Transitioning Home After Severe Brain Injury: Nancy Part Ten
Returning to the timeline of our story, we now turn to Nancy’s transitioning home after severe brain injury from Madison.
How long is she at UW Hospital?
Thirty-six days.
So what are the last ten days like in Madison?
The last ten days are better as far as her talking and conversing a little bit. But she still never engaged in anything. They have a craft center there where the kids go and you can do a lot of different crafts. They have a lot of high school and college volunteers come in and she was being tutored by a teacher as well. The teacher said she knew what the words were on the book but she could not go back and remember what the words were. Like the vocabulary words that she needed to know for say history or something, she’d know them if she read them right away and she could repeat them. But there was no, it didn’t seem like there was a recall later on in the lesson when she had to write them down, or try to write. For brain to hand it was, it’s still very difficult for her, from brain to hand to write.
But she’s better at auditory?
Right.
Explain that.
She listens to lectures in class and re-enforces it with terminology in the books and she pretty much has it, she’s done. She can listen to a song two times and she’ll know all the words.
When is it that they start to assess the degree to which she’s actually got brain damage from this accident?
I think that that was when we went to Marshfield Clinic with a follow up with the pediatric neuropsychologist when they started doing all the testing.
After 36 days in Madison, does she come home?
Yes.
And no interim rehab program before transitioning home after severe brain injury ?
When she got home, we started her with outpatient therapy at the facility where I worked.
Any brain injury expert? Any brain injury specialist in that community?
No.
Did they have a feel for what they should be doing?
They work with cognitively impaired people all the time but usually not so much pediatric but more stroke, adult geriatric crowd that’s up there in that area. So they were very good at what they did and I felt very comfortable with what their abilities were.
How often is she going to therapy?
Three times a week.
Now, she’s transitioning home after severe brain injury by the middle of March, beginning of, second week in March?
Yes.
Did she go back to school?
She did not go back to fourth grade. We had a tutor that came to the house and saw her for four hours, three times a week and worked with her.
What’s the homecoming like when she is transitioning home after severe brain injury. You’ve got all this family that was there for her originally, what’s it like when she is transitioning home after severe brain injury from Madison?
Well, the kids at this school had sent a lot of things down there to her, They sent a photo that said Nancy, hope you get better. So she had the photo of her classmates, so we could go through all of their names again and make sure that she knew them. She had a photo of her cousins to go through those names and she also had cards and letters that came, just crazy down there, it was bizarre. We had a stack of mail more than all the other people on the whole floor combined was in her room, it was just wonderful.
But when she got home it was a little difficult for her because she was so fatigued that she couldn’t sleep.
I don’t think she slept the whole time she was at the hospital because I slept in the room with her. It would be 2 o’clock in the morning and I’d look up at the clock and I’d say, are you awake and I’d say, Nancy, are you awake and she would say yes, are you?
It would be all different hours and I really don’t think she slept. And then we talked to the psychologist down in Marshfield, the way he described it was like a whole bunch of white noise coming at her at once, it’s all these reconnections and it’s very hard for her to sleep. Anything that we gave her to try to sleep never knocked her out, never put her out or relaxed her at all.
Did your community rally behind her when she was transitioning home after severe brain injury ?
Right. When she got out of the hospital and we were headed home. All the billboards in town, even though we came home quite late that night. It was after 8:00, 9:00, it was dark. All the billboards and lit up signs said welcome home Maria on all of them. We drove through town on purpose and it’s not our normal route but grandpa had called up and said you really need to go through town.
I’m from Minocqua which is not too far from St. Germaine and they had a great big fundraiser. Oh my gosh. I got there when they told me to and I had Otto and Nancy with me. And they had us positioned where they were in the middle of room where they could be blocked off so no one would bump, inadvertently maybe trip and, you know, or hurt either one of them because Otto had to have his foot up and she really couldn’t do much roaming at that time.
And hundreds and hundreds of people showed up to that benefit, as the same one in St. Germaine they had which was the next weekend. There were hundreds of people that came in. And it was just, you just get the goose bumps. You can’t believe it and you don’t, you know, as far as the, the caregiver you just don’t know how to repay people.
Did she have problems being in that setting though with all those people?
Yes. At that time noise levels, too much going on was like over stimulating for her and she almost got to the point where that was a shut down time. She would act very fatigued. She was having to see people and she didn’t, I don’t think she recognized a lot of people. Or remembered them I should say. So that was uncomfortable for her.
What a great thing the town did by welcoming her home……..