I didn't know what hospice and palliative care meant until recently. So far my experience left me with mixed feelings. My motheir was diagnosed with inoperable brain tumour last month and was moved from the cancer center where she was receiving the radiation treatment to the short term palliative care and then to the hospice last week.
We didn't have cancer in our family before, so didn't know what glioma was and what to expect. I barely had the time to do some reading before making the decision, and can't say that I had high expectations, but I was hoping that the hospice won't be as bad as the ER and the hospital. Well, so far I think it's about the same: understaffed, everybody tired, nobody cares, no emotional support (actually if anything, it was more emotional distress as they were asking my mom the same questions every day while moving her around - until I asked 5th or 6th person doing the assessment, what's more important to them: that they won't get sued or she doesn't feel depressed when they keep explaining DNR clause to her, every day?)
So I've spent 7 days with her during this final ordeal (not to mention a crazy month before that), and decided to get some rest yesterday as I felt exhausted - both morally and physically. Our wonderful caregiver (whom I hired two weeks prior when I realized that I can't count on the hospital nurses and can't be there every day myself, so need help) went to visit my mom in the afternon - and found her all wet, her clothes soaked in urine. She changed and washed her, but my day off was ruined - and I can't sleep now at 3am, keep thinking what to do... Should I quit my job and hire 24 hour sitters to make sure that my mom's diapers are changed more than twice a day?!
I re-read a few websites, wondering what the words "comfort" and "dignity" that they keep repeating should mean (thinking that if I ever get diagnosed with the terminal illness myself, I'll try to end my life right away - there must be more dignity in suicide than in the so called end-of-life "care"...)