Mom (95) on Hospice care at home for almost ten months. Her oncologist said no more treatment possible. She hasn’t been out of bed for six months. Can’t sit up. Can’t use the toilet. Catheter and pads on the bed. Can wiggle her feet a bit and usually feed herself with right forearm. So bloated with fluid - almost 200 pounds -that one person can’t change her pads and clean her. Skin covered with water blisters that rupture and leak. Two deeppressure ulcers that aren’t going to heal, one started bleeding. Always short of breath. Doesn’t want to sleep at night. Keeps saying she wants to die. Dad wants us to care for her at home until she dies. Three sisters take turns staying for 48 to 72 hour shifts, with one person having to come in to help with toileting.
It seems we are just prolonging suffering with diuretics and low doses of opioids. Dad keeps the TV on at a very loud volume all the time, so no intimate conversations with mom. I think the bedsores and recurrent UTIs seem proof we can’t care for her well enough on our own. She doesn’t want to go inpatient or to NH. Hosparus can’t even find a respite bed until a month from now. POA sis doesn’t think NH staff will be careful enough with her fragile skin and bed changes and wants to keep doing this forever.
If I stop taking a shift, it puts a much worse burden on the sisters. If I keep taking a shift, it enables this lingering death to continue. She keeps rallying and maybe will hang on for months. I don’t want to do it any more. I’m starting to speak up that I don’t want to do this much longer. The others believe surely she will die soon but she keeps fooling us all. I don’t know what is the right thing to do for her.