Colin's story about his son John

Five years ago, Colin’s son John (not his real name) suffered a brain injury in a high-speed car crash. Here, Colin shares his experience and some tips to help other families dealing with recovery, especially in the early stages after a trauma.

Coping with distance#

We lived in a country town, more than 300 kilometres from the city where John was taken to hospital. That distance was part of the initial shock for us. In the first couple of days we had to pack with no idea what we faced, so we packed open-ended and took more than we thought we would need. That turned out to be wise, because we had to stay in the city for well over a week in that first period.

Accommodation in the city can be tricky for country families. We were fortunate to have a relative nearby and could set up a base straight away.

Look into accommodation support#

We later discovered there was a low-cost accommodation facility just a block from the hospital, set up for exactly our situation: country people with a patient in hospital. No one told us about it; we stumbled across it, and it took a couple of weeks to arrange. We ended up using it for well over four weeks, which was so convenient given how close it was.

So my first suggestion for country families travelling to the city is to ask early about what support is available for relatives who need to stay nearby.

Travelling back and forth#

We also needed to travel regularly between home and the city. I couldn’t guess how many trips we made. I was still working, and my wife Betty was teaching full time, so we were often living apart. My work involved weekends, so I could travel during the week and stay a few days, and Betty would come down by bus and train to spend the weekends with John. We did that for nearly two months.

As seniors we had access to travel vouchers, and people in our community offered to help. Several gave us vouchers they were not going to use, so we received enough to travel back and forth at almost no personal cost.

The early weeks#

Early on, John recognised us but couldn’t talk, because he had a breathing tube in place for the first few weeks. It took nearly a month before he could write anything. Later, with a device that let him cover the tube with a finger, he could make sounds we recognised as communication.

He wasn’t remembering anything#

If we had visited the day before, he had no memory of it. It took nearly a hundred days for his memory to start to return; that is how long his amnesia lasted. He was tested every day to track his movement out of the amnesia stage. For the test he had to recall about twelve things, such as his name, where he was, what had happened, and the date.

His specialist told us amnesia normally clears in about three to four weeks. John’s lasted nearly three months, which showed how severe the impact had been, in two ways: the direct blow to his head, and a long period without normal breathing before oxygen reached his lungs.

It would have been easy to be distressed by all of this, but that would only have passed on to John. So we chose to stay at peace, take each day as it came, and keep a “what new thing will he do tomorrow?” attitude. We were very rarely disappointed.

Support from the scheme#

Our first experience of help from the injury support scheme was with travel and accommodation. They covered the cost of the accommodation facility near the hospital, and allowed a sum for travel. Because Betty and I were using donated vouchers, we weren’t drawing on that fund, so it was agreed that it could pay airfares for John’s younger brother Jake (not his real name), who was living overseas, to come and be with John. He visited again later when Betty and I had a commitment away for a couple of weeks. That was our first generous introduction to the support available.

Returning to work#

Sixteen months after the accident, John began returning to work. I can’t praise his workplace enough; they held his job for him.

Before that, while I’m not sure he was even out of amnesia yet, I was once allowed to take him out of the rehabilitation hospital for an hour. We visited his workplace and they greeted him with open arms, although he couldn’t remember much afterwards. It was only the photos I took that reminded him.

Photos mattered during the amnesia#

We needed photographic records to show him things he had done, because he had no memory of them. The scheme put a return-to-work plan in place, starting with a couple of hours a day and building up gradually to full days and then a full return. During that transition the scheme reimbursed the workplace for the hours John worked, and later for cover when he needed time off for physiotherapy. They were excellent.

New challenges#

We’re grateful the lasting physical damage was mainly to his jaw, which was repaired, and he now has fifteen implant teeth. The harder part was the memory side, and we found John struggled to handle money.

He was being paid into an account we didn’t know about, and he began leaning heavily on alcohol, spending a lot of his money on it. This caused problems at work, as his job involved driving other people’s cars, and he sometimes turned up affected by alcohol. So the scheme arranged a team of carers to spend time with him.

Managing the money#

Early on I had a letter from his doctor authorising me to take responsibility for John’s finances, as he wasn’t in a position to manage them himself. With that authority, the bank set up a separate account he couldn’t access, and his pay, bills and meals are now direct-debited from it.

With no access to cash, we closed off that avenue, though the urge to drink remains and we’re working on long-term strategies. We give John supermarket gift cards that can’t be used for alcohol, cigarettes, or cash withdrawals, so he still has the freedom to shop. After a long bike ride one evening he just felt like an ice cream, and he could go and buy one. That kind of freedom matters. A small amount of cash, on the other hand, he would save up to buy something he shouldn’t.

A morning check-in#

As part of the alcohol concern, the scheme helped set up a check-in alarm. John has to press a button each morning before seven o’clock. We did this because, if he found money and drank, he might not turn up to work, and being far away we wouldn’t know until his boss rang hours later.

One Saturday he forgot to press it, and we got a call from the team at 7:15 am asking if we’d made contact. A quick phone call sorted it out; he’d simply forgotten. At least we learned early that the system worked.

Getting back into shape#

John’s drinking led to a lot of weight gain, partly from stopping for junk food on the way home. The scheme looked at ways to address it, including a twelve-month gym membership. He now goes at least three times a week, which is terrific. They also linked him with an addictions specialist who is helping him with his alcohol use.

Between a portion-controlled meal program, cutting out alcohol, and the gym, he has lost fourteen kilograms.

A team that cares#

John now has a team around him, including a physiotherapist and an occupational therapist, all funded by the scheme. We have three-monthly meetings, and it was in one of these that the psychologist suggested the morning alarm. They put forward a submission to fund it, and it was approved.

We needed it because of where we live; we needed an early sign of when John wasn’t going to make it to work. Our current support coordinator has been wonderful, far more willing to open up avenues of help than we’d had before. They leave no stone unturned, covering the addictions specialist, John’s medication and support through the pharmacy.

The scheme also arranged regular contact through a care organisation, with carers who meet John each day. They meet him at work and go to the gym with him, and since most of them drive, they take him home afterwards.

John has responsibilities at home too. He has to order his meals on the set day, then sort them when they arrive, going through the kitchen and fridge and discarding anything out of date. The carers help him work through that. The occupational therapist is also finding activities to get him out socially.

He had withdrawn early on#

He used to stay home and was, frankly, doing himself harm, but now he’s out and about. He went to a drumming session last week, and he’s joined a ten-pin bowling competition every Wednesday that he thoroughly enjoys, setting himself goals and targets. It gives him another reason to get out of bed, and he’s always loved sport.

We feel supported knowing John has company. We can go away for a weekend or longer, knowing things will be okay. We still ring him every day; there’s always a phone link-up at five minutes to seven, our regular time slot.

The future#

I’m due to be away for around three weeks soon, and we feel we have the freedom to do that now, knowing things are covered at home and we have strategies in place. We want John to have little targets to work towards; it’s important he has things to look forward to.

He’s set himself a goal: at their last six-monthly meeting his specialist told him he needed to lose some weight, and John now says he wants to reach one hundred kilograms, another six or seven kilograms away, before he next sees the surgeon. We’ve got him doing a weekly weigh-in and recording it. It gives us real satisfaction to see John taking this on and wanting to move forward.

Key points#

• Ask early about accommodation and travel support for relatives when a patient is treated far from home.
• Severe brain injury can cause prolonged amnesia; John’s lasted nearly three months rather than the usual few weeks.
• Photographs helped John reconnect with experiences he could not remember.
• Removing access to cash, alongside support and treatment, helped manage his alcohol use.
• A coordinated care team and a daily check-in gave the family confidence and freedom, despite living far away.