One of the things I discovered early is that many health care providers, unless they had a previous relationship with the patient, pretty soon go into an almost automatic response mode. It's another sick person. I don't mean this as disparaging as it sounds. It's just a reality. These wonderful providers work with hundreds of people and take blood pressure or draw blood or start IVs constantly. They literally see hundreds of sick and injured and it is asking the impossible for them to not go into a somewhat automatic treatment mode. That's why everyone needs a family advocate. They need someone to bring donuts to the nurses station (best advise you ever gave me LB).
Marty had always been incredibly gregarious; befriending servers, clerks and medical personnel everywhere. She was quick witted and funny and more often than not would make great friends with everyone, including the clerks at our local convenience store. She would have known to bring sweets.
I wanted to be that person for Marty. I wanted to make her a very real person to all of her care providers. I tried to become Marty's voice in all of the hospitals and medical facilities we visited. I really wanted people to know more about my wife than she was a very young stroke patient. I wanted the care providers to see her as the very interesting, bright, talented person she had been. I still want that. I still want people to know who Marty was before she got sick.
I told everyone how smart Marty was. I told them about her education, about being a Speech Pathologist and a practicing Psychologist. I told them about her work with academic physicians and her friendships with and her understandings of the difficulties in the health care industry. I told them about our children and how important they were to Marty. I told them about how musically talented she was, that she could play multiple musical instruments and how much she loved music. I told them about Marty's parents, Arty and Jean, and how her father at one time had been a meat packer so don't be surprised at what Marty might say, because she can cuss.
While I learned about Marty's medical problems and a lot of what all of this meant to us as a family I made it my priority, my job to let people know her. Everyone needs this. We all need to be able to attach a real, human face to others. In order to do this you have to know some of the personal stuff about them, not just see them naked. (You can quote me on this). In doing this I made a lot of friends, people who genuinely wanted to know more about this rather fascinating patient. It was amazing seeing how this really sick woman could still touch so many lives.
It's really important that sick people have the kind of support Marty has received; from her family, her friends and care providers. Nurses, doctors, therapists just simply don't have the band-width to do it all, the rest must fall to the people who love you. Marty is lucky in that sense. She raised and taught her family, including me, that you must stand by your family in the worst situations. She was right.