Thank you Tian. I have been in contact with a local hospice. I tried to arrange for a representative to come to visit with me and my mom. The woman I spoke with at the hospice was quite happy to come- but the CCAC case manager refused to give us a referral. She said mom had to be 3 months or less away from death....which we believe she is. Her KPS score is too high...based on what the home health care nurse has been relating to her.
Mom has always been very healthy. She doesn't have any existing pre-conditions to complicate her illness. No diabetes, no high blood pressure, good cholesterol...all of which lend to the illusion that she is doing better than her nurse believes. Her eyes have always been a point of weakness in her health, and to learn she has brain cancer has been a shock for all of us - including herself.
Brain cancer can be very different for everyone and very different from other organ cancers as well. Much depends on the site of the tumor(s). When mom started to have diffculty breathing, my concern was that the tumor had spread to the area of her brain that controls breathing. The thrombo doc explained that the tumors are responsible, but because they send messages to the blood to clot, clot, clot. So, there is some relief knowing that the tumor hasn't spread, and that the anti-coagulant treatment seems to be giving her much relief.
Yesterday, she cried a lot and was quite depressed. Now that her terrible pain from the clots is passing, the reality of her impending death is at the front of her mind again. She had such a good weekend with my sister, and her daughters - she made references to how it felt like the old times - before her tumors. She was also frustrated by the fact that her short term memory is fading. So, now she is writing certain things down. I've organized her meds in such a way that she doesn't have to rely solely on her memory. I tried to minimize it by telling her that she remembers all the important things, her family, her friends, her long term memories...and that we can develop other coping mechanisms to compensate for the short term lapses.
Today, we have no medical appointments, in or out of the home - so if she feels up to it, I plan to get her out of the house. I'm bringing my daughter along today, which always makes her happy and helps her to focus on being more positive.
One Day At A Time is my philosophy right now. I'm just so grateful to be free to care for her. I look forward everyday to spending time with her.
Peace and love