MY STAR ALL BLACK DAD HAD DEMENTIA
Now I do too
As he got older, Alan “Ponty” Reid would share vivid memories of his All Black games and teammates. Known for his diminutive stature at 158cm and weighing 58kg, the halfback captained the 1957 team during its only test series that year, in Australia. But any memories from after his heyday had vanished. Reid was diagnosed with frontotemporal dementia, a term given to a group of conditions that affect the frontal and/or temporal lobes of the brain, at age 56. He died nine years later, in 1994.
Symptoms of the aggressive disease tend to occur earlier than other forms of dementia — generally in the 50s or 60s — and it has a faster rate of decline and a shorter life expectancy.
Now, Reid’s daughter Wendy is battling the same diagnosis, aged 57.
The disease can cause difficulty with motivation, planning and organising, controlling emotions, speaking and understanding language.
As David Seymour’s End of Life Choice Bill heads back into debate on Wednesday, Wendy is angry dementia patients aren’t likely to meet the criteria for voluntary euthanasia. She has been living in Australia for 30 years and had planned to move back to New Zealand if the bill went through.
She has the same type of dementia suffered by former All Black flanker Graham Williams, who also had motor neurone disease, and former wing and National Party MP Tony Steel. Both died last year. The Herald revealed in 2016 that they were among four former All Blacks in the 1967 touring squad to Canada, Britain and France who were known to be suffering, or have suffered, dementia. The others were Mac Herewini, who died five years ago, and Waka Nathan, who lives in a dementia home in Hamilton.
We also revealed the plight of the 1964 Taranaki Ranfurly Shield team, where five players had either died with or were suffering from dementia conditions. Their families attribute their conditions to concussions suffered during their playing days.
Their stories were a continuation of a Herald investigation into the potential links between concussion suffered in rugby and dementia.
Reid’s daughter remembers her father talking about injuries suffered during his playing days, including a broken jaw. She doesn’t know whether there is a link between those and his dementia and it is known that about 40 per cent of people with the disease have a family history of early onset dementia, according to Dementia New Zealand.
New Zealand has about 70,000 people with dementia, a number set to triple by 2050. Between 10 and 15 per cent of those are likely to have frontotemporal dementia, according to Alzheimer’s New Zealand.
With the help of one of Wendy’s closest friends, Wendy spoke to Alanah Eriksen about why she wants the right to die.
It started about 18 months ago. Some things you can put down to old age, we all forget things when we walk into a room. But I would look at an object and not know what I was looking at. Things that were not normal.
So I went and had tests and they diagnosed me with frontotemporal dementia. They said, “You’ve got about two years to live, five if you are lucky”.
My first reaction was, “Oh f***”. But when you know something is wrong, and you spend months not knowing what that is, you are just grateful for an answer. The unknown is worse than the known.
I downscaled work. I run a professional dog-grooming company called The Dog Shed and also trained students for about three weeks at a time. I’ve had to give up the training aspect which has meant loss of income.
I’ve got a fiveacre property south of Perth in Mandurah, and I’ve been selling off big things I don’t need. I’ve got six dogs and three horses. I had 18 dogs before.
You go along on an even keel and then you have a drop, it’s like an overnight drop. Everyone declines, gets old and then dies, but with dementia you go along and have a big drop overnight . . . you plough along until the next drop.
But I’m going to keep showjumping for as long as I can. I’m still doing alright, however I can no longer concentrate on how I ride the course. All my time is spent on remembering the course only. If I have a successful outcome it is only due to experience and luck. I think I have a bit of a reputation for “losing her course again”. Many people on the showjumping circuit don’t know yet that I have a problem.
I suffered a head injury in 2015 from a bad fall off a horse while out competing. I was — and still am hoping a little — that this is the cause of my problem, hence I am hoping it won’t get worse. I’ve had every test available.
I haven’t lost the ability to read, but I don’t remember what I’ve read.
A client will come in and say something, I’ll completely forget what he said. I can’t answer and they can tell something is wrong.
My friend does all the accounting as it’s impossible for me. It’s frustrating. I went and put the mop in the fridge the other day as I thought that’s where it belongs.
I know how to do all the old things I learnt when I was young, like driving, although I get lost. The older and bigger the thing, you remember. I remember things from my early 20s. But it affects everything really. Reading a recipe — that would be tough work. I read the first couple of lines, get to the next lines and then I’ve forgotten the first.
I’ve got lots of good friends around me and a bloke who keeps an eye on me. I don’t like to call him a carer, but that’s what he is. I’m not entitled to government help but the man lives with me here and helps with cooking, cleaning, anything.
I lost my taste and smell through my accident also. It adds another difficulty to everyday living. For some reason I don’t suffer hunger pains, so eating is now a chore which I’m not very good at carrying out. Robert, the carer, nags me on.
I grew up in Morrinsville and moved to Australia when I was about 18 and I’ve been here for 30 years. It was the weather that kept me here. I got into dog-grooming by accident. Mum had a poodle growing up so I used to clip him here and there. Dad gave up the All Blacks when I was born but kept playing for Waikato. He didn’t like to be known as an All Black. I found out he was famous at school. Kids told me and I came home and asked him, “Are you famous?” He said, “A lot of people know me”. I asked him what it was like and he said, “Not very good, people make opinions about you before they know you”. He suffered several injuries and quite a bad head injury where his jaw was broken before half-time. He played the rest of the match with a broken jaw. How, I don’t know.
It’s always been suggested there is a link between his dementia and his injuries, but it’s all speculation, they just don’t know enough about the brain. His injuries happened when he was young and nothing showed up until he was 56. My head injury happened at 56 and dementia showed up a few months later. It is anybody’s guess.
Dad owned a menswear store in Morrinsville. The accountant picked up something was wrong as he was losing money the first year. The next year was such a big loss, the accountant phoned Mum and said, “If he goes into business another year, you will be broke”.
He would sell an item of clothing and not put it through the accounts. Mum and the worker held the store together for a while. Dad stayed at home but he used to get dressed for work at 2 o’clock in the morning.
The disease was relatively new in those days but he knew something was wrong. He had a bit of pride, it’s not something he wanted anyone to know. He was still signing autographs in his later years. One lady kept knitting him a scarf every year.
He still remembered his playing days. When his mind was gone, we’d go into the basement and dig out his old scrapbooks and go through them. He had vivid details of games, who everyone was. He didn’t drink, he didn’t smoke and he was still physically fit. It was just his mind.
He lived in a dementia home in Hamilton in his later years. When he didn’t remember it wasn’t too bad, but when he knew something was missing, that’s when he was suffering.
He lived to 65. Mum lived another 20 years, into her 80s. It was really hard for her. Dad was a strong character and had dignity until the end. I would like to have dignity in the end.
I should imagine he would have liked the right to assisted euthanasia but I can’t answer that for him. I do remember him once saying things are at an end once you lose your mind. I agree as it doesn’t matter how physically fit you might be, without the mind nothing works.
What I envisage as my future, being in a home with no mind, is not what I want. To learn that this new bill may exclude dementia riles me up. Why can’t it be available to me? I still understand the choice between choosing to die or choosing to live. It’s not like you become an idiot. You understand the choice. I understand other people can’t understand that.
While I can still sign a legal document, the law allows me to, I should be able to sign one, even if there needs to be two people who decide “That’s what Wendy wants” when I’m that far gone. You’ve got to get the timing right. It would be for when I really can’t function anymore.
When the day comes and I forget how to ride a horse, I know I’m at the end of the road.
I’d move back to New Zealand for it. I was investigating options in Switzerland but I’m not sure what the rules are there yet. After our conversation, I will get off the phone and I won’t remember anything.
What I envisage as my future, being in a home with no mind, is not what I want. Wendy Reid