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The impact of brain injury on a family

The impact of brain injury on a family

This has been the hardest challenge we have ever faced as a family.

On 23rd December 2020, Phil was crossing the road and was hit head-on by a pizza delivery driver. Here, his wife Rachel shares their story.

The accident

After the accident, Phil was taken by ambulance to A&E, where the team spent three hours stabilising him before I was able to see him. When the doctor came to speak to me, all I heard was “massive brain haemorrhage”, “multiple areas of damage to the brain”, and “unlikely to survive” before I ran off to be sick and my legs gave way.

When I finally got to see Phil that night, he looked absolutely perfect: No scratches, no cuts, and no grazes. It was very surreal.

He looked so perfect, yet he was covered in tubes and machines keeping him alive. I spent ten minutes with him, stroking his skin, talking to him and begging him to wake up, before I was told I needed to leave (Covid restrictions were in place at that time).

More details about the accident and Phil’s recovery can be found here.

Telling our son

I arrived home at 3 am. It was now Christmas Eve. Our 4-year-old son Sam was fast asleep in bed, completely unaware. My parents had stayed with him whilst I was at the hospital with Phil’s parents. Sam woke at 4 am for a cuddle, and I somehow managed to get him back to sleep without him knowing what was going on elsewhere. I remember thinking to myself at this point:

I can do this. I have to. For Sam.

He woke properly for the day at 7 am, and I told him about the accident. I will never forget those big blue sleepy eyes looking at me in disbelief as his little mind tried to make sense of my words.

A craniotomy and waking up from his coma

Phil continued to deteriorate over the next few days. The pressure in his brain increased so much that the doctors decided to do a craniotomy, where they removed a section of the skull to accommodate the swelling. Phil’s injury was so severe that he had to have his entire frontal skull removed. I was told that this was a “last resort”.

This surgery turned out to be the best course of action for Phil because after the operation, his brain had room to swell, and he started to stabilise. He remained in a coma for three weeks before he very slowly began to emerge.

Waking up from a coma was painful to observe. He would stare into space, drool on himself, he would growl and snarl at me rather than speak, and could not move his arms and legs in a conscious manner. I knew he recognised me once his eyes opened, as I saw a very subtle brightening of his face when we made eye contact. And I saw some tears build up in his eyes. His brain was so incredibly poorly though, and he would tire easily.

He couldn’t speak at this point and I had to hang on to tiny moments like the tears forming to give me hope that “he was still in there” and that more progress might come.

Phil was in a stage of recovery called “post-traumatic amnesia,” and he was extremely angry, agitated and confused. I’m told this is completely normal, but it was incredibly hard to endure. I can’t imagine what it must have been like for Phil.

He would regularly ring up, shouting at us to come and pick him up, saying he had to go to work/he was going on holiday/asking why I had had him locked up (he had absolutely no sense of reality and did not believe what was happening to him). It was so hard speaking to him.

My dad gave me good advice. He said: “Rachel, Phil must be terrified right now. He needs you to be calm and he needs you to reassure him as much as you can. You can cry your eyes out with us and scream when the phone call ends, but you need to hold it together for Phil during the call”. So that is what I did.

Phil and family on a video call after his craniotomy following brain injury.

Here's Phil about a month after the craniotomy during a video call with his family (no visiting was allowed on the wards because of Covid).

Coming home

Phil initially spent five months in hospital undergoing intensive nursing care and then rehabilitation. During this time, I had two very brief visits to see him, and we had to sit apart the whole time because of Covid restrictions. I just wanted to hold him, but I wasn’t allowed. Phil wasn’t allowed any other visitors, including our son.

Phil had a quick home visit about five months after the accident. It was completely surreal, and I could see how alien our home felt to him. It was the weirdest thing - to see him as a stranger in his own home. A home we had created together and were so happy in. He stayed for a bit and then started crying and asked his staff member “to take him home”. Home to him being the rehab hospital. It honestly broke me, and I wondered how the hell we were going to get him settled at home.

Phil achieved so much in rehab, and on 14th May 2021 he came home again. It was THE BEST day ever. Phil got into our bed for the first time in months. I was very nervous about supporting my husband at home after having had so little contact with him in five months. He felt like a whole new person and one that I didn’t know very well.

His time at home was short-lived, however, as the following day, he had his first tonic-clonic seizure in our bathroom. It was a big one lasting about eight minutes. I heard the thump as he hit his head on the bathroom sink and then the tiled floor. He hadn’t been wearing his safety helmet at the time.

At the time, my son and I truly thought we were watching him die. He returned to Aintree hospital via ambulance, then back to his rehab room, where he remained for another two months, and his side of our bed became once again empty.

Phil’s seizures are a direct result of the brain injury. But I believe that the stress and feeling overwhelmed by returning home was a trigger. He’d had only two very brief home visits beforehand. After a five month stay in hospital, mostly in a room on his own, it was too much. And his fuse blew. His new epilepsy meds were titrated upwards, and I absolutely insisted on a phased return home.

Phil came home permanently on 5th July 2021.

Helping to settle him back at home was possibly the biggest and most unexpected challenge.

When anyone comes home after an ordeal like ours, you're not healed emotionally. There is a part of recovery that can't occur in hospital. And this is what Phil and I focused on for the first year after he was discharged home. We did all the NHS therapies, the assessments, the worksheets, etc.

But recovery is not just about "doing all the things". It's about acceptance, adapting, and learning to live alongside the disability. It’s about love and human connection, patience and gentleness with yourself. It’s about balancing doing "the work" with regular rest. It’s about re-establishing your self-worth in a body that doesn’t quite feel like yours. Building trust in yourself again, being open to all possibilities, getting out in nature and rejoining the community (both our actual community and the brain injury community).

Brain injury is complex. It has affected literally every aspect of Phil’s life and physiology: his physical, social and sexual health, his relationships, his psychological and emotional well-being and his cognition. His cognition was most strongly affected.

Initially, when Phil came home, he would forget a good 90% of what had happened that day. I took lots and lots of photos and would reflect with him at the end of the day what we had done. Phil had significant fatigue and would sleep for hours and hours (we joked that it was “typical Phil” to sleep his brain injury off). The fatigue was very hard and would affect all his other functioning. He had word-finding issues and would still get cross with frustration.

We never ignored it

We embraced the brain injury as much as we could. He has a severe brain injury, it would be futile to try to live as though it wasn’t there. We never ignored it. It became front and centre of our lives initially, affecting every moment of every day. I’m not sure everyone would agree with my approach, but it worked for us. We looked his disability right in the face, chose to work with what we had and set small goals to achieve more.

Cranio reconstruction

After eighteen months, Phil underwent complex and revolutionary cranio-reconstruction surgery.

Phil’s rehab was mostly put on hold during all of this. He wasn’t able to wear his safety helmet as the skin was being stretched, and he had more seizures than usual. Because of this, I needed to be with him 24/7. It was an incredibly tough time for us as a family, and A LOT of staring from strangers when we were out and about.

We (literally) held our heads high, and we carried on as best we could.

It would have been so easy for Phil to hide away at home during all of this, and I’m so proud of him for how he handled the very stressful situation with pride and determination.

Life after brain injury

I'm still caring for Phil full-time. He is doing well in his recovery overall, though we have made many changes to our lifestyle to accommodate his brain injury.

He mostly needs help staying on task with his day. Things like writing his schedule for the day, helping him initiate tasks and see them through. Phil needs help being self-aware and monitoring his emotions and his behaviour. He is more accepting of “feedback” these days, say, if his tone of voice is very abrupt, which he doesn’t notice anymore.

I support Phil with the volunteering that he does now and with his exercise routine. I help him set future goals of what he wants to achieve and then break them down into mini, more achievable goals.

The hardest thing about having a brain injury is that there is absolutely no understanding in general society because it’s a hidden disability. When Phil had an unusual shaped head, it was very obvious that something had happened. Although people would stare, it also meant people were more patient with him. Whilst it’s great that his surgery was so successful now, his disability is completely hidden. And it can be frightening to go out into the world feeling very different but looking the same. This has been the hardest challenge we have ever faced as a family.

Headway helped me to understand

My first encounter with Headway was with Alex the HATS nurse. I have no words for how incredible she was at the scariest time of our life. I rang her sometimes daily and I was always met with compassion and patience. She helped me to understand things better and what might come next.

Most of the health professionals were not wanting to predict further prognosis at any point in Phil’s recovery. I know as a health professional myself we don’t want to give false hope and we certainly don’t want to be met with “but you said...” later down the line. But I am thankful the headway nurses who were willing to put their neck on the line just a little by saying things like “I’m not sure how this will pan out, but I do know that he’s doing these things now because...” and “he needs time to emerge”. It gave me something to hold on to.

Alex continued to support me long into Phil’s recovery, with gentle support and a huge wealth of experience.

We joined our local Headway group (Headway Sefton) and were immediately welcomed. It was the first time in a long time that we felt “normal” somewhere. We didn’t have to explain ourselves or justify whey we do things the way we do….they just “got it” and accepted us for who we were in that moment.

Our advice to others

This has been the hardest challenge we have ever faced as a family. Recovery is slow.

There are setbacks. But with the right help, at the right time, you can live a good life with a brain injury.

One thing that helped was taking each stage of the surgery one step at a time and not looking too far ahead.

I love the saying “keep your head where your feet are” to help us stay focused on the present. And we apply this to Phil’s recovery as a whole now – setting goals and breaking them down into small (sometimes tiny) and realistic steps, and cracking on with them with quiet determination.

"We love you Phil so much and are so proud of how far you have come xxx"

"We love you Phil so much and are so proud of how far you have come xxx"


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