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She is mostly confused, extremely agitated, very negative, angry about aging and "being sick", confrontational and though every single person in the family has explained what is happening to her and we are all working hard to make her comfortable, she insists that she is that way because the doctors and her three kids have conspired to put her in a nursing home. We've set up the hospice at her doctors recommendations, we are paying a private duty person to come to her home when hospice is not there, my brother purchased a house with amenities suited to caring for her. They are arranging to move her and her care team to his house. We all work, my sister's home is not user friendly for care and I live 3000 miles away. They take her on outing when she's up to it. I fly in and spend 5-7 days a month with her 24/7. Often just sitting and listening and talking getting minimal sleep because she is so demanding. We've assured her that for as long as it is medically possible we will care for her at home. But none of this sticks in her mind. It's like she is stuck on this loop of negativity and anger. Then at some point at least 5 or 6 times a day she'll say, well (string of cuss words) it's not like I'm dying cause I'm not going anywhere, you all still need my guidance. Or she'll ask who called hospice (I don't think she understands what they are) and when we say her doctor recommended them because the cancer has spread, she'll accuse us of a plot to keep her sick and put her in a home. She is told every day, all day that she is going to her son's house. She rarely sleeps for more than an hour. The rest of the time she is laying in bed going over the same things over and over. Usually starts with she doesn't understand and thus starts the cycle. I'm assuming as the brain cancer spreads her personality will get worse. This last trip she accused me of saying I hated her and didn't care cause I had to fly home to go back to work and be with my daughter and grandchild. I'm just not sure how to address her attitude. It's like she is going to bully death away. Should I agree with her or what? I usually say nothing or try to assure her that we kids will be okay. That just makes her angry and she accuses us of wanting her to die. I realize everyone finds their own path to death as their body changes and declines but I'm a realist. I try to suggest pleasant calming things. Help her to accept equipment that will help but it just sits there while she rages. I'm at a loss for what to say and I find after the 4 th or 5 th round of this I start losing my patience and I'm sure you can hear the irritation in my voice. How do you deal with and what do you say to someone who refuses to go gently into thy goodnight?

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If her rants become too unbearable, try this. Excuse yourself from her room, breathe, tell yourself, "you'll miss her when she's gone, " return and when she starts being negative, just say, "mom, I love you." If she softens, ask her if you can hug her. Then return her mind to a pleasant moment of her life, if she had one, i.e., her childhood. She has a personality that will keep her living for a number of years. She wants to know that she's still needed. You don't want to say, "it's okay if you go, we'll be okay." Wishing you patience and strength. I check on both parents, 85 & 87 daily. They have health challenges so I do appreciate them being with me.
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Just realized that your mom has passed. Cherish your memories of her.
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My thoughts are with you, your siblings and your mom. My mom passed recently after a lengthy illness. Sometimes i would try to distract her by asking questions about her childhood and loved ones who had already passed.
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Kper, God bless you a thousand times, and your mom - there is something to be said for the person who has had such a good life and just wants more life up til the very end! May all those precious memories, from the good times and the tough times, comfort you and your family.
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P.S. Forgot to tell you that the guidance she wanted to provide was as simple as she wanted to remain here to help her children (we're all well grown - 60's). Closer to the end she would say she just wanted to be well again and go shopping and out to eat with us and do crafts and the things we all liked to do together. She wanted to help us when we had problems. She was the one we all talked things through with. That was the guidance she wanted to continue.
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Update from Kper706: Mom was feisty and fought all the way up until the day she passed on October 21st. Her condition continued to decline, we hired medical care to keep her home as long as possible. She continued to claim she wasn't going anywhere but you could see in her eyes and in more lucid moments that she was afraid she was fighting a losing battle. Towards the end she required more care than being in a home environment. Still not wanting her to be in a sterile hospital environment, we moved her into the Western Reserve Hospice facility (Northeast Ohio) which has beautiful surroundings overlooking gardens and the lake. I'd just returned back home (California) shortly before she went to hospice. We kept her apartment just in case she could return home. She was in the facility all of three days. Her last day, my son and my brother were with her and she was consoling them. Funny how the big tough men of the family were the ones crying their eyes out. She let them know she would always be around us but she was tired of fighting. She knew she was very ill and dying, she was scared but she most of all was tired. She slipped into a non-responsive state that evening, breathing heavily and then passed away. The comforting thing about it all is that my daughter, who lives in California with me, was out of the country shooting a video for a fitness DVD and I didn't want to tell her until after the shoot. She sent me a text on October 22nd and said she'd had a dream that her grandmother had passed and that she told her to tell me that she was here with me because I was so sad and crying. She was trying to tell me it was okay and she thought it was funny that she had been so scared to die because it wasn't what she thought. She was having fun (?) and everything was okay. But mostly she didn't want me to be so sad, she was here with me. Yes, I still weep when I think about her message and I miss her terribly. She was an amazingly strong woman who, when listening to those who spoke at her funeral, I was astounded at everyone she'd helped in her lifetime. Thank you everyone for your support and comfort during this extremely difficult time. We are a very small family and death does not happen often for us. Your words of kindness to a stranger and your support have been immeasurable.
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Could you give us an update, kper706?
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Go and sit with one day and hold her hand. Don't say anything that will cause her to argue with you, that is very tiring for her. Just hold her hand, a very small way of encouraging her where she is at, without expecting a reply. All the best.
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Has anyone asked her what guidance she wants to offer? Seems like this very fundamental issue hasn't been addressed seriously. With love and respect, ASK her. Let her get it all out of her system. Take notes. Promise to pass on what she says to whoever is mentioned. Perhaps then she'll be willing to rest.
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I give kudos too! But who knows only God knows when he will take her home and it is her agreement to not die right now. So let her believe what she wants.to. Who knows God God cure her. It can happen
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God bless you and good luck, I don't think there is a good answer for you, I would just try to comfort her best you can and agree with her. If you get angry or frustrated walk away - I would not go over details of her illness with her anymore, she knows and is just not accepting and probably never will. She sounds like a good and strong willed woman as do you, remind her of that often, my prayers are with you.
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My Mom who had Cancer was Linda Blair in the Exorcist she did everything except turn her head 360 degrees before she died. Your Mom does not want to die. What she says don't take it personal. It's not her talking its the Cancer. She knows she will be taking her last breath soon, its horror for her.
Maybe give you some comfort. Maybe comfort for both of you. I know its true I had a similar experience.
I feel compelled to show you this. Probably not appropriate now, but even on Hospice there still is hope. There is more of these and growing every day,
youtube/watch?v=a6iba3sEUIg
bluebird-botanicals/Cannabidiol__CBD__oil.php
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Countrymouse I think she wants you to buy the book, which is why she keeps posting about it. :)
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WTDAM, I think I must be missing something: what is the moral of the story, please? Or do I need to buy the book...
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I think you are doing the loving thing & want to commend you as a loving daughter to visit each month from so far away. I hope others will read this and plan on monthly visits to moms & dads as they will not be here much longer. I am in that generation next to go. Take time for your parents!
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I address this issue starting on p.24 of my book "What to Do about Mama?" under the heading "A Major Decision." With my mother-in-law, it was, "I don't want to miss anything." Her goal was to live to 100.

MIL was on hospice with advanced COPD and a vast range of other related problems. I was her primary caregiver, and took such good care of her that I sometimes felt my health was declining faster than hers. I could no longer care for her safely because my knee would go out on me. It was only a matter of time before I took her down with me in a fall.

We finally just drew a boundary line: I needed bilateral knee replacements and we could no longer provide primary care (after 7 years). This required her to move to her daughter's house. She said, "You're evicting an 89-year old woman." That was tough. She moved, and died a month later, shortly before her 90th birthday.

Barbara M.
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I am so sorrowful for you and your family. I can truly empathize with you guys after having loss my Beloved Mom almost 15 years ago, but it feels like yesterday. I am a Dance & tai-chi instructor teaching youth & senior citizens. No matter the age these students that I teach meditation, and stress management to, they all benefit because I use classical music consistently in my work-shops. Hide the player, keep the music very low as to infiltrate the atmosphere with sounds of instrumental music. The music will lull her mind, and keep her relaxed, night & day. Let her know what a good job she did in raising you children, and that you will always be obedient to her teachings. (No lyrics, just soft instrumental classical sounds). You'll see the difference, she'll feel the difference.
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One thing I'd try (and I have no idea if it would make any kind of dent in her agitation) is when she starts, ask if she'd give you a hug. Try holding her/touching her, stroking her hair, kissing her, letting her hug you.

I know my mom never gets any loving human touch, other then when I help her shower. I wash her back, pat her down with the towel and set her hair. My family has never been a huggy/touchy/kissy family, but I feel strongly that my touching her in these loving ways is helpful to both of us. Particularly with your mom reacting as the lioness who is there to protect her cubs, I would think letting her comfort you for a change might be an interesting dynamic to try. Just try it once and see if it calms her down at all.
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Agree with her and tell her you all still need her and would love for her to live to be 150. Once she knows you still love her and want her around, she will release any "wanting to stay" feelings. What makes you think SHE has any say in the matter? Last time I checked with my higher power, only God makes those decisions. Just let her be who she is until she is gone...
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This is a wonderful site. You've all reinforced some held beliefs and in some cases taught us new insights. You've given me things to think about and I find it heartwarming that there are people who take a moment out of their own struggles and daily life to answer. Yes, mom is a fighter and we were taught that no matter what, ultimately family is what is important in the end. So whatever "tiffs and squabbles" we've had as kids and adults, she would always say, "yes, but that is still your brother (or sister) and no matter what, he will always be that. In the end, that is your only hope, God and family." Despite us all rolling our eyes at the time, it seems we were listening and have taken it to heart when it counts. We know it won't be long for mom. Her weight has dropped to 90 lbs, she can barely stand under her own weight and is confined mostly to bed, except when she wants to sit up on the sofa and watch golf or football. She does have rare lucid moments where she wants to watch TV but those are getting few and far between. She is beginning to sound as if she is losing steam or the strength to fight anymore. We all wish for our loved ones to have that happy ending we hear about where beloved family members who've passed before come back and they somehow calm the person and they go hand in hand smiling into some unseen meadow of unimaginable color and splendor. My mom was the youngest of her family, and I keep peering into corners and doorways hoping to catch a shimmer of somebody...anybody that will make this better for her. (Sad smiles) But we are hanging in there through every heartbreaking moment. When mom passes, this next generation of elders, of which I'm included, is up to bat for living out our senior years. The main thing this has taught me is to have as much pre-arranged as I can understanding that we can never prepare for every situation. Thank you again to everyone and to the site owners for giving me a place for support and to vent.
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I believe it is wonderful that the 'children' are working together. So many have not been blessed with familial teamwork.
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As shared here, your mother’s brain is firing out some of the life adaptations and arsenals she has used to survive and thrive, possibly since her own infanthood. I have just come off a few months of immersion in reading Alice Miller’s books about childhood abuse. My response is a bit hesitant of Miller’s rock-hard single-minded mission – but I think there is a lot of truth to people carrying unconscious torments, which may find unmediated release when brain chemistry changes. When my Mom was dying with Hospice at her home (morphine and other relaxants increasing over time), she went in and out of conscious relaxation (rare), sleep, and rages. With her rages, I would run like a child upstairs in a state of crying, helpless, collapsing childhood. I remember my agony of just wishing she would somehow turn into an angel and acknowledge my love and sacrifices for her before she died. I’d collapse there on the stairs, and weep and knew it wasn’t going to happen. I felt it was like lightening striking me, that my entire life’s relation with her was a lie. Somewhere I read that the rages are not about you, but about Mom’s imaginary terrors projected toward you (or your siblings) which become her targets and blame. Because some accusations have a haunting sense of truth – what conscientious person doesn’t question everything they can about their own thoughts, feelings, behaviors – it is a deep and long road where I found my own personal exhaustion, sleeping next to her with the oxygen pounding between us, crazy insane exhaustion was a mind-altering godsend. Pam must have had a good doctor to prescribe her own medication, but I wasn’t smart enough to ask for that. So I went “altered state” exhaustion too. It will see you through. You and your siblings are absolutely loving people, able to plan together, and I hope will be there for each other if only by phone, during this whole unreal process. What I am worried more about is that after there is a passing, sometimes the trauma of caretaking the dying takes years to recover from. Although you may be numb for a long time, don’t forget that Hospice offers a year of counseling after a death. And grief support groups seem to be everywhere. Hopefully you will take in all the reassurances you have heard here, that you are amazingly loving, devoted and caring. As are your siblings. Reassure your Mom that you are hearing her (even if you don’t agree and it cuts you to the quick). Tell her she is not alone, and you get it. I suspect before too long, even that kind of interchange won’t really work because what comes out is like a tape playing of her random terrors and there is no interpersonal calming. Her rages may even get worse. Turn to others who can confirm a more rational side to existence. And to the powers that have seen you through life this far. Keep her as comfortable as you can, she is in your hands now, or whatever other hands there are we can’t see. Take care, loving thoughts to you and your family.
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With a lump in my throat, I find it touching that in your mother's disordered brain she's still fighting for her kids. She's a tigress. Bless her for that.

But no way round it, I am afraid you have a grim road ahead. If she has metastases in her brain, never mind her mind-altering pain relief, in a way it doesn't matter *what* you have to say to reassure her and soothe her because truth and sanity have become academic. The upside is that you are free, ethically, to tell her anything at all that makes her happy. The downside is that this is incredibly painful for you, especially as a family that, clearly, believes in being open and truthful about illness (which I applaud).

So, too, I don't blame you for feeling angry and frustrated, but honestly? I don't think it'll be for long. And as she seems to be the kind of person who is damned if she'll go quietly, shouldn't you be in her corner? If she's determined to go down fighting, keep on cheering for as long as she can hear you. Help her be brave, but be ready to hug her if she fails.

PS Pam's advice to take the tablets yourself is excellent. You won't be letting your mother down if you get a little chemical assistance to get through this ordeal.
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continuing, think ahead to her eulogy and how much satisfaction you will get from realizing then how much you all did for her and your family's honor.
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I just add my kudos for your family rallying around her and providing such good care....Think ahead to her euu
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Anti anxiety meds and anti depressants, and a sleeping pill are what mthr was on when she was super agitated this way. She is beyond that stage now and no longer needs a sleeping pill. She went 3 weeks without sleep, and that only compounded the tense anxiety she had! Once she slept she was a different person. The other drugs calmed her down.
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Than you all for your answers. As I read more on this site I am comforted (and a little apprehensive about the future) by knowing that we all are experiencing similar situations in caring for our parents and loved ones. I will pass the suggestions on to my brother and sister. It's always difficult when you remember how your mom used to be the one you went to with all your serious situations and now she is the serious situation.
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Hospice will provide the drugs to alleviate her anxiety and anger. Do not be afraid to use them. Two days before my daughter died she said "You are stuck with me". She had no intentions of giving up. So hard for us to know the reality. The Morphine helped her a LOT and later the Haldol. And I had Ativan for myself, too. Might be good for you, as needed.
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Well, I know what I'd say to my mom if she said "I'm not leaving because you still need guidance." I'd say, "Mama, no matter WHERE you are in the universe, you'll always be there to guide me. You're not going anywhere."
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I'm sorry that you and your siblings have to go through this. Hospice is a perfect idea.

As miserable and frustrating as it is for your family to have your mom behave in the way that she's behaving I'm sure it doesn't feel good to her either. Hospice can help with her anxiety and extreme agitation. Medication will calm your mom down and allow her to get some much-needed sleep. Sleeping an hour at a time sounds awful. And I would imagine that when mom's up, everyone's up.
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