My MIL has iDiopathic pulmonary fibrosis. She went on hospice 8 weeks ago. She’s been bedridden for 4 weeks now. Her bowel movements are infrequent, she has incontinence. We just bumped her oxygen up to 14liters. She is becoming more and more anxious. She still alert and doesn’t get confused or anything. She doesn’t sleep much during the day either. I think her circulation is slowing down as her hands and feet show signs. She coughs a lot but has taking meds to help. Has anyone here been through this with a loved one & would be willing to share a timeline? What should signs & symptoms should we expect? I’ve found very little information so far. She was given 3 months to live 8 weeks ago.
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I agree, talking with the hospice nurse is a good idea. So far we haven't been able to do that because we keep crossing paths. The nurse, and I am not sure if the same one comes each week, doesn't come on the same day each week. Also MIL's primary caregiver does not ask them questions and has been generally unreceptive and doesn't really want their services! I do believe he is breaking down mentally because of multiple factors-a serious financial issue he's gotten himself into, the day to day task of caring for MIL as well as his own grief & the fact that this is the 2nd spouse he will have lost & had to care for in their final days. He keeps telling me she's declining, 2 weeks ago he said she had mottling but I see no evidence of it. Her oxygen has been increased to 14liters. Yesterday i did not notice any change in her breathing and she is still completely alert and with us cognitively. She's still trying to eat solid food but I think its because her caregiver and one of her kids keeps giving it to her. It took her an hour to eat 1/4 of a piece of corn on the cob! I believe slowed digestion began several weeks ago, 2-3 weeks ago is when her urine output began to decrease and so did her bowel movements. The hospice nurse wanted her take suppositories if she went 3 days without a bowel movement. If her digestive system was shutting down, would they still recommend that?
I guess I am trying to prepare for the worst. She does not want to prolong life, no machines to keep her alive. When I say "the worst", to us the worst would be her being completely alert and with us, but her breathing gets so bad that 20liters oxygen (the max her home machines go up to) is no longer enough and there is no choice but to medicate her with morphine and keep her sleeping until she's no longer with us. I don't think there is any way to know if that will happen though. I have read "gone before my sight" and MIL has had symptoms that occur in different stages of the dying process so it really wasn't of any help.
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With my Mom, who was 98, who had a very strong heart but had serious complications from a head trauma fall, her Hospice Nurse told me 48 hours, and sure enough the Nurse was pretty close on the death time line. My Mom had stopped eating a few days before as her body was starting to shut down.
For my Mom I was with her overnight for two nights. On the last night I was channel surfing in the wee hours after midnight and found my Mom's all time favorite movie "Smokey & the Bandit". Even though my Mom was in a coma state, I had the movie on from the beginning. Five minutes after the movie ended, Mom passed away. I don't know if it was a coincidence or not.