Hospice came out to the house yesterday. They stayed for well over an hour. They had us filling out paperwork of all kinds. There were questions that Eric and I realized we shouldn't have to answer at 28 yrs old. Questions we hadn't yet thought about….Funeral homes? Living wills…who pulls the plug? who pulls the plug if #1 plug puller is incapacitated? :) All sorts of crazy questions. Necessary, but crazy to think about. (they even took notes on the dog!!!)
So while here they looked around. Made sure we had running water, heat, air etc. Apparently some people bring in hospice and don't have even the basic necessities. Since Ill be staying home (as long as its possible) they had to check out the conditions they are working in.
I will have a team of people helping me through this. I will have a social worker, nurse, volunteers from hospice, a new team of doctors and a Chaplin. I will meet my team monday. From the sounds of it, I will have people here checking on my status daily.
Now to make sure everyone knows what Hospice is. They only provide palliative care. Its not curative care. They are basically just keeping me pain free and comfortable. They also provide counseling for the family and patient. Even spiritual counseling if the patient desires. They do in home, and if you cannot be cared for in home, they have a facility thats not a hospital that you can stay in. It seems that they cover all bases.
So that is where we are. Walking into uncharted territory for us. We are doing okay, still processing it all. I won't lie tears come at random times, but we are coping. We knew this stage would come. Doctors are still shocked Ive hung on this long. Now we take it a day at a time, and live life to the fullest.
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