Carer Story: Coming Home

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TeNanaWilliamsFamily

By Charmeyne Te Nana-Williams 

I clearly remember the night in October 2002 when Peter collapsed from a subdural haematoma.

He had rung earlier that evening to tell me he had won his boxing match and was New Zealand's Super Heavyweight Boxing Champion!

"I'm so proud of you my darling," I said to him. He said he would phone back later. "I love you" he said, then hung up. It was weird that he hadn't rung back an hour later, but I thought he must be celebrating, so wasn't too concerned. I went about preening myself for his return. I couldn't wait for him to get home!

The night before Peter left for Timaru, where the event was held, I had woken at 3am. Peter's arms were around me, our five month old twin girls were sleeping soundly in the cot they shared next to us, and I thought how blissfully happy I was.

Then, three days later, the phone call. I spoke to the Auckland Boxing Team Manager and I guess it was the way he couldn't say anything to me that said everything. My initial reaction was confusion. Peter was such a strong man. I couldn't imagine what could have happened to result in a life threatening situation. I just had to get there. Thank God for my family. They looked after our girls for three months. I never imagined this would happen to us.

Peter was in the prime of his life, 27 years old. He had been approached about a professional career in boxing, but also wanted to compete at the Olympics. We'd discussed prior to him leaving for Timaru the logistics of living overseas, what our options were, who he could trust in terms of his boxing career. I didn't like boxing and I wasn't really keen on living overseas, but there were opportunities. So many dreams and aspirations were shattered in an instant: our plans for marriage, travel, more children.

Anyway, Timaru. What a debacle! So many emotions, mainly fear and dread. I vividly recall feeling sick to my stomach every morning, Peter waking up from an induced coma and the look in his eyes, not wanting to leave his side, conflict with Peter's family, rumours circulating, media wanting information, a defamatory front page newspaper article saying Peter had sustained his injury in a gang initiation.

What a crock of crap! As if we didn't have enough to deal with.

Trying to find a lawyer to take legal action and meeting John Billington QC - a wonderful man.

Again, thank goodness for my family, for friends, Peter's dad and our girls; they kept me sane. The people in Timaru were lovely and extremely supportive, but we just wanted to get home, back to Auckland, closer to family.

There were no beds available at AucklandHospital, but Paul Holmes had contacted me to ask if we were okay and to offer any assistance. So I rang him to see if he could do anything.

"Leave it to me," he said, and by the next day we were flying back to Auckland in a hospital plane. We were at Auckland Hospital for a month, then transferred to a residential rehabilitation facility. Every time we were transferred somewhere we kind of felt that we were progressing, but there were always new challenges or problems.

It became glaringly obvious early in the piece that my expectation of the provision of care and rehabilitation services was at complete odds with the reality. And so my crusade began - protecting our family togetherness and ensuring Peter received the best possible care. You would think such things are a given, but this was not our experience. How destructive it can be to the healing process when parties don't work together with the key individual's best interests, and their family.

I needed to find a way for Peter to communicate, because everyone else was making decisions for him. I knew he could understand everything that was going on around him. He had that look in his eyes that I had seen only once before. It dawned on me when I had seen that look before, about 18 months after Peter's accident. It was just after we had buried our son, prior to Peter travelling to Timaru.

He was overwhelmed with emotions of love and loss and struggling to express it verbally to me. I remember saying to him "it's okay babe, I know, you don't have to say anything", to which there was a sigh of relief, as he knew I understood.

It was the same now.

We looked for any part of his body that had controlled movement. Peter's prognosis, you see, was that he would be "vegetative" for the remainder of his life, and probably institutionalised.

I don't know whether I've always been like this, but the more someone tells me something can't be done, the more determined I am to prove them wrong.

We discovered that Peter's big toe on his right foot moved well and, more importantly, that he had excellent control over it. Keeping it simple, we devised a method where we would spell together, and finally Peter could tell me what he wanted. What a revelation!

The funny thing is that no one believed me (unbeknown to me at the time) until Peter's uncle died. Peter was given the news, then left to deal with his grief by himself. By the time I arrived he was so distressed, and spelled out what had happened. I was livid that no one had rung me so I could support him. When I confronted staff at the rehabilitation unit they were so surprised that I knew what had happened. Peter's family had told the staff not to tell me, so they were suddenly faced with real evidence that Peter had the ability to not only communicate, but to understand as well. What a terrible feeling to be ignored in such a way! At least they started to take me seriously when I repeated Peter's requests.

The problem now was that people were having problems deciding when I was speaking on behalf of Peter, and when I was speaking on behalf of myself it seemed that it was easier for people to believe that Peter and I were being difficult and demanding rather than be accountable or face a truth. I didn't care though, because it was paramount for me that Peter had a voice and that our family remained intact.

We had many struggles, but a few stand out. Battling a legal process in terms of our property and determining a welfare guardian was "big" and I certainly understand very clearly now why having powers of attorney is so important, along with making legal decisions about relationship property. It was a real issue that many decisions in relation to our future and our property were in the hands of others.

This was due largely to the fact that many did not believe that Peter had the capacity to make his own decisions. We continued to challenge the legal process and now Peter has control over his own welfare, without a court appointed guardian.

We also had challenges working with ACC when planning modifications so Peter could come home. It was a distressing and time consuming situation. But after two years, everything was resolved, and we have since built a wonderful relationship with our ACC Lifetime Rehabilitation Planner, Debbie Watt. Our case manager is a gem as well.

Relationships and communication are definitely key to overcoming some of the bureaucracy when dealing with decision-makers!

Next on the list - "sexuality" (that's what the clinicians call it).

Peter has always been a physical person, so it was no surprise when he started spelling out that he needed a bit of lovin'!

He was still in rehab at the time, so I discreetly went about asking how sex could affect someone with a severe brain injury. I had visions of Peter literally blowing a gasket and me being charged with murder! So off we went after I had completed my research. Then by accident I saw the minutes of a staff meeting, where someone complained that we were having sex!

I was so embarrassed and humiliated (not about the sex but about people discussing our sex life) that I burst into tears. I rang the director of the company, who is a lovely man, and in my distress told him and his General Manager what had happened. He was extremely apologetic and appalled that we had been discussed in such a way, and I guess gave us permission to "carry on". To make it worse, someone from the rehab facility decided to tell Peter's mother. So much for confidentiality!

One thing I've learned is that your private life is certainly not your own in this kind of situation.

Managing a career, earning an income, and maintaining an ordinary family life was another challenge. Looking back, I don't know how I ever managed the routine: wake up a 5am, drive to the rehab unit to see Peter, drive into Auckland to start work at 7 (we live out towards Piha), drive back to the rehab unit at lunchtime, return to work, finish at 3pm, drive home to the girls who were being cared for by a nanny, take them to see their Dad, come home at 4.30 to prepare dinner, feed the girls and get them ready for bed, back to the rehab unit at 7pm, give Peter his dinner and get him settled for bed, back home at about 9.30pm, get everything ready for the next day, clean the house etc and in bed at 10.30/11pm.

It was costing me a fortune in child care, plus managing the separation issues between myself and the girls, myself and Peter, and Peter and the girls was immense. I didn't think that I was in the high income bracket, and although I was financially supporting Peter, he was not considered by bureaucracy to be my dependent. We were not entitled to the invalid's benefit as a couple because Peter was living in the residential unit and not at home ... but he was also not entitled to the sickness benefit because he was in a relationship! Go figure.

The long and the short of it was that rather provide $50 assistance towards child care, Work and Income were more than happy to pay me the DPB, which would give me about $100 less in the hand each week than my ‘high income' job. So I chose the easy option.

During that time I took the opportunity to have a rest, and use my management skills to develop a business proposition which focused directly on the last of my 'big ones': finding a provider to support Peter's care and rehabilitation in our home. In 18 months we had gone through about 100 care workers and two agencies. Neither agency could develop and retain a full team for any length of time that had the skills to support Peter and his injury within a normal family situation.

Also, Peter was physically and verbally abused during this time. His experiences made me even more determined to have Peter at home with us, and to have direct control over the people who support Peter.

Our company took over the contract to manage Peter's care last October. Within three months we had a team of experienced care workers and rehab assistants who I believe deliver an unsurpassed service. Our company is called Whatever It Takes Home Based Rehabilitation Services, and its focus is delivering a quality home based rehabilitation programme that supports the client's and their family's goals.

All of this progress has come at a high personal cost. I become extremely anxious whenever I am away from Peter and the girls. I try to avoid travel as much as possible, but when I do need to spend a night away, it affects me to the point where I feel like I'm having a panic attack. My anxiety is based on fear of something happening to me or my family while we are apart. I especially worry about what would happen to them if something happens to me.

I mainly experience this anxiety on planes. Recently I was staying with a friend in Wellington who is married to an All Black. I was telling them about my fear, and my friend said she experiences this too. She told me a story about how the All Blacks were flying back from overseas, and some of the wives were also on the plane. There was bad turbulence during the flight, and the CEO sitting next to my friend said "surely God wouldn't kill all the All Blacks!"

So now my philosophy is "surely God wouldn't test me any more than he already has; I think I've proved myself!" It's kind of working, by maybe I need counselling for the long-lasting effect.

This same anxiety is behind ensuring that our business succeeds, because if they are financially stable, Peter and the girls will always be fine, and able to afford the care and support they need. I know that our extended family and friends are so there for them if needed ... but everyone has their own lives to lead, and it wouldn't be fair to rely on them.

Since we took over Peter's care he had made significant progress. He has travelled overseas with our family. He is able to stand using a standing frame. Peter has begun to say words, he is eating and drinking orally, he is coaching an outrigger canoe team, he is actively involved in our children's activities, and he is a wonderful husband that contributes to all decisions relating to our family.

Peter is also an inspiration to so many people, and we are able to spend an incredible amount of quality time together as a family. Most importantly, our family is happier than I ever imagined possible despite the challenges we have faced. Peter's disability has not disadvantaged us and we have certainly not allowed it to stop us from having an ordinary life, or doing the things we want to do.

Relationships are defined by the hard times, and that being the case, I am thankful for every experience we have shared. There is no place I would rather be than where I am right now: with my beautiful husband and children, all together in our home, appreciating every second we have together.

Photo: "Te Nana-Williams Family". Terry Winn Caring Moments Collection ©, a project with Carers NZ.

We would like to thank Charmeyne, Peter, and their extended family for sharing their story with us.