4. Feeling human

“Once things felt familiar, I felt more comfortable.”

“Even once I was physically mobile, I had to wait for a nurse to take me to the toilet and to shower. I often had no idea how long I would have to wait. Getting onto the toilet wasn’t so bad, but sometimes I think they forgot to come back and get me off – I was stuck on there”

“I was humiliated — after my shower (hosing down) I was left standing naked in the bathroom with the door open for all to see while the nurse went to find a wheelchair.”

“I got used to the schedule eventually, but feeling like I would be late because the nurse hadn’t come to help me shower yet made me incredibly anxious.”

“If I couldn’t reach my call bell, I had no way of communicating anything at all.”

“The sense of solidarity with other Stroke Survivors was also really important for me. The social networks became like my chosen family.”

Ashleigh: One of the hardest things I’m discovering about rehab is having to re-learn all these basic things that you’ve done your whole life. It’s so frustrating that I need help to go to the toilet, to take a shower, and even to move a couple of metres. I feel like I lost a lot of dignity when I ended up in hospital after my stroke, but now that I’m on the rehab ward, I do feel a bit more human. It’s the little touches like the staff all using my correct pronouns, the furniture looking like it belongs in someone’s home rather than a hospital, having a real quilt on my bed, and things from home in my room, and the improvement in privacy [6, 11, 13]. I remember when I was first in hospital that there was a bit of an attitude of “everyone has seen everything” so your privacy was the least of their concern. But here, even when I’m being helped to go to the toilet, I don’t feel like the whole world is watching. Sometimes I do get stuck on the toilet for a while because the nurse who was helping me had something urgent they needed to attend to, but I don’t need to worry about someone walking in on me. And, if it seems to be taking a while for them to get back, I can see (track) what they’re doing and know they haven’t forgotten about me [2, 13, 14].

It was nice this morning to not feel like I’m “on the conveyor belt” when it comes to the morning routine. Everything seems to be about supporting me and helping me to begin to live as independently as possible rather than feeling like I’m just the next person in a long line of people to be showered [4, 13]. I also liked being able to check in to see how long it was going to be before a nurse was able to come and help me shower this morning. I was feeling a bit nervous that I was going to miss my first therapy session, but the [tech] ensured everyone adjusted our plans to make sure I didn’t miss out on anything [2, 4, 14, 18].

Jeane: After a few weeks of rehab, I started to use the iWall to open channel with my kids up in Sydney. Being able to watch TV together felt so normal, even though we weren’t in the same room. I think they only ever saw me on an iPad next to the TV, but my iWall seemed to disappear and it really felt like they were in the room with me [2]. We also used this for some of our peer support groups. I really liked being able to keep in touch with people for a little while after they left rehab because they really got what I was going through. I also liked the online chat and message board spaces that were facilitated by the Stroke Foundation [2, 3, 9]. Sometimes having the chance to ask questions anonymously was really valuable, especially when it was about something I find really embarrassing [7]. A friend I volunteer with had the opportunity to try out some of the VR technology the staff use in their empathy training. They said it was really interesting to feel what it’s like to not be able to pick things up, and to not be able to hear what people are saying properly [2, 14].