The HOSPICE team came today to enroll my mother. The team consisted of two nurses, Olong and Nancy . They were pleasant and carried huge backpacks. When I arrived, everyone was sitting around a small table in my mother’s living room. Nancy and Olong were describing the program and benefits, and explaining what would be different, insurance-wise and medication-wise with Hospice. Apparently all future medications are dispensed through Hospice, which may include some changes. My mother was receptive to the idea but was confused about ‘what would be different’ with “palliative care.” Both nurses were careful to use terms like ‘comfort care’ and ‘stay at home care’ rather than ‘end of life’ care. The team is reachable 24 hours a day and will supply us with an emergency kit to deal with anything that may come up. I asked about falls and bone breaks. The team can even treat that at home without surgery or resetting the bone. Amazing.
The nurses left a pamphlet of emergency, WHAT TO DO’s. From this I learned about some common problems and behaviors at the end of life. Some of the situations mentioned are: constant fidgeting and moaning, complaints of pain, acting cranky and moody, having difficutly breathing, making strange noises while breathing, having a decreased appetite, refusing to eat, experiencing nausea and vomiting, no longer urinating or having bowel movements, anxiety, feeling confused and agitated, feeling restless (and talking about needing to go somewhere, having to leave, and believing someone is waiting for them,) saying hurtful things, hallucinations (!) acting as if in a dream world, acting tired, sleeping more, having difficulty waking up, napping, staying awake all night.
Many of these behaviors mimic dementia, making it all very confusing to know what is going on. Regardless, I think she is in a good place and will be able to stay home no matter what happens.