Navigating the system


The dealing with negotiating with the healthcare system, navigating the healthcare system, was always a something going on. Just before my dad died, he was in the hospital and he was in very bad shape—on oxygen and really not breathing well—and the hospital, I guess, was very short of beds and really needed to empty out as many beds as they could, and so, wanted to send him home. Well, we lived an hour away from the hospital out on a country road. I’m like, “are you mad?” My mom’s blind, I’ve got MS, and I didn’t know who to talk to. I would talk to the nurses, and the nurses would agree with me; he should not be sent anywhere.

But ultimately, they sent him home and he lasted maybe 4 hours before an ambulance was called to take him back to the hospital. And when he got back, within days, [he] slipped into unconsciousness and died a week after that. I didn’t know who to go to to stop this from happening. I knew it was going to be a disaster. He had huge bed sores on him that needed to be treated and the whole situation was ludicrous. But, there was a level of nursing and social work in the hospital that I didn’t know about. I found that kind of thing very frustrating, that nobody, no nurse, no doctor, no social worker, mentioned this magic level— being the person who made that kind of decision to send him home—because I could have talked them out of that. I just could have; I got very good at that. That type of thing I found very frustrating.

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