A fate worse than death
We’d joked about my hubby’s clumsiness, but the truth wasn’t funny at all
Spanish music blared from the speakers as my husband Dale, then 36, sauntered over. It was July 2014 and we were baking in 35C heat in Tenerife.
I’d sent Dale to the bar to get me and our son Callum, then 10, a cold drink while we lounged by the hotel pool.
But, almost in time to the music, Dale’s arms suddenly started jerking.
‘Dad’s doing the Macarena!’ Callum laughed.
‘Oops!’ Dale grimaced as he lurched towards us, our drinks spilling everywhere.
‘I can’t take you anywhere,’ I teased.
Poor Dale, he was so clumsy.
We made a joke of it, but he was forever dropping things, tripping over on the stairs.
Constantly coming back from his delivery-driver job covered in bruises.
‘Trust you,’ I’d sigh, fetching an ice pack.
Only, when we got home from Tenerife, Dale seemed to get worse.
Handing him a piping-hot cuppa one day, instead of grabbing the handle, the mug just slipped through his fingers.
‘Sorry!’ he gasped as it spilled over the carpet.
Over time, I noticed his shoulders flinching, his mouth twitching.
He was such a fidget in bed at night, too.
Then, one day in December 2018, he came home from work with purple bruises down his leg.
‘I fell out of the van again,’ he groaned to me.
‘You should get them seen to,’ I urged.
Only, his doctor sent him for blood tests.
Weeks later, Dale called me while I was at my retail job.
‘They think it’s motor neurone disease,’ he said, his voice trembling.
‘They must’ve made a mistake,’ I gasped, thoughts racing through my mind.
I knew MND was a terrible illness that left people unable to walk and talk.
I couldn’t bear the thought – despite his clumsiness, Dale had always been so strong and independent.
We had to wait months to see a neurologist, and we spent hours researching the condition.
Finally, in September 2019, a consultant at Leicester General Hospital confirmed that it wasn’t motor neurone disease.
However, our relief was only short-lived.
‘Dale has Huntington’s disease,’ he said.
It’s a genetic degenerative condition that slowly shuts down the brain, affecting your ability to control your own body. It couldn’t be treated or cured.
Over time, Dale would deteriorate mentally and physically, and he’d become severely disabled.
We’d lose him bit by bit. It felt like a fate worse than death. Our whole future had been ripped away from us in an instant.
‘Patients usually have around 15 years from the time they first see symptoms,’ the consultant continued.
Stumbling, clumsiness, jerking movements and fidgeting were some of the main signs.
I thought back to that holiday five years earlier.
The way Dale had thrown
He was forever dropping things and tripping over
his elbows out suddenly, almost dropping the drinks.
It’d seemed so funny at the time.
Was that the start?
But worse was to come. We were told the condition is hereditary.
‘Callum!’ I gasped.
Our lad had a 50/50 chance of one day developing the condition.
‘It’s all my fault!’ wept Dale, overwhelmed with terrible guilt.
‘Of course it isn’t,’ I reassured him soothingly.
I’d spent months worrying about becoming Dale’s carer, watching him deteriorate day by day.
Only, now, there was a chance I’d see the same thing happen to my son, too.
Suddenly, the future felt absolutely terrifying.
That week, we sat Callum down and told him everything.
‘Legally, you can’t get tested until you’re 18 years old,’ I explained to him.
‘I don’t want a test,’ Callum, then 16, insisted. ‘We need to think about what we can do for Dad.’
I’d never been more proud of our selfless, mature boy.
There was no treatment, so Callum didn’t think there was any benefit in him knowing for himself.
‘Dad didn’t know most of his life, so I don’t want to, either,’ he said.
I desperately hoped he’d change his mind one day, but Callum was right. In the meantime, we needed to focus on Dale.
While there was no proven treatment, Dale began taking meds to reduce the involuntary movements.
Not wanting to feel so helpless, we started eating healthily, getting regular exercise.
Determined to make the most of the time we had left, we booked trips abroad, to Florida and the Dominican Republic.
But Dale’s symptoms quickly became more pronounced. Slurred speech, swaying when he walked, memory loss...
‘Why did I come in here?’ he’d frown, standing in the kitchen, confused.
His job became too much, so he quit – and, easily overwhelmed, he struggled to keep up with conversations.
‘Slow down,’ he’d beg us as
Callum and I nattered at the dinner table.
As well as caring for Dale, I’d watch Callum like a hawk. Playing football in the garden, even just watching the TV.
Does he look unsteady on his feet? Did his leg just twitch..?
Sometimes it felt like a ticking time bomb that I couldn’t escape.
I tortured myself constantly with worries.
Now, I’m trying to focus more on the here and now.
Enjoying walks together and family time while we still can.
I work part-time so I can keep an eye on Dale.
Sometimes, I’ll return home in the afternoon to find he’s left the cooker on or cut himself by accident.
I know one day he won’t just need help with cooking.
I’ll be his full-time carer, helping him to wash, dress and eat.
People tell you to look for the positives, but sometimes that can be easier said than done.
I’m not just facing losing my husband, but my son could be living with a death sentence, too.
Callum will turn 18 this May, and I’m hoping that he’ll have a test.
But he’s scared – of course,we all are.
Every day, Dale and I pray that Callum doesn’t have Huntington’s, desperately want him to have a long, healthy life.
We want our son to have the chance to get married, have children, travel. All the things that Dale and I have been so lucky to do. In the meantime, we’re enjoying the time that we have left together.
Making precious memories as a family.
Vicky and Callum are raising money for home modifications to keep Dale at home as long as possible. To help, visit gf.me/u/wqspum
It felt like a ticking time bomb I couldn’t escape