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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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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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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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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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I recall being devastated to learn of my Grandmother's passing 1986 from my mother who had driven from out of state to have her last visit with her mother, along with her 3 brothers (my uncles). I expressed regret, and how I wish my mother had shared with me how ill my grandmother was and I would have stopped all I was doing to visit with her one last time. My mother told me "Gramma requested only her 4 children be present" (no grandchildren, etc)... and within an hour of her last child showing up (i.e., my uncle who flew in from California) she passed. My mother went on to say "she really loved you kids" and I realized our presence would have made it too painful & too difficult to leave her body. If you and your father can find peace with saying your 'last goodbye' and tell your Mom it's okay for her to go home now and you will meet with her again in Spirit and you will still have all the love and memories to share (all that changes is the form our Spirit takes on). I'm not just saying this, I believe it 100%. My loved ones passed send signs they hear me when reminiscing about all the good times, and even hear me say "don't be sorry for ... (I understand)" ... or "I'm sorry when I (said/did this)" ... Time doesn't really run out on us. It's just our not believing Spirit lives on forever that causes us grief. Your Mom is not angry with you or your father; she's angry her time with you is running out. Maybe let her know you'll be still communicating to her with your heart & thoughts and will be looking for signs she can hear you. This helped me so much in my grief. Her anger with you is an expression of love in the world of the dying. So sorry you have this pain in your heart, but know your heart can heal & this is not goodbye forever, only a transition. Don't forget to be kind to yourself by giving permission to cry as often and as much as you need (I believe it helps healing).
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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 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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When my mother was dying, she shut herself off from me. Having worked in hospice, I had learned that some people prefer to be away from the ones they are closest to because it is too painful to say goodbye. My mother died in a four minute window of time when I was not in the room. It was extremely difficult but my mother was a very private person so I understood. I feel that as we are individuals in living so too are we individuals in dying. Perhaps speaking with the social worker or chaplain would be helpful. Or if you are affiliated with a church or synagogue, speaking with your spiritual support. Have you attempted to speak Sith your mother about this? Maybe with hospice support?
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cak2135 Feb 2020
I had talk therapy after my mother died along with griefshare at a church. The one church was not to my liking so I changed to a different church; this one had the counselor bring in her Golden Retriever dog named Buddy so I had a dog to play with (I had a dog and a couple of cats at home.) The talk therapy counselor would come to my home, and one of my cats sat right with her so it was good having my cat in counseling with me. It made counseling go really well
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Eselman1,

She is probably very sad and angry that she is leaving you behind and it makes her hurt. Love is a strange thing - it is a thin line between love and hate. Keep loving her and do it in a special way. Leave flowers and sweet notes expressing your appreciate and let her know that she will always be loved for who she has been in your life. I know it hurts, her transition to death maybe heart wrenching to her, she has to leave you and your dad behind her favorite treasures.

Also, love yourself while she is going through this process.
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Here is a thought, I am not saying this is the reason just a thought. Where was your mom when the topic of going into Hospice came up? Is it possible she feels you and your dad put her there and gave up on her. Is Hospice at home an option? If so try asking her if she wants to come home, if she does and its an option try Hospice at home. We are doing Hospice at home and everything is status quo. A nurse comes in once a week. Twice a week a wonderful caring aide comes in to give mom a bed bath and then gets mom up.
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Familyloss Feb 2020
We did offer this and she rejected so it helped me to feel good about the fact I personally knew I did all I could to help her and I have no regrets or feeling of not doing all I could. She treated us bad but I just held on to fact she was not herself. Trying to hold on to other memories of before and let the end ones go but it’s not easy.
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My Mom pushed me away during her illness. She was trying to be strong for all of us. Medications caused some personality changes to happen. Last days she was remorseful and asked for forgiveness for all her mistakes with me. She cried and I told her that i am who I am because she taught me well. She wanted me to be strong. May be trying to spare you. A therapist may help you cope with her pushing you away.
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Maybe it is just too hard for her to see you in the atmosphere of 'goodbye'. Your other family members may be right. Bless you and the family at this time.
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My cousin was a physician's assistant who made the family decision to put her mom in hospice.

Her mother behaved in the same way towards her and only her. When I asked her why, she said it was because her daughter had put her in hospice and she wanted to die at home.

As others have mentioned, there is at-home hospice care.

At home hospice is more difficult for the surviving family, IMO, but dying people can often be very self-absorbed in their demands, whether or not they have been diagnosed with some type of dementia, and even if they were never self-absorbed prior to their illness.
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It’s horrible and heart breaking. Some how you have to stay in the place of how and where you two had the relationship before she got sick and hold onto that. If she doesn’t have dementia try to tell her how you feel left out unloved as maybe she doesn’t realise. Facing death never easy. Hold on to what you had. It’s a rugged trip. My mother in law turned on myself and her son in last few months before she died after we did everything for her and when other siblings took over and promised not to put in nursing home but did as she was so sick she took it out on us. When spoken to she tried to say sorry but siblings wouldn’t allow her to. She just want herself and although it breaks you keep seeing her as much as you can handle. Maybe take old photos of happy days and bring up
fun memories to see if you can get her talking and even maybe laughing. It’s most awful time but precious. Good luck you need a lot of strength to get you through. Get siblings if you can to try and get her to understand she is hurting you. We were closest to her as we lived closest and she depended on us the most for the last 15 years although she still spoke to others she saw us more and then last months of her life we were treated like outsiders. We still got hugs and allowed to visit but snapped at quite a bit. I hope you can find a way for her to allow you to visit again. I think the family have to rally and say no mum but if that doesn’t work you really don’t want to upset her. Get others to try photos of you and your dad and tsk about you both missing her see if that helps. Gee it’s so hard. Hang onto love you had and try to keep your chin up. Who knows the answer no one really. Hope nothing I said hurts you. I hope you find courage to go on. It’s takes so much energy
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Such a difficult situation for you and for your father. Have you thought about bringing some music she might like to hear from her era? Then you can be present without expecting anything of her and she is freed from having to interact with you or your father. As we age it takes a great deal of energy to engage in conversation, to eat, to breathe.....simply to live. Perhaps your Mom feels she isn't holding up her end when either of you arrive and thus chooses not to have either of you present. My own Mom didn't want me involved in her care but I later learned from her that she was afraid that I would treat her the way that she treated me. Since I was always there for her insuring her best possible state she eventually acknowledged her fear with me and thanked me for all the care I provided either directly or through the process of selecting others to care for her. I would also check if your hospice offers massage. Sometimes touch can be very comforting, moreso than words. In any case this is her journey and she is entitled to make up the rules. Don't take offense.
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I would ask the hospice nurse about this. I believe patients who are at end of life sometimes withdraw and to me it makes sense that the ones she loves most are hardest to part from. She might seek that withdrawal so that she can complete her journey.
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It's often the person closest to the LO or the one who has provided their care that is pushed away by them. And why? Because they are trying to protect them from emotional pain.
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Suetillman Feb 2020
I think so too. She doesn’t want the ones she loves the most to see her dying.
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My husband treated me the same way .He had ALS , but we had a few good years before he had a turn for the worst .He was on hospice, and our daughter moved in temporarily , any time she came into the room he smiled at her .He would hardly look at me , and it hurt so much . A hospice nurse said that happens sometimes , we were married 52 years and I felt so alone .He was always loving and kind before . Being pushed away does not make the loss easier . He dies January the 3rd , and I miss him everyday. I’m so sorry you are having to go through this too .Maybe it’s just easier on her , because of the love she feels for you .The nurse told me it was a way of protecting me , and himself .
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My husband had cancer, diagnosed in Aug 2018, he was gone by December. He would go back and forth, "I don't want anybody to see me like this, don't want our daughters and grandkids to remember me as this frail old man" one day, then "Can you ask the girls when the next time they can come and see ol Pops might be?" I believe the tumor and the radiation were affecting his brain. He was only 60. He went through various phases of confusion and denial, all sorts of things.
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Don't listen to her. Go in and see her. It's hard for her to let go, but tell her you love her, and dad, and thank her. You will see her again. I didn't stay with my mom at the end. I should have spent the nights with her in the hospital, and I did not... I regret that.
I would tell her: Mom, Dad and I love you very much. This is so hard on us. we want to stay with you...
She is having a difficult time with this. Get the Chaplain in so you can talk with her, dad, and chaplain at the same time. She is so scared. She thinks it will be easier if she doesn't see you...It's going to be harder...Just tell her you won't stay long, but bring in music, and things she may like to listen to or watch. Home movies? I don't know, Maybe she doesn't want to think of you two hurting as she does.... Tell her you will sit quietly in the corner of the room, but you need to be there. Tell her it's okay...
I am praying for you. This is hard. At the end, it will be okay. it seems to be...My dad was very noisy when he passed. He was always in my ear. :) And when I did what he "said", I would hear his laugh. When your mom passes, she will give you signs. too. listen and be open to her "voice".
Perhaps be firm with her. Mom I Love You. Don't push us out now when we need to be here the most. If not for you; then for us. She loves you too much. Sometimes, they need to be alone to pass away. I am so sorry... You just don't need to feel guilty about anything. KNOW YOUR MOM LOVES YOU VERY MUCH, BOTH YOU AND DAD... Don't be sad when you see her. Bring in music she likes. and maybe don't say anything.. Let your heart guide you.
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My mother would close her eyes whenever I entered the room and pretend she was asleep. My sister said she thought that mom didn’t want me to see her like this... so in her childlike mind, she could close her eyes and I wouldn’t be able to see her. It was heart wrenching for me, but I still held her hand and talked with her. I know she was aware of my presence.
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eselman1 Feb 2020
I am so sorry because I know that was so painful. My mom does the same, so much so that it almost catches me off guard like in a silly way bc its so out of character for her but I totally agree with you. I am so sorry for your loss and I so appreciate you taking the time to write.
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In my mother's last week she would hold an aids hand but not mine. She had hospice her last few days and I was with her to. I had been there (Assisted living,)along with hospice, about 24 hours and ran home to take a quick bath. She died while I was gone, after reading comments here I understand and don't feel as bad about leaving for few minutes.
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Yes, I am the daughter with POA and the Health care Proxy. She blames me for her confusion and being "put in" assisted living. She does not remember that it was her choice and her wishes. But now that Dad has died, I am the one she wants to know is in control, but at the same time she is telling me to get lost. I find that every day is different. One day she told me I was not her daughter because her daughter Laurie was outside playing! She wanted her little girl again, not me as a fifty something adult. Other days she knows me as an adult and can carry on a reasonable conversation. Yet, through it all she just wants to die and get it over with. She knows that the life she knew and loved is over. She tells me over and over again that she is sorry for causing me pain and complicating my life. She says it is easier to sit alone than see me hurting. My words sometimes just upset her more. I have learned to smile, reassure her and leave with a smile then cry in the car. She is worth the tears any day!
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eselman1....you were on my mind today. Wondering how you and dad are doing?
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eselman1 Feb 2020
You are all so sweet thank you so much. I am new to this group/site and didnt know when someone wrote me back so please forgive me. I am so sorry I didnt personally respond to everyone!( I'm going to try over time) I just now saw all of the messages and they are so articulate and beautiful and I am humbled and crying over all of the love and support from strangers. One of the first responses that I did happen to see totally changed my thinking. It talked about there has to be a separation and that we have to remember, we are all just losing her, but SHE has to deal with losing every single one of US! immediately upon reading that I just cried for hours. my dad, me and my brother and sister, her 8 grandchildren that love her so deeply, all of her friends, everything. She has to say goodbye to everything. How heartbreaking for her! I am so thankful to report to all of you that because of your supportive answers, guidance and experience as well as a book someone just sent to me, I have found comfort and understanding in why my mom hasn't wanted to see me. I also have changed my mindset when I go for visits with her. My new mindset is to go and "be happy" with her, not cry over her anymore. Today I went over and I brought two of my three daughters and we had a little dance party. I had put an Alexa in her room a while ago and today we put on Aretha Franklin one of her favorites and we danced for her. I shifted my thought process to what does she needs not what do I need. Its quite beautiful actually. I started to look at it as a blessing that she didnt want me around. Our love was just so special.
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Glad you are doing the dance party!! That is wonderful.. When my friend's mom and mine were roommates in the board n care, she would call and tell me she brought burgers and milshakes come over so we can eat and dance :)
Then she moved her mom... :( I treasure those days...
Keep the music and the dancing going.. It's good for everyone..
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Eselman1, your mom is dying and your "job" has now shifted from loving daughter to facilitator. Your "job" if you truly love her is to honor her last wishes, whatever they may be. You will have the rest of your life to grieve as her daughter. Right now you have to help make her transition as smooth as possible, even if that means not seeing her. I would still try to be present nearby whenever possible; she might change her mind about you and your dad as the end draws closer and it will be good if you're right there.

Twenty years ago I spent 13 hours a day for 2 weeks at the hospital to be with my terminally ill dad. I left briefly to go walk my dog. The hospice nurse said he died within 5 minutes of my leaving. My mom was with him; the hospice nurse said he probably didn't want me to see him die.

My mom just died 2-6. I was in and out throughout. The night before her helper stayed with her overnight so I could get some sleep in the spare room. At 5 the next morning I went to take over from the helper. I laid next to my mom and told her "I'm here. Go to sleep. Just go to sleep." Four shallow breaths came. I waited for the fifth, and it did not come. That quick. She just waited long enough for me to show up. Very peaceful. So again...please just honor her wishes and you will be at peace however it goes. Best wishes.
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I agree with your loved ones that perhaps it has to do with “closest is hardest”. You become the safest people for her outlet on what she is feeling. Perhaps send a note or card with some else who goes to visit, and tell her how you love her, or just whatever! But don’t make her feel guilty. Just love and pray. That is what we are called to do.
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It does not ease your pain but it may lessen her pain for having to leave you and your dad.
She may be hurting and wants to cause u less pain but it is creating the opposite.
On your next visit just tell her how much you love her again and u want to be there and that though it will be hard, you will be ok and u will help your dad.
U probably have already tried it but keep trying. Talk to the hospice social worker and chaplain for support and maybe they can help u get to the bottom of the issue which will give all involved peace during this very sad and fragile time.
Hugs and prayers love
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eselman1 Mar 2020
This is wonderful thank you so much for taking the time to write me, you are totally right. I have absolutely changed what I do when I go over and I have been saying these things and also just keeping it very light etc. so appreciate your thoughts and kindness thank you again.
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It truly isn’t about rejection. It is usually about privacy. It’s about wanting to spare others of pain. It’s about being ourselves as our individual unique self.

I love my children more than anything else in the world but I am not sure that I would want them to watch me die. Why? Not sure. Why not? Because I don’t know if it would be more than they could handle and I would never want to force it on them or make them feel obligated.

Some people can handle seeing someone die and it has nothing to do with love or lack of love. All I know is that I would always respect a dying person’s wishes and I hope that they would respect mine.

My neighbor once told me that she could never watch her grandpa die. It would break her heart. She wanted to remember him healthy and well. She was very sure that she did not want his death to be her last memory. She chose to remember how he lived.

My neighbor’s grandfather understood that she was unable emotionally to watch him die. He told her mother for her to do as she needed to do and that he loved her and would never ask more of her than she could give.

I realize that you want to see your mom but sometimes it is hard for them for others to be present. We are all different.

I know of too many instances where a person stepped away for just a few moments and when they returned the person had died. I personally don’t feel this is a coincidence. My friend who is a nurse told me that she has witnessed this many times.

Take care. I wish you peace during this difficult period.
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I am sorry your Mother does not want your father or you in the room. It is so hard to understand why someone does something when in distress. When I was reading this it brought back memories of when I was in labor at the hospital, with my first child, 58 years ago. I did not want my husband or anyone to be in the room with me. I did not want him to see me in pain or how I experienced it. It was not because I was angry with him or that I didn't love him. It was because I loved him so very much, I wanted to protect him from my pain. The same could very well be true of your Mother. She is protecting you, dear one.
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eselman1 Mar 2020
thank you so much, this was so kind of you to take the time for the thoughtful response.
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If you don’t remember anything else, please remember this. Your mom absolutely knows that you love her.

My dad died in 2002. He knew without a doubt that I loved him. I fully admit that I was a ‘daddy’s girl’ and I adored my father.

I knew he loved me and he knew I loved him. Yes, we told each other with our words but we showed it with our actions just as you have done with your mom and she with you.

Anyone reading your lovely posting can obviously feel the love from your beautiful words. If we can see it, surely you must know that your mom has no doubt how much you care about her. That is what love is all about, right?

So, I feel there is no need to prove your love. You already have proven it. Your mom certainly doesn’t expect proof, she has certainty of your love. Take this heavy burden off of yourself. She doesn’t want you to be weighed down.
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