Join Date: Sep 2007
Location: a state of bliss
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SO sorry you are dealing with this, mama. It is HARD. I'm gonna write a novel, here, please bear with me. Please know, I can't know your scenario, or what is in your heart, and that I mean nothing to cause you pain. But I will write plainly and to the point, because time may be of the essence. I'm not a nurse or doc, but I do work in home health care and hospice.
First, it's okay to cry in front of your mom. In fact, if you do, it will help you deal with whatever is to come. You are right not to overdo it, but don't feel you can never cry in front of her. It will let her know how much you love her. I would have honest talks with her about what she wants. Does she want to fight this thing tooth and nail? If so, you can help her by assisting with research into whether or not treatment typically extends life or doesn't. Treatment designed to cure may extend life, but there also may be a cost, not only financially, but physically and emotionally as well. It is important to remember that the acute care model may not recognize its own limitations, so it is impotrant to get a second or even third opinion. If she finds the cost too high, she may have a better quality of the time she does have with palliative measures such as radiation or chemotherapy designed to alleviate symptoms rather than cure. Now is also the time to talk about hospice care. Hospice may be a wonderful thing for your mom and your family, as they are uniquely equipped to help you all through this process. All hospices are not created equal. Be sure she gets to interview the nurses and case managers to be sure they are a good 'fit' if she decides on hospice care. If she determines that she wants to accept a terminal diagnosis, it is critical that you give her your support and respect her decision.
Here are some things I have found that people with a possibly life ending diagnosis want:
To talk about it on their terms. IOWs, if she wants to discuss it, participate honestly and lovingly. Don't brush off her concerns. But also don't try to force conversations. Th only exception is that she may not want to burden you with her wants. Assure her that it is your honor to care for her as she cared for you.
To have family members understand that this is about the sick person, not others. By the same token, you have the right to take care of yourself, knowing this will make you a better caregiver/advocate.
To be informed that it is perfectly all right to pass away at home or to be in the hospital if that is their wish.
To have their wishes respected in terms of how and where they spend their last weeks and days.
Again, I am so sorry you are having to deal with this. But also know that if you can mindfully attend your mama, listening and being her advocate, no matter what the outcome is, you will have few regrets, and she will have the comfort that no one else can give. :bighug: I hope this helps, and please forgive me any bluntness, I mean only kindness.