Quote from tolbbk
I am looking for information regarding Creutzfeldt-Jakob disease from anyone who has cared for a hospice patient with this disease. I have my first patient with this disease and want to be able to give her the best care/comfort I can. Can anyone give me an idea of what is coming or complications we may be up against? Supplies/meds it may be good to have on hand?
Any ideas would be appreciated. It seems to be a very fast, progressive path we are on and she is only 37.
Thank you, Leslie. I appreciate your help and advice! I'm afraid this will be a huge challenge for everyone involved.
At this point, there seems to be more anxiety than agitation. Just admitted to hospice less than a week ago, and we have done daily visits since admit d/t pain control and other issues that arise each day. I have a feeling that she doesn't really understand her prognosis, as this has come on so fast. She was walking and functioning in March. Lots of family dynamics too - young family with 7 children.
She can't walk, can't move her legs at all, and screams in pain when someone else moves them. Already getting bilat foot drop. No DTR's in her lower extremities. BUE extemities weak, hands draw up at times. Extreme short term memory loss. Makes total sense when talking to her, but forgets the entire conversation 15 seconds later, so you have the same conversation repeatedly. Very drowsy for the last 2 months (as stated by H&P from hospital stays), even before pain meds started. Totally incontinent B/B. Constant c/o pain complicated by past hx of drug use...
Did your patient have these type of symptoms too?