I don't know what to do. I am at my wits end, and I don't know what can be done.

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Hi there.

I am currently living with my parents and acting (with my dad) as a caregiver for my mother who has brain cancer and had lung cancer at one point. She is going downhill very quickly, due to what our oncologist thinks is a delayed reaction to the brain radiation that she was given. She is not the same person, cannot do pretty much anything for herself any more, cannot remember anything, has no sense of time, etc.

She is also extremely weak and in a great deal of pain, so much so that she absolutely refuses to rest. We put her in bed, and two minutes later she is getting up again and wanting more pain meds. Most of the time when she's trying to get out of bed she falls down. Or falls down in the bathroom, and my dad and I have to pick her up. This goes on ALL NIGHT long. Nobody can get any sleep. We are tired, hurting from having to pick her up, and patience is running thin. I don't know how much longer we can deal with this. He has a job he needs to go to, and I can't even look for a job because I have to take care of her. We can't get hospice in here because she's still going through tests and procedures to figure out exactly what's wrong with her, and there is nobody that can help us.

What the heck do you do in this situation? I also have an extreme amount of soul-crushing guilt because I almost want to just stick her in a home and be done with it. I love her to death, she used to be my best friend and I'd do anything for her, but we just can't keep going on like this. All she does is beg for pain meds and fall down, she refuses to rest becasue she says she's in too much pain to rest. Though even when I give her pain meds, she will still barely rest.

I am at my wits end, and I don't know what can be done.

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Document her actions and report to the doctor. It is not uncommon for certain patients to become overstimulated or have an adverse reaction to the pain meds. As stated above, she probably needs a sedative. Also, you should qualify for hospice, those nurses are excellent and would be beneficial for both your mother and yourself. Good luck
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Krso, don't forget to ask about the marijuana pill that will help with appetite as well as pain. My mother absolutely refused to try it when she was dying, so I don't know first hand whether it works well or not. Marijuana also came in the form of a caramel candy that I got my hands on, but she refused to try that either. Man, if I'm dying of cancer someday and eating candy will help, I'd be all over that like white on rice!!
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I am glad to learn that hospice is going to help and maybe you will have more peace with your mom on better pain meds and having more peace as well. I'm glad you are open to counseling or therapy for it sounds like you may have some 'survivor guilt' with the feelings of guilt and shame over thinking about how you are going to feel in the future when she is gone while she is in so much pain now. It is normal to think about how your life will be with her gone. I've thought about how I will feel when my mother dies, some things that I want to do upon learning of her death and how my life will be when she is gone.
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KrSo, I am so glad to read that hospice is coming in. I know it will make it easier on you. I've heard that sometimes when people improve, hospice discharges them. So it not necessarily an "end of the road" choice. That the primary physician and oncologist are on board with the idea says a lot. I hope that your mother does improve, but I know there will be much comfort if hospice can help lessen the pain and help your mother sleep more comfortably.

Caregiving is definitely a one-day-at-a-time thing. I know you are going to need to talk about things that are going on. We're here for you. Often the community has cancer caregiver support groups, too. You might find them very helpful for support and information on things that are available for you.

{{{{KrSo}}}}
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Sometimes the drugs are so addictive that its a real issue. Parents start asking for pain killers like wacked out" users". Its very hard to handle. We had my Mom off the powerful drugs her Dr gave her for years. She badly addicted. Id suggest she might do better elsewhere and see if you can reduce her pic intake too. You want to love her not resent whats happening to her. She might require more than you can give. In turn you will be more at peace with your Mom..
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Well, just as I was finished posting that last comment, my dad told me he had spoken to hospice and made the decision to go ahead with it.

They'll be out sometime later today to get things started. Her primary doctor and her oncologist both think it's a good idea and are on board with it. It's going to be home care for now, and I guess if it's needed we can move her into an in-patient hospice place later on. I just think her being able to lessen the pain and actually rest is going to be a big improvement for all of us.

I think it is for the best, especially with how far she's fallen in such a short time. She shouldn't have to suffer like this.

And I agree that some kind of counseling or therapy might be good for these feelings of guilt and regret that I have, I guess I just get so used to them I don't really think about it being such a negative thing. I just deal with them as best I can and move on. They just keep piling on, it seems, especially when I start to think about how my mother is suffering and I find myself feeling ashamed that I'm worried about how *I* am going to feel when she's gone and how I'm going to deal with all my guilt and regret.
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Hello all, thank you for your advice. :)

The thing with hospice at the moment is, it's been approved by her primary care doctor, but we were told that once you enter someone into hospice, your insurance is usually not willing to cover any further kind of medical testing or procedures, and at the moment we are really still trying to figure out EXACTLY what is wrong with her.

She had lung cancer, had part of her lung taken out, and recovered pretty well from that. Then evidently that cancer spread to her brain. She underwent radiation and seemed to do pretty well from that, everything was looking good. As of two months ago she had a clean PET scan, no cancer anywhere other than the tumor in her brain, and even that had shrunk quite a bit because of the radiation. Her oncologist was extremely happy with her results. And then a few weeks after that she started going downhill. As I mentioned before the oncologist thinks that it's a delayed reaction to the radiation and damaged blood vessels that is causing her confusion and balance issues and weakness. I guess we still don't know where the pain is from. There are spots on her lungs but the lung specialist we took her to thinks that it's probably some kind of fungal infection. I imagine that's not helping matters either.

So it's kind of a balancing act of, do we continue to see specialists and run tests and hold out some small hope that she can turn around or do we get hospice involved and just try to make her comfortable until the end. That's the hardest part for me. We will probably get hospice involved, yes, but I'm not sure when. My dad is calling the Hospice we have lined up today to get their advice and see what can be done, and I'm going to try and get ahold of her doctor today and see what can be done about getting her some better pain meds.

I know there are stronger patches and the hospice had mentioned there are slow-release morphine pills that are supposedly really good for pain, so I'm hoping we can come up with something.

All this would become so much easier if she could just get some relief and spend a good deal of time resting, especially at night.

I hate seeing her suffer like this, and I know how much it's going to haunt me when she's gone. I just want to do the right thing.
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With all the drugs out there, there's no reason someone should be in such pain and unable to sleep constantly. That's unacceptable in this day and age.
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JessieBelle: Thanks for your comment. It touches my heart and I hope my thoughts are helpful. Bless you and all that your are managing.
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cattails, you gave such excellent advice. I wish I could click "like" more than once.
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