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Dan’s Story part 2 ‘A Parents’ Perspective on Community Neurorehabilitation’

Dan's Family Discussing Community Neurorehabilitation

This post shares the emotional continuation of Dan’s Story, portraying his parent’s journey through community neurorehabilitation and the road of returning to normalcy after a loved one’s brain injury. If you want to catch up on the first part of Dan’s story, click here.

How did it feel for for the both of you as parents to be able to get Dan home after being so long in hospital?

Darren (Dan’s Dad): Well, that was the aim as soon as he went in. What do we need to do to get him home?

Emma (Dan’s Mum): I took him fresh clothes in the day after he had an accident. I remember the nurse looking at me bringing in T shirts and pyjama bottoms. She said “He’s not going to be needing any of those for quite some time”. They were incredible at breaking that to us both gently and quite firmly how long he was going to be in there. Only after about a month, did we realise exactly how long he was going to be in there for.

Darren: When we spoke to our consultant, he was the one that laid the facts out. At that point, the stage that Daniel is at now, I envisaged being at in two, three years time. I thought everything was going to take a lot longer, but he did really well. Obviously, everybody’s going to be different, but it was a massive head trauma. We were thinking he’s going to come out of a coma like they do in the movies. So to see him take two weeks to come out of a coma you don’t expect.

Things were hard, but everything just seemed to fall into place after he came out of the coma. Then a place became available at Snowdon in Southampton and then in two weeks he’s in de-neuro and then he’s off to Snowdon. Then eight weeks later, we all walked out together and had our photograph sessions together and it was home from there.

Emma: We had no idea what he was going to be able to do or not. I look back to the first night he was in hospital and and it was breath by breath. We then went to minute by minute before we then learned we could live hour by hour and then eventually day by day. You get to the point where he’s been in a coma for four weeks. You’re asking the folk on ICU “What are we going to get back of him?” And, of course, they told us very sweetly that nobody knows that yet. It wasn’t until he was more awake that we could find out. Every day was a milestone in terms of him being a day closer to being awake, to walking again and then back at home.

To be here at seven and a half months, and for Dan to be going back to work, and for the amount of time and energy that every single one of those staff has poured into him is amazing. They’re very kind and dedicated, and we’re so grateful.

Darren: We’ve been very lucky for the treatment he’s had right from the very beginning. Everybody’s been so helpful and informative. Right from OCU they made sure that they gave us all the information. Any new bit of information was relayed to us straightaway. And now we have the Occupational Therapist giving us updates on how he’s moving forward.

Emma: Every week we get a report from our therapy team, saying exactly how far he’s progressed, the things he’s learned, the things he’s taken on board and it’s helping us see the changes. Because from him going from being in a coma, to walking, or eating, all of those things were massive and the changes now much more subtle.

Having people log the changes with his community neurorehabilitation and remind us of what those changes are is so important, because he’s come a huge distance from where he was when he left Snowdon. Whereas we wouldn’t necessarily see that. All of a sudden, it becomes your new normal having him living at home. We went through phases of thinking we’re going to have to put him in a room downstairs, because he wouldn’t be able to walk, to adapting toilets and shower rooms, and all sorts of things and preparing to live a very different life.

Darren: It’s made me aware of what the brain has to do.  Just crossing the road; the amount of input that is coming into your brain is massive.

Emma: What has been fascinating through the process of recovery, has been that the support we needed was mostly in the first eight weeks. But he was unaware of that. The relationships he’s built has been very much with the Snowdon and the Peartree Community Therapy team. All of the legends as he calls them that he’s had working with him at Snowdon and Peartree. They’ve been his part of the journey. And that’s been really important. Whereas for us, it was the people who were holding our hands literally and hugging us during the really early stages.

Darren: But then I get on really well with the Peartree Community Therapy team, like Emma the Occupational Therapist, because I feel like I’m involved in it as well. Now he’s home, where we’ve got Peartree coming here to do neurological rehabilitation like the OT and Shannon, his Rehabilitation Assistant, and I get to be here in the background.

What would you say to other parents who may have a daughter or a son with a brain injury going through this neurorehabilitation journey?

Emma: Get involved, because I think there was a real benefit to get involved with therapists, the staff who are working with Dan, and ask the question, “What can I do to help?”, because they only have limited resources.

When the team would say, “what we’re trying to do today is this activity to help with memory strategies”, we could also incorporate things like playing with packs of cards. Before we knew it, he could play blackjack, but then after three hands, he would get cognitively fatigued, which we could see because he couldn’t count the cards anymore. He couldn’t score anymore. It certainly helped us, it helped Dan, and it helped the therapists who only have a finite amount of time that they can spend.

It’s important for parents or family members of someone that’s had a brain injury to ask the questions and learn how they can help with the neurorehabilitation, especially in the community. Understanding about the brain and how it works and how his brain injury was affecting who he was in that moment, was so important. It’s really important to learn and find out how to get involved and how you can help.

Darren: It’s very much a team thing. Even taking in food when he wasn’t really eating that much, I would always look towards the little goals every now and then and all the little things that he did. All the little steps were a great triumph. I just think with everybody with us and it’s been really good.

Would you recommend Peartree Community Service to other people?

Dan: I definitely would. I can see the difference that it has made. The therapy has brought me so far, while at the same time being able to do some fun things that I enjoy.

Darren: Dan would not be at this stage now if he had just left Snowdon and come home.

Emma: I don’t know where he would be if he hadn’t had that. They’ve made him who he is now. And he’s still Dan, but as he said, almost a better version. He’s a lot more proactive at home than he’s ever been.

Darren: He’s a lot more organised and the strategies are working. It’s incredible. I would hope everybody was as lucky as Dan to get this sort of treatment. Because it makes a massive difference.

Dan: I can stick to things a lot better as well. Since coming out of the hospital I go to the gym three or four times a week. And because of all the therapy I stuck to it and I don’t forget. And I want to stick to it so much because I’m really enjoying it.

Darren: Some of the changes that they’ve implemented will be with him for the rest of his life. To get him to the stage where he’s at now would have taken us a couple of years probably would have been a long way round.

Emma: Part of that’s come from a life changing experience, but part of it is what the scaffolding that they’ve put around him. It describes it perfectly. It’s been incredible.

Dan is desperate in some ways to forget what’s happened to him. And when therapy comes to an end, he can actually start to put the accident behind him. But without what he’s had up until now, I think he would still be struggling with what we consider normal daily activities. In terms of thinking about what’s happening tomorrow, making sure he’s got enough time to do this, that and the other.  And the concept of going travelling and going to university would perhaps be at least another year or two away if he hadn’t had the input that he’s had.

Things like the multi errand tests; the beginning of Snowdon where he was taught to make egg on toast. It was about him being able to divert his attention to make sure the toast didn’t burn and that the eggs cooked and all of those things. And we were going wow, we have no idea that crossing a road safely was so cognitively demanding until they taught us about that.

And then crossing a road whilst being interrupted and distracted and then crossing the road. It has been fascinating. The thing I would say is for any parent is it is like watching when your child is born through to when they’re about five. Watching the miracles happen during this seven and a half months has been like watching him go from nought to five, being taught to read and write, that amazing feeling you get when you see your child read and write for the first time. It’s been that but condensed into seven and a half months. And that’s something to behold.

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