This is my first time posting. I can tell this is a very supportive community. My mom was diagnosed July '07 with SCLC. At the time, it was limited to one lung. She immediately started chemo (4 rounds, can't remember which drugs but I think one was Avastin) followed by radiation (about 34 treatments). She was declared NED in November '07, and docs recommended PCI which she did in January. All good scans until August '08, when she was having dizziness, nausea, etc. MRI showed a tumor in brain stem (cerebellum) which was causing motor problems. Immediately began taking steroid (horrible side effects---swelling, loss of strength in large muscles, esp. legs, etc). She also completed 4 weeks of Intensely Modulated Radiation Therapy (IMRT) to the brain stem to control symptoms and prevent further mets. After last treatment, she ended up in ICU with supraventricletachycardia (racing heart), atrial fibrillation, and extremely low blood pressure. Doctors felt that heart condition probably is from the lung radiation from last year, and did not recommend any corrective procedures or surgeries due to her compromised health from the cancer. She was released to the care of her oncologist, who agreed with my mom that she is too weak for more treatment, and so she advised my mom begin hospice.
My mom is struggling with this and does not want to begin. I think she is scared by what hospice means for her prognosis. I know she and my dad (her primary caregiver) are also concerned about starting hospice care and then having the benefits "run out" (according to their insurance, they only get 4 months of in home hospice care). This is a valid concern on their part, but I am concerned she is not receiving any hospice benefits which could be so valuable right now (for both her and my dad). Also, I am very concerned because she is so depressed, never leaves home, has limited mobility and takes what I consider a high dose of Ativan for anxiety. She is often "loopy" from the meds (I guess it could be from the tumor as well), and while I know it eases her mental pain, it often seems like she is not "all there". Do any of you have experience with this, specifically a patient who is resistant to hospice, and also one who is very dependent on anti-anxiety? I feel that my dilemma is this: I want to be positive, encouraging and hopeful for my mom, but I also want to respect her wishes and the way she chooses to deal with the process. She says things like, "I just want this to be over." And I do not know how to respond. Again, do I encourage her and say, "Don't give up, Mom" or is that pushing her when she feels like she has had enough? I hope this all makes some sense. Thanks in advance for any advice.
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