31 Jul 2015 at 11:08AM
Category: Your Stories
Jen has been forced to create a whole new life for herself. But in an exclusive interview with BrainLink, she says it’s come at a huge social cost. These days, she often feels invisible.
Sometimes it isn’t the loss of dreams and aspirations that Jen finds it hardest to deal with, but the feeling she’s being forgotten.
In the process of “keeping my head above water” while caring for her husband who suffered a cardiac arrest and a stroke on the same day ten years ago, she’s begun to feel invisible.
“Slowly but surely you’re not out in the social world, so people forget you,” she says.
“You don’t get invited out for dinner, you don’t get invited to weddings, because he’s different.
“Your whole world has changed. It’s really something that people do not understand, my heart aches all the time.”
After a decade of providing constant, 24-7 care for Jeff, who suffered hypoxic brain damage and was left with poor balance, explosive uninhibited speech, severe mobility issues, global cognitive impairment and a laundry list of medical needs, the strain is beginning to show.
“I’m getting to the stage I’ve got to watch for my health,” she says.
“I’m getting worried how much longer I can do it. And I would never, no way ever let him know think that, I’ll do it til the end.”
Every carer has a different story, Jen says, but most are linked by the “overwhelming and frightening experience of how it all started”.
And sometimes, hopes dashed.
She remembers being given permission to take her husband home after a month of rehab.
She remembers thinking that maybe, just maybe, her worries were beginning to fade.
“Take him home? I thought ‘Wow, our life’s are back together’,” she remembers.
“But you don’t realise. He couldn’t shower himself, he couldn’t dress himself, he couldn’t toilet himself, he couldn’t walk by himself, he couldn’t get in and out of bed.
“He can’t do anything. This is where it all started. It was the biggest fight of his life to survive.
“I had no idea, ever imagining how challenging our life was going to be.”
The die was cast ten years ago when her partner of 13 years was found on the floor of a hotel, lifeless.
“That day will be imprinted on our minds forever,” she says.
It was a typical Friday evening, and Jen and a friend wandered down to a local hotel to meet Jeff who was knocking back a few post-work beers, as he always did.
But this day was different. When they arrived Jeff was “completely lifeless on the floor”, surrounded by five paramedics.
“There was a gathering of people in a circle around him,” she recalls.
“He had died. As soon as I got there they said ‘I’m sorry but we don’t have a pulse’
“He was blue.”
Jeff was eventually revived by a defibrillator. But as life returned to his body, a stroke took hold.
On the way to the hospital in a separate ambulance, Jen began to understand the feeling of helplessness.
“It wasn’t looking good,” she says.
“It was many hours of sitting and waiting in the emergency not knowing what was happening.
“I had no idea of the depths of what was going to be the outcome, because these things don’t happen to you.”
She’ll never forget seeing him in intensive care for the first time: “All I wanted to do was cuddle him like a baby. They are the things that will stay in my mind forever.”
Every moment over the next seven days spent in IC was painful, as she watched families forced to pull the plug on their loves ones.
She wondered when her turn would come.
“It was that fear... that fear of asking me to turn it off, was horrific,” she says.
Despite fears he’d become a vegetable and have no quality of life, J eventually pulled through, although the next decade has proven to be just as tiring.
“Caring is very exhausting. The drive to push forward sometimes takes all of my energy,” she says.
“You have to be so organised.
“I’ve realised there is no magic wand to change this.
“It has to be done, there is very little time to relax. And your heart aches for what can’t be, and your dreams and aspirations of what you thought your life would be, are no more. Your whole world is turned around.”
BrainLink has provided important support, despite the distance: “I know if I needed help I could call and feel comfortable to talk to them.”
The pair, who only married the year after Jeff’s stroke, have managed to retain some semblance of their former lives.
Jeff loved the open road, as he worked for a mobile billboard company (“the highway was freedom for Jeff”), and they’ve managed to travel to Airlie Beach, Alice Springs and Tweed Heads, towing an old 1987 model caravan behind them.
“I’ve strived to keep a normal life. I’ve never towed anything before, I’ve never been the person who fixes the car, my husband always used to do that,” she says.
“I’ve had to learn a whole new life.”