I too have been trying to find what to expect in the last stages of MDS. Mom diagnosed last Nov after she admitted to ICU w/hemoglobin of 2. They gave her 6 pints of blood, many tests and lots of care and support as she decided to come with me to my home state, chose hospice and looked forward to heaven rather than continual transfusions or chemo. The internist suggested 40-60 days however the oncologist said she may have been living with MDS for years so her organs have adjusted. 8 months in a 24 hr care facility, 3 consistent meals and twice a week visits from me bringing fresh fruits/veggies and cod liver oil. Mid-May her hemoglobin was 4.8 all other blood levels "critical". Today she continues to say she is not in pain, however her kidneys are failing, she is swollen, pale w/dark red splotches on her hands and face (she wears long sleeves/pants so we can't see anything else), weak, mean spirited, short term memory loss/magical thinking, still walking slowly, much fatigue and is completely chilled. She won't allow hospice to take her vital signs. I'm not sure when to introduce her "comfort kit" since she is not bedridden, however she is so tormented and angry. Pretty incredible that she is still walking, talking, eating. I'm at a loss so your situations have been somewhat comforting since I can't seem to find answers. Thank you for taking time to write.