These are desperate times for an increasing number of rugby union families, but a businesswoman from New York offers herself as a reference point and champion. As former rugby players and their families come to terms with their diagnoses of neurological conditions, Irene Gottlieb-Old can say she has been there and continues to fight for support – or even just simple recognition of her family’s plight.
Gottlieb-Old met the former New Zealand back-row forward Geoff Old nearly 20 years ago. He and his first wife had split up after the death, aged 16, of their first son when Old was head coach of the Netherlands team that played off against England for a place at the 1999 World Cup. Gottlieb-Old fell in love with Old when their paths crossed on the sport scene in Colorado a few years later. He had been technical director of USA Rugby but he had just stepped away, aware of a decline in his executive functioning – and a concomitant spike in his frustration and, inevitably, aggression.
We might see the Olds as emissaries, a former All Black and his wife sent from the US, where they engage with the concept of chronic traumatic encephalopathy (CTE) somewhat more actively than they used to and more than rugby, newly introduced to the concept, does now. “Sometimes I feel as if we’re from the future,” says Gottlieb-Old with a rueful laugh.
If it is obvious that an elite rugby union player’s risk of developing CTE rocketed from the mid-1990s when the sport became a full-time professional pursuit, it stands to reason there must be some, albeit far fewer, from the amateur era similarly affected. Most might develop symptoms at unremarkable ages of seniority, more in line with those experienced by soccer.
It is now established that soccer has more former players living with dementia than it should have. Does amateur rugby? We don’t know. But only because we have not looked. There ought to be some amateurs presenting with symptoms in mid-life, such as those experienced by the players bringing a lawsuit against rugby’s governing bodies. The Olds think Geoff is one and they have diagnoses from the US to back that up, not to mention the long, lived experience of these past 18 years or so.
“I’ve worked so hard to keep us together, safe and somewhat sane,” says the 62-year-old Gottlieb-Old. “I could just cry through 15 years. Most of that is, we’re grieving our spouse. Slowly. It’s like ripping the Band-Aid off really slow. That’s hard to watch and participate in.”
A recurring theme when discussing dementia in families is a reluctance to go into details, which conceals the extent of a household’s difficulties and makes harder the task of securing a diagnosis and subsequent support. Such is the price of preserving a loved one’s dignity.
Gottlieb-Old hints at familiar daily trials, from the low-level hum of executive tasks that are beyond him, such as using credit cards or paying bills, to the more dangerous outbursts of rage and irrationality. When transmitted through the person of a 6ft 4in former international back-row forward, the development of defence mechanisms is essential.
One of them is to go along with the delusion of the moment. On a recent return to their home of several years in Florida, for example, Gottlieb-Old took a half-hour detour on the way to a hospital appointment of her own, when Geoff raged in the car that she was going the wrong way. Better to go along with it and be late.
The Olds live in New Zealand now. In 2020, in between lockdowns, Gottlieb-Old left her family in the US to take Old home, after nearly 25 years away. They hope to find some support through the country’s Accident Compensation Commission (ACC).
After diagnoses in the US of post-concussion syndrome in 2010, cognitive impairment in 2013, early onset dementia with probable CTE in 2015, and scans revealing age-inappropriate atrophy in his brain in 2015 and 2019, the Olds were taken aback when the ACC medics they saw dismissed all of the above and diagnosed him with depression. One report described the former All Black and stalwart of the Ranfurly Shield and National Provincial Championship-winning Manawatu team of the 70s and 80s as having had a “short spell playing rugby”.
Old went public with his tribulations in 2016, just as the New Zealand Herald ran a feature on former opponents of his, a few years older, from Taranaki, who were suffering from dementia. He claimed their cases were the tip of the iceberg.
During one of the interviews with Gottlieb-Old in New Zealand, Old, now 66, wanders past in the background, before leaning in to the camera for a quick chat. Noticeable is the way he closes his eyes whenever he speaks, as if concentrating furiously.
“They’ve pretty much ignored any issues we’ve raised,” he says of New Zealand Rugby. “From my 20 years in the States, it’s no different than the NFL. They sweep it under the carpet, ignore it. It’s just deny, deny, deny until you die. I can’t wait till they find CTE in the brain of an All Black. Then the shit will hit the fan.”
Old’s may one day be that brain. He has pledged it to a new brain bank at the University of Auckland. Meanwhile, the Auckland University of Technology (AUT) is helping Gottlieb-Old with a vision of her own for a support centre for former players and their families affected by traumatic brain injury.
Gottlieb-Old drew on her experience in business to put together a 25-page, costed proposal for such a centre. New Zealand Rugby (NZR) and AUT showed an interest, but the former threw it out in October last year, when Gottlieb-Old was told in a meeting by a high-ranking officer in the organisation that it was not sustainable. It was a bitter low point for her. “So what do we do now?” she despaired. “I started all this because I need help. We need help. There’s nowhere to go, no one to help us. Where do we go? He told me to call my GP.”
AUT is still interested and has plans, too, for a research centre. A site has been identified in Bruce Pulman Park in the southern reaches of Auckland.
The search for investors continues. Hope is not lost NZR will resume the proposed partnership, especially now Covid is easing and NZR has secured about £100m of investment from the US-based private equity firm Silver Lake. NZR has not responded to a request for comment.
Gottlieb-Old knows only too well the soft value of such rallying points. In 2017, Old spent four weeks with the Eisenhower Center’s After the Impact programme at a retreat in Jacksonville, Florida with former players from the NFL, ice hockey and other sports, all living with the repercussions of repetitive brain injury.
Old emerged on a more even keel, the benefits of shared experience and clinical support of self-evident value, something akin to the Maggie’s Centres in the UK for families affected by cancer. “This is what motivated me,” says Gottlieb-Old, “because this is what saved us. One of us would be dead by now. I swear. That’s what I want to duplicate here because I know it works. And it doesn’t cost that much.”
In the meantime, the benefit Gottlieb-Old has derived from America’s support network of partners and offspring affected by probable CTE she describes, again, as life-saving.
In 2009, she was introduced by Cathy Carpenter, daughter of the former NFL player Lew, to a private Facebook group of about 40 members called CTE Caregivers. Now their membership is nearly 800. Gottlieb-Old recently set up a new group for rugby, which comprises nine partners of former All Blacks with dementia, from Carl Hayman’s generation in their forties up to the generation above Old’s.
“Families are telling these stories that I hear or read about every day. I’m listening and it’s just verbatim, I mean word for word, the experiences I’ve had. I lost my forties and fifties to this. The little I can do to help comfort somebody and say, you know, me too, and maybe he isn’t being mean on purpose.
“We need to help soften it down, because people are walking around angry and getting divorced. And kids are not liking their parents.”
If rugby wants a vision of what the future might hold for some of its players and their families, a businesswoman from New York does not seem an obvious prophet, but she is set on helping not only her husband but any others on their way through treacherously murky waters.
She, at least, is facing up to rugby’s CTE crisis and doing something about it.