What do I say when my Mom (86) on Hospice with spine and brain cancer says I'm not leaving because you kids still need guidance?

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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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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 feel so bad for you, because you can see what lies down the road. Your mother is still in the stage where, even though she has been told death is near, she doesn't accept it as true. Inside her mind she still feels fine, and if things around her would change, then she would be okay.

There will likely come a point that she will realize that death is near. I don't know when that time will be, but you will see the changes when it happens. Some people get more peaceful and accepting. I don't know if everyone does. Maybe others know more about this.

I don't know if there is anything we can do about elder rage other than try to let it go. The thing I found that works best is reassurance that they are cared for. This is easier to say than it is to do. Sometimes we have to walk away for a while to keep our own anger in check.

It sounds like you and your siblings are doing a wonderful job caring for your mother. That is all that you can do. I'm glad you are there for each other.
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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'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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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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You and the family are doing all you can, keep doing so. This is not a fight mom can win. Eventually she will be out of steam and subside. In the meantime I admire her fight. You quoted Dylan Thomas, in response, may I quote Emily Dickinson " Because I could not stop for Death – He kindly stopped for me"
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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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I believe it is wonderful that the 'children' are working together. So many have not been blessed with familial teamwork.
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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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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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