I remember crying one night in bed while Finn was still in the hospital. My mum tried to comfort me but all I could think of was that I had lost him. The man lying in the hospital bed wasn’t my husband. He looked like him but it wasn’t him. Finn could only say one word to communicate at that point. “Now”. He just said that over and over again. He couldn’t write either. He thought he was writing a word but it was gibberish. We had to use drawings to help figure out what he needed. Understandably he was angry. He hated being in that hospital. He couldn’t sleep and he wasn’t eating properly. It was so emotionally draining to see him like that.
I visited him every day in Salford for two weeks. I was staying with my mum which is slightly closer to the hospital but that was still a 30 minute journey each way every day with hours spent either trying to communicate with Finn or just sitting by him and watching him rest. The speech therapy was limited as he was kept on the acute ward waiting to be repatriated back to our local stroke centre. So we found apps that we could use to help him try to identify words and we practiced the alphabet or numbers with him. Finn’s aphasia didn’t just affect his ability to say a word it was like he completely lost his vocabulary. The only way I can try to understand how he feels is to imagine that feeling when you can’t think of a particular word and multiply that feeling by a thousand. Extremely frustrating right?
He also couldn’t understand anything we said to him. Whether we spoke it or wrote it down. An example of this is when we finally got a bed on the rehabilitation ward at Stepping Hill Hospital. We packed everything up for him and he was so happy. The nurse and his friends had all told him he was going to stepping hill but he thought he was going home. I repeatedly tried to tell him that wasn’t the case. I tried speaking slowly, writing it down, finding pictures of an ambulance and of stepping hill hospital on my phone to try and communicate it to him. The look of disgust on his face as they put him in the ambulance transport is something I will never forget. He hadn’t understood. Not one word. I was the devil now for letting this happen to him. They closed the ambulance doors and I had to laugh or I would cry.
He was so angry when he got to the rehab ward. Absolutely refusing to stay. Not through words of course but by angrily pointing to the door, standing up, pushing the connect 4 we were playing to the ground He didn’t understand that I couldn’t look after him alone. He needed that support. But he wasn’t going to listen to me so I called for backup. He knew he was in trouble the minute our friend the Matron walked in! You don’t mess with the Matron. Luckily she persuaded him to stay the night but the next day was the same fight all over again. He came to the ward on the Friday but we only managed to get him to stay until the Tuesday. Unfortunately the waiting list for community speech therapy in our area was over six weeks so I had to enlist the help of a private therapist for him to be allowed to leave the hospital. He lacked capacity at that point so it was a decision that had to be made in his best interests for him. He had kept trying to leave in Salford as well but luckily a bad case of gout meant he couldn’t just get up and walk out. I had been asked to consider putting a deprivation of liberty safeguard on him at one point. That was not an easy decision to make at all. In the end I decided that the risk of harm to him if someone tried to stop him leaving was too great balanced against the likelihood of him limping or hopping all the way home from Salford. It seems I made the right decision as although he created a lot of fuss about leaving he never actually tried to make his escape!
What I would like to mention here is the difference between the two wards in terms of the support and therapy available. Both wards were excellent in terms of the care they offered but I really wish he had gotten a rehab bed sooner. On the acute ward therapy is limited but on the rehab ward the Occupational Therapists and Speech Therapists saw him every day. Even over the weekend when you would expect things to stop to an extent. In some respects I wish I could have kept him in there longer but actually bringing him home didn’t have a negative impact. He had therapy twice a week and I practiced with him every day in between. You could see improvements week by week and his mood improved tenfold being home (well at my mums house) rather than in hospital.