The Blue Road to Recovery

Amanze R (2023) The Blue Road to Recovery. Journal of Dementia Care 31(5)18-19.

Ronald Amanze (aka Ronald Ferguson) is writing a book about his life with dementia, with help from David Truswell. Here is an edited extract from Chapter 2: The Blue Road to Recovery.

I want to be honest about my experiences and what I feel. Especially as someone who feels that my heritage has brought me certain consequences which have really impacted on my health. My biggest motive for wanting to write a book is to share my experiences, in the hope it may lead to a training module for social workers and care services, as I invariably feel stigmatised and misunderstood due to outdated and inaccurate assumptions about dementia and my heritage. They so often seem to miss the main theme of what I’m actually trying to address, which is normally about me reaching out for some support and some help. I’m not one to ask for help unless I’m desperate.

I’ve realised that perhaps the book should start at the point where I had the stroke which changed my life. I woke up in Ward 17 of the local hospital, unable to walk, my vision all over the place, with an intense constant pain in my neck and respiratory difficulties. I was still alert and in tune with everything, but just unbelieving that I was still here and still alive. I literally thought I had died. Because when I got the first stroke, before the ambulance arrived to rescue me, I remember I thought I was going to die – only to wake up in the stroke unit alive and becoming a completely different person with new rules to my life. And not even realising that I had new rules to my life, because I was still arguing with the world. Or, should I say, the world was arguing with me.

I ended up falling out with all the doctors in the hospital. It escalated to the matron and the senior hospital personnel coming to meet me. It escalated to patient security being brought onto the ward. It escalated to me almost starting a campaign while in the stroke unit, just to get an MRI scan, and it ended up with my daughter and the rest of the family asking, “Why is Ronald in here, when is he getting an MRI scan?”

I never received closure on that situation. I thought, “I’m in the stroke unit. I must’ve had a stroke because that’s why they brought me here. But they haven’t given me an MRI scan.” And when they did give me a scan, suddenly it was as if all the alarm bells started ringing: “Ronald you’ve had a stroke! You’ve also got a blocked artery in your neck. And if we’d caught it earlier, we could have possibly unblocked it.”

And I’m lying there thinking, “But I had a stroke in front of you in hospital and that was six days ago! Whereas if you had given me an MRI scan like everybody else gets, you would have found the blockage in my artery. Now I have to live with this condition.” And who knows, the reduction of oxygen to my brain might be responsible for the onset of dementia that I’ve got. It might be burning out my brain cells.

All the changes that have occurred in my life still traumatise me. They are things that I keep on referring back to, because I think people should learn that a lot of health issues that people have to live with are because the medical professionals don’t pick up on them. Because mistakes do happen, and mistakes often happen in respect of people of my heritage because we are deemed to be frantic and aggressive. Because I was too frantic, to the extent that they brought in security. Even in my medical report which I’ve got from the hospital.

When you look at my medical reports, one of the comments they made is, “All nurses are instructed to walk in twos when they attend Mr. Ferguson’s bed.” I said, “What!” It’s in my medical report. It’s remarkable. I’m in a stroke unit, I haven’t had an MRI scan and my behaviour is frantic, and no one could work it out other than to say, “Oh no, you’re being aggressive. We’ve got a little room downstairs for people like you.” Then when I came out of hospital, I said let me get my medical report and all the MRI scans and when I read it, to my amazement it said all the staff were instructed, “When attending Mr. Ferguson, always walk in twos.” Remarkable. That’s because I was perceived as being a problem before I got the MRI scan, which they should have given me at the beginning.

After I’d had the MRI scan, the conversation became, “Mr. Ferguson you’ve had a very serious stroke, no wonder you’re feeling those pains, no wonder you’re anxious.” Because now they could see what they had missed, and understand the reason for my behaviour. Because before, when I was in pain, crying out for assistance and no one would give it to me, I was seen as being aggressive. Nobody could understand my behaviour other than to say, “You’re being aggressive and you’re being a problem.” Now on my medical report it said, “You have sustained a very large damage to your brain.” Then I said, “Very large, not large?” They said, “No. Very large.” They kept on looking at me. I think for the damage that was sustained to my brain they couldn’t understand why I was so full of jubilance and enthusiasm. And they said because of the damage I shouldn’t be able to walk straight upright, because theoretically someone who gets the damage like I’d got should be walking differently. And I was walking like that for a long time.

I’d be in my bed and the nurses would say, “Mr. Ferguson stay in your bed and don’t get out,” and as soon as they left the room I’d get up and try to walk. Also, for the first five days they used to bring in people to do the therapy to get people moving. But no one was attending to me. Nobody would come and say, “Let’s get you moving. Mr. Ferguson. Let’s get you out of bed.” They ignored me because they were told, “Ignore Mr. Ferguson, he’s a problem.”

Then after I got an MRI scan, straightaway that afternoon they said, “Come on, we need to get you moving Mr. Ferguson, you’ve had a stroke.” And then they said, “We need to get you on medication.” Then the doctors came, and it was amazing. For a long period of time I thought, “I can’t have had a stroke because I’m not being treated like a stroke patient.” Because all the other people around me were being treated with a lot of attention and people coming and going and attending to them and I was just in my bed all the time. Fortunately, I had visitors. I had a lot of visitors. That all I got. I didn’t get any medical attention.

But once they realised I had had a stroke, I got first class medical attention, more than anybody in the ward. It was crazy. It’s like they discovered they had made a mistake and from then on, I got on with all the nurses; we got on amazingly, to this day. When I had a relapse and I went back into hospital, one of the nurses actually cried to see me again, and she said, “Oh, Mr. Ferguson we’re so sorry to see you back here.” All the nurses became my friends. Amazing, all the nurses who were fighting with me became very sentimental towards me.

In addition to the hospital experience, there was the leaving the hospital experience and a period in which I was not leaving my house; I was not eating, I was not really washing properly. There was definitely no heating in my house. A lot of people tried to get me out of my house, rescue me and no one could do that, and then an amazing social worker came into my life, and she rescued me.

In her report, she says that when they came to see me, they were really worried. They didn’t know what to do and did not know how to get me back on track again. I was missing all my appointments. I refused to go to PIP (Personal Independence Payment) appointments because I wanted to go back to work, and they were telling me I couldn’t, because I had a brain injury. In fact for four years I needed to attend Headway (brain injury association https://www.headway.org.uk ). It was at Headway I first noticed the difficulties which led to various x-rays and memory assessments and a dementia diagnosis.

The social worker’s report shows the tremendous improvement that I’ve made because of this help. The social worker was a lady called Maria Pugh and she’s one of the best people I have met in my life. This social worker saved my life.

Watch a film about Ronald: Amanze – A Portrait of a Pirate by Lucy Hawes

https://www.youtube.com/watch?v=brGWHiEe-S0