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.
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}}}}
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.
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.
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.
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.
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.
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.