It's two days later. Still at the hospital - hopefully today is the day he's going home. He's doing very well. Back to his old self completely. A little wobbly on his feet, but making it down the hall just fine.
The number of people who have come in and out are amazing. Doctors, nurse practitioners, surgeons, trauma team members, PT, OT, trauma PT and OT, neurologists, interns, and the list goes on. In hindsight, I should have made a banner or sign or something that says "I'm hard of hearing, and I have FTD." It became very clear how important it is for me to advocate for him and explain to everyone what FTD is. There was considerable concern about his cognitive abilities. I had to repeatedly explain that today, he is normal. It may not be their normal, but this is how he is. He is as good today as he was last week. Some felt it was important he do inpatient rehab for OT, which would address their concerns about his cognitive abilities. But this fall didn't bring those on. I had to point out that his baseline was lower then most, that this is the way he is - that his brain has atrophied - he can't comprehend a lot - it takes several discussions for him to get the idea. Yadda, yadda, yadda.
Frontotemporal Degeneration is new to so many. I know these folks on this brain floor know about it, but because it is SO different for each person, it is SO important to hear the caregiver out. It is important to speak up and be a part of the team that is assessing the loved one. I can tell this will be something I'll be doing for a long time.
Pause here! Just had another person through here - a really great neurology nurse practitioner who I have been so impressed with. After a reassessment by both PT and OT, we are all in agreement. He's going home! Today! He'll have to be watched 24/7 for a while. He'll have outpatient physical therapy. I've arranged for some family medical leave. We'll take it one day at a time.
Woo hoo! Happy Thanksgiving!
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