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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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KrSo32: It sounds like your mom's pain medications are not sufficient. Her doctors should step in and remedy this. It's not right that she has to be in so much pain. It can be managed better. There are 2 kinds of Hospice. One is paid for by medicare and their guidelines are very specific. Often these are hospice facilities, set up to care for a person in the facility during the end of their life. The patient has to have a prognosis of living less that 6 months. Another option is Volunteer Hospice, who will take on a patient whose doctor will refer them. This Hospice care takes place in your home. Your mom would have no problem qualifying for the volunteer hospice and the 6 month life expectancy is not an issue as they don't take medicare so are not restricted by medicare's tight perimeters. All Hospice organizations are about care and comfort, not about recovery, but I think you would find the volunteer hospice folks more than happy to help you. They recognize that someone like your mom has a very poor prognosis, but that she may want to try more therapy. I don't think they would decline her for that reason. I don't know where you live, but many hospitals have acute care facilities that care for patients like your mom. It's not a nursing home, just an extension of the hospital designed for extended care to help a patient get the care they need during a critical time. You and your dad need your sleep, but you mom needs help with her pain. Your mom no doubt has several doctors at this time. Find the one who will help with her day to day care. Maybe that's her MD or maybe it's her oncologist. There should be a primary doc who is calling the shots here, so put the pressure on him/her to give your mom adequate pain relief meds. Pills may not work, they have their limitations. There are patches that are much more powerful and can give her relief. Don't let her suffer. I feel like the medical profession has let you, your mom, and your dad down. Your mom is very ill and in great pain and the medical folks ought to be helping her and you to resolve that situation. Again, an acute care hospital would be helpful. They could take care of her and address her pain meds, but remember that someone, you and your dad, have to insist that those pain meds are sufficient to give her rest. Your mom needs an advocate now. You and your dad can fill that role and that will make your mom feel loved. God bless you and give you guidance. Stay in touch.
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KrSo32, sometimes it takes courage and a strong will to make decisions to do what is best for your loved one. Can you an your dad sit down and talk about whether an NH would be an improvement for your mother? Not what it would do to your feelings -- relief, guilt, lonliness, scared -- but how it would effect her. Could they manage her pain better in that setting? They could certainly deal with her sleeplessness better, with round-the-clock staff. The person who helps her through the night doesn't have to keep going and help her during the day. Of course you would still spend many hours with her, but it is amazing how much better you can cope when you have adequate sleep. I'm not saying it would definitely be better for her in a professional setting, but I'm suggesting that is the question that should be asked: what would be BEST FOR MOTHER, regardless of what it would do to your feelings. And then, as cmagnum says, perhaps you could get some short-term counselling to help you with your feelings.

Don't even consider "sticking her in a home and be done with it." Consider placing her where she can get professional care, and continuing to love, cherish, visit, and advocate for her wherever she is.

Best wishes to you and your father.
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Krso32, If a person has as many cancers as your mom does, then she does qualify for hospice. She's not expected to live, am I correct? Then call them and get hospice on board. And if someone is telling you that she doesn't qualify then keep rattling cages till someone hears you. I feel terrible for your mom. What would she think if she knew how she was acting towards you and your dad? Oh my gosh, it would probably mortify her. You and your dad are sleep deprived, and that makes a person do and say things they wouldn't normally do. Give yourself a break, and let the guilt go. Life is too short.
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Is she taking something to help her sleep? When pain is bad, it might break through even a strong sedative. But if she is not taking anything, maybe her doctor will prescribe something to help her sleep through the night.

I hope that you can get a clear prognosis soon. I think it will help tremendously in being able to decide which resources you need. If the prognosis is not good, perhaps you can check to see if there is a hospice house available or if they would be willing to go nursing home to help with your mother.

For tonight I just wish you and your father could get a good night's rest. You're not alone in feeling lost about what to do when such bad things happen. All we can do is the best we can do. I am worried about your dad driving to work after getting no sleep. It would be nice if he didn't have to deal with that.

Big hugs to you and your dad. I wish that things could be easier for your mother, father, and you.
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KrSo32, I'm sorry that you have had such a guilty conscience your entire life. What a horrible way to live. You are truly too hard on yourself. None of us, not even your mother is perfect. I'm sure she has made a few mistakes in her lifetime as well. With guilt that heavy, I wish you could afford a therapist for it sure sounds to me like you need one. I'm sure she forgives you when you are short with her and probably realizes that both of you are bone tired while seeking to care for her.

Does your mother qualify for medicaid? I would look into that tomorrow. You can look up medicaid online and find out how to inquire. I also think you need to ask for social services to send a social worker over to evaluate your situations and make some suggestions. Can you find some time when your dad and you can sit down and talk about this or is your relationship strained with him? How old is your mother and father? How long have you been helping your father with your mother?

I hope the results of whatever tests you mentioned come in soon for she might need hospice which will help you and your father also. The possibility is that the brain cancer may have spread to other parts of her body and the cancer in the lungs may be where the brain cancer came from. I don't know, but I do know that cancer can move around in the body. Even with just brain cancer, the prognosis is not good and I don't understand why hospice is not helping her.

It is hearbreaking to watch a parent dying before your very eyes. I wish you the best.
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I've always had a guilty conscience. One of my biggest fears about when my mother passes away is how I'm going to cope with the guilt of having to remember all the times I was ever short with her or didn't treat her right or my patience ran out and I said something I regretted. All I can do is tell myself that she loves me and forgives me all my faults and knows that I love her, too, but it doesn't help much.

My dad has less patience than I do, and I honestly don't know how much longer he's going to be able to do this either. I know he's mentioned a few times about putting her in a home, but that usually gets said after the third or fourth time in the middle of the night picking her up and tensions are running high. I don't know what he really wants.

We also probably couldn't even afford it. But I don't know if there are programs that cover the cost of that or not, or if she would qualify.

I just feel terrible about the whole thing. I hate having to say no when she asks for more pain meds and it's not time, and when she tells me "She just wants to feel loved." when all I'm trying to do is help her.. it breaks my heart.
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I have not read anything that you have done or not done that was morally or legally wrong. Thinking about putting your mother in a nursing home when your dad and yourself can no longer give your mother the 24/7 care as well as actually doing it is not something to feel guilty for. Who instilled this paralyzing guilt button into your soul? Ya'll are in a situation that is over your head. Putting her in a nursing home does not mean that you love her any less. It means you love her enough to get her in a situation where she can be cared for 24/7 and be safe without killing yourself. I don't think your mother would want you and your dad to kill yourself in making sure she is cared for and even more so since as you said she was her best friend which I hear you morning the loss of between the lines of what you are writing and that is both understandable and normal. What does your dad think needs to be done? It sounds like you and he need to have a very serious, heart to heart, completely honest and soul searching conversation. Does her doctor know how things are at home and does he think she needs to be in a nursing home? Do you or your dad have medical and or durable POA for your mother?
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