My mum sat rocking back and forth in front of the hospice nurse so uncomfortable that she literally could not sit still but she didn’t say the right words. They didn’t ask the right questions. They didn’t offer the right solutions. No one offered her the procedure that could have drained the fluid from her body. I found out about it by accident, talking to someone else who had a loved one who had gone through this horrible journey. By the time I did my mum was so terrified of going close to a medical facility, for fear that they would take her to a hospital and that she wouldn’t going out of it, so she would not consider it..
My mum’s journey with pancreatic cancer ended far sooner than I wanted and while there were a few good spots with hospice, we had more problems and we didn’t discover the key word until far too late. COMFORTABLE – the person you love needs to tell the hospice staff that they want to be comfortable.
It wasn’t till almost the end after my mum railed against the system that wouldn’t give her the power to control her own ending and the nurse reacted – badly – that I stumbled into the answer. Her, our, social worker happened to show up while the nurse was there. Mum was in horrible pain, and she needed morphine, she needed comfort but the nurse was talking time. In a few days they might be able to get a morphine drip. I was beside myself and that was when I found the answer. My mum had to ask them to be comfortable. It sounds so simple. It seems like it would be self evident. Isn’t that what Hospice is about? Maybe some places that is what it is about. We certainly had a better experience in Florida than we did in California. But she was never really comfortable. I admit some of it could have been my mum. She didn’t like to be loopy and she was terrified of becoming addicted to drugs. We had a few conversations about it and I would tell her if a yea from now our biggest worry was drugs I’d be a happy person.
However, given all of that there was never a real goal that I could see to make her comfortable. I don’t remember them asking about her pain level. It wasn’t till then ending time that we found out that the goal was supposed to be a pain level of a one or two at the most. They never told us that. Not till we found the magic world, comfortable.
If you find yourself in that horrible place, where your loved one is facing that ending, or if you are yourself, take that word, use that word, Comfortable. It will give you comfort. It will save you.
It seems so simple, so obvious.