done away with. Hospice was not at all "understanding' with my mother-- and it really seemed their agenda was the most important as compared to my mother's leaving this world with a smile on her face. Have you consulted her church pastor or a chaplain ?
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Psyclinz Feb 2020
Duggan - I am sorry for your difficult loss, but your comment is such a harsh response! You are suggesting drug her up? "Look the devil in the eye"? Eselman1 makes no mention of dementia, it is much more likely to be anxiety or grief at leaving her most beloved ones.

I hope Eselman1 takes on others' helpful loving and empathetic comments and suggestions rather than these ugly ill-thought words.

Sending big soft hugs and much support during this heartbreaking time.
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dying isn’t only a process that happens TO you, it’s active. people who are dying are having to let go and it’s likely that you and your dad are hardest to leave.
When you and your dad are with her, are you acknowledging that your mom is actively dying (And not using language that suggests this isn’t the end)?
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This could also be my story. I was the sole caregiver for my mom. Her last few days she believed I was the reason she was dying. She smiled at other people, held their hands. But turned away from me. I tried to talk with her. She only got more angry. I was told by hospice this was typical of the dying to treat the ones they loved the most like this. But it still hurts.
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I'm so very sorry you're going through this. Some wonderful responses from others for you to consider.

I lost my dear sister--my best friend--13 yrs ago to pancreatic cancer. If she would have said she didn't want to see me because it "hurt too much," I would have said (lovingly) "Tough! It hurts me too much, too. I'm staying right here." I last saw her 2 days before she passed. I would've stayed by her side until the end, but my then husband insisted we head back home 4hrs away. As it was, my parents and daughter were with her. I wish more than anything I could've been there for THEM.
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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 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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Death and dying are such a personal experience. I've seen it a lot of times as an RN. Every person seems to have his/her preference of how to pass from life. Some folks wait for all the loved ones to be gathered around them... to the point of waiting for the long distance friends or family. Some folks wait until every loved one has had a chance to say good bye and given permission for them to pass on. Religious folks wait until they receive some version of last rites. Some folks pass while people are with them. Others wait until everybody leaves the room. Some folks need to hear that pets or family are cared for. Others need to hear that the financials are taken care of.

It seems your loved one is doing her own version of saying good bye. She may be thinking, "I already said good bye to you," when she sees you or her spouse. Instead of focusing on the negative, ask her what she feels she still needs to accomplish in life. Help her to accomplish these goals and you may find your times together more satisfying.
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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 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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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 2020
This is a GREAT idea in my opinion!
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Eselman1--I recall hearing that dementia sometimes causes people to turn against those who are closest to them. In any case, that fact that both you and your father together are receiving this "treatment" means neither of you has been specifically targeted (i.e., you aren't "guilty" of anything), and at least you have someone (your father) with whom you can provide sympathy and support.
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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 2020
How affirming to see your words, as this is exactly what was thought in our family. Thank you!
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I’m so sorry. The pain of watching a LO in their final phase is the hardest thing we’ll ever have to go thru but then to feel rejected has to be a great hurt. I agree with the others that it’s very hard for her to let go of you & your dad.
Still, somewhere in her heart she still needs you there. Take breaks and hide your hurt feelings when around her. Try to remember the good times. This is not your same mom emotionally and physically from years past. This is someone struggling to let go of a long and pleasurable life but wanting to be sure everyone is ok with that. She’s losing her control. As hard as it is, don’t take what she says personally. She sees you & your dad as the best part of her life and soon that will be gone. Be strong and pray for strength. You can do this. She knows how much you love her.
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There is a very sweet family story about the devoted and loving mother of three daughters who was never left without one of them at her side during her last days.

One day when she was very weak but alert and oriented, she told daughter A to go to lunch while daughters B and C remained with her. After a few minutes, she asked daughter B to got to the central refrigerator for some ice.

Finally, a few minutes more and she told daughter C that she needed sister B to bring a popsicle from the freezer along with the ice.

In the brief time she was alone, she died. Returning to her room, her daughters realized that she had, by strength of will, in her own way spared them the moment of her loss.
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My heart ached for you, as I read this. I can only think, as others have offered, that your relationship was so very close that she can't bear the loss. I don't know if your mother is religious or spiritual, but if she has a favored minister of priest, maybe that person could talk with her to see if somehow she can be made to change her mind? And I would agree with still remaining close by. Hugs to you, your Dad and your family.
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You don't mention if she has dementia. People with dementia sometimes do strange things. My mother who has dementia sometimes used to say that to me. Sometimes I would just go into another room and wait for about 20 minutes and when I went back it was OK. I kept going to visit her and that stage seems to have passed as she declines further. Don't give up on her and try not to take it personally. Your long period of closeness (and your Dad's) is what is important.
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Sometimes people do things during times of monumental stress that seem hurtful to others. My sister died young and she refused to see anyone but her husband during her last few days. That caused my mother a lifetime of sorrow - they were only 15 years difference in age and were best friends. We'll never know this side of Heaven exactly why she chose to do that.

Perhaps you can show up often and hope that she will soften her demand? I wish we had tried harder to see my sister. Please know - it's nothing that you have caused. You and your dad need to support and comfort each other, and you need that from your other family members, too.
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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 2020
this is perfect thank you and exactly what I have started to do! appreciate you so much
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The fact that it is you and your dad....the two closest people to her in the world, makes me think that it is just too painful for her.  There are some things in life that are unbearable and having you two there while she dies might be her "unbearable".  I know this must be so painful for you both.  I am so sorry.
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gaknitter Feb 2020
That was my very first thought as I read OP. It is common to have LO lash out to closest to them, related or not.
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I am so sorry you (and your entire family) have to go through this. There's absoluely nothing harder.

My beloved mom was in hospice in a hospital. She didn't want us to see her suffer. I was the closest one to her (besides her husband, my father, who she was married to for over 58.5 wonderful, incredible years). Her main fear was not about dying, but about leaving all of us. I was her closest child...her confidante, best friend. We told each other everything...no secrets. Despite her saying she didn't want us to see her like this...I did not leave her side for 13 days and nights in Hospice. I stayed with her, sang to her, held her hand, brushed her hair, made sure she received the pain medicine the minute it was due. It was THE hardest thing to do but, it was my mom. She would have NEVER left me alone so why would I?

Point being...despite what your mom says, she loves you and vice-versa. If it were me, I'd keep doing what you are doing (even though it's incredibly hard to see her like this). Know, in your heart (and your dad's, too) that she loves you tremendously and is scared of leaving you. She's not mad at you. Why would she be mad? You sound like a special, special person and daughter. You should be proud of yourself and how you are taking care of your mom. You are doing the right thing. My prayers are with you.

If you need to talk...I'm here for you.
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HVsdaughter Feb 2020
The voice of experience. Thanks, Billiegoat.
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This is heartbreaking to anyone it happens to. However, it is not uncommon. People who are aged or those whom are about to die sometimes want the good memories to be of one where they were healthy, and dont want you to see their decline or passing. They don't think as they are not able to do hard core thinking, only that they love you and feel that it would be too painful for you to see them this way. I would seek out the hospital social worker for your own peace of mind.
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I am surprised the social worker said she hadn't seen this before. This happens often. My mom was the same way, as was a friend's mom. They often lash out at those closest to them because they know that you aren't going to leave or love her any less. My friend's mom literally said the f curse to her and this woman had never said a curse word in her entire life, nor ever said a bad word about anyone. My friend just stayed close and understood that it was likely the pain that was making her lash out. Stay as close as you can and let it go. You are a great daughter and likely your mother will want you there at the very end. Hugs to you. So hard.
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When my father was dying, he did not want his mother brought to the hospital. She was a devoted mother. He did finally see her and it was so painful for him to see her. It was like he just could not handle to see her in such pain. Emotions are so hard for us to understand sometimes.
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This is pretty common. My Mom was still at home, bit told friend, today is not good but lets talk next week and set a time to get lunch. That went on for a year.
I found some excuses to be, In the area & just drop by...I lived an hour away, but did have some activities that were only 15 minutes away.

Often they do not want the ones they love the most to see & remember them at their worst. Try more phone calls!

Remember side effects of the illness or medications can cause urgency & long bathroom visits. Not what makes anyone in the mood for company.
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My close friend died a few months ago. She made everyone leave the hospital room. Told them all to just step out for a bit. So they did. She died as soon as they left the room. They feel she just didn't want them to see her pass. I'm thankful I was with my mom when she passed. Never saw anyone die before but she went with me by her side. Much better for me, not sure about for her. All I can suggest is try to focus on the good times and respect her wishes. But are you sure it's you she's sending out of the room. Does she even know it's you she thinks she's talking to? Bless you.
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I just went through this less then 3 month ago with my sister-in -law. She would let only me and hospice help her the last month or so. I was very close to Sandy. I loved her dearly. Every time I would talk about her sister, my wife, she would cry , but she would not allow her to come visit. I had a hard time even getting Sandy to talk on the phone. Sandy knew I was the strong one in the family and depended on me to carry out her wishes. She told me it hurt to much to see her sister or her nieces and nephews. I understood but no one else did. But I followed her wishes completely. Being her Durable Power of Attorney was a tough job. But had to be done. So do not take it personally, your loved one is protecting you, she loves you best, I know it, been there. God Bless.
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There is such richness in wisdom here on AgingCare, I think more than libraries can contain. Thank you eselman1 for bringing to light the expression "pay it forward". It rang bells in me so deep.  Thank you for those words -
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I have not experienced this but can imagine it is heartbreaking. Now is the time to use the hospice chaplain and nurse. I would think they might have experience with this and can either explain it to you or talk to your mother about it. They have seen many things so please call the chaplain and ask for help.
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Maybe she is trying to protect you and your dad in some sort of way? That must be painful. I realize you want to respect her wishes but I may be forced to say something like "Mom I love you and I know you want me to get out but I am going to stay. We don't have to talk but I going to sit here with you." You could also call the hospice social worker and discuss it with her. Peace to you and your family.
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ArtMom58 Feb 2020
I agree. I also think it's too much for your mother. Perhaps staying long enough each time to say "Mom, I love you..." then leave, but each time say what you need to say. I'm so sorry.
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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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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.

*************************************
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 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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