'You need a lot of common sense and positivity': What it's like to suddenly become a carer to your partner (2024)

I met Mark 20 years ago in Venezuela, where I was born.

Mark was fromAustralia and travelled a lot, and was the type of person who wanted to be immersed in the culture of the country he was in.

We were both engineers, both loved to party and to entertain, and we had a lot of friends.

He was a very smart and very funny guy. I just loved that I could sit and talk to him about anything.

But our lives changed in January 2015 when we spent Christmas with my sister in Miami, Florida.

Mark was about to turn 49, I was 42 —our kids were five and six.

On January 6, I remember Mark woke up early because he was getting an early flightand I was in the kitchen.

Half-an-hour later he was in the office and screaming at me to "come here" —it was a very stressful scream.

I got there and found him with his head down, and he told me he thought he was having a heart attack.

He actually had a brain aneurism —it was a very bad one.

He was taken to hospital and hadsurgery to relieve the pressure on his brain, but it was too late.

The doctors said Mark wouldn't be able to do anything: wouldn't be able to talk, walk, or do anything by himself.

Bringing Mark home

We spent two months in that hospital, but I knew I had to get him out of there.

We didn't have any access to early therapy because we weren't US citizens, and I couldn't take him back home to Venezuela because it didn't have a good public health system.

I decided we had to move to Australia, Mark's home, but somewhere I had never been.

Moving there was not an easy decision, away from my family and friends, but it was the only one.

I didn't even think about the social and emotional support —the only thing I thought about was giving him the care he needed.

Mark was flown straight to a Brisbane hospital, where he stayed foreight months.

Frustration with therapy

The doctors kept telling me I needed to put him in a nursing home, but I knew there had to be another option.

I discovered a residential care centreand, after pushing and pushing, he was transferred there.

It was much better, but wasn't enough. He needed therapy every single day, which he sometimes wasn't getting.

It was difficult coming home at the end of the day and having to leave him there. Thekids didn't like going there either.

I decided to build a house, using everything we had, so we could have him at home.

I bought a block of land and sold Mark's properties. Ittook two years to build with some extra financial help from charities, but it was worth it.

Markfinally moved in with us in October 2019, and it has not been easy but it is much better.

The house has no steps on the bottom floor, has wide doorwaysand space to fit his wheelchair around our bed and the shower in the bathroom.

I have a rotating roster of carers, who are always there between 7am and 7pm. I care for him by myself overnight.

Mark's carers are paid for using NDIS funding and Centrelink allowances.

Mark shows improvement

I was told countless times that Mark would never walk or talk again.

But he now can talk —he can't talk like you and me, but he can talk!

Sometimes he's very stubborn, but he always has been.

There's still a long way to go, but the improvement is amazing.

He can even walk with someone holding him, and even though he's messy, he can eat by himself.

It's because he has therapy every day of the week.

But the thing is, with improvement also comes a lot of frustration. Improvements are not quick.

It takes time, and every time Mark does something new, he wants to be like he was before in five minutes.

Sometimes he wants to quit, and that's part of the big job having him at home all the time —to remind him why we're doing this and to keep him positive.

Tension between carer and being mum

I have reached a point where I have a nice group of carers I can rely on, but this moment is difficult.

I have my teenage kids who really need me, and it's an important time for them.

Sometimes my daughter has a game, and if I see I'm not going to be home before 8pm, I have to ask friends to take her home.

Same with my boy —if he goes to a party, I can't go and pick him up.

But they have grown with this situation. They're resilient kids.

Affording everything is also hard. When you don't work, money is always tight.

I've been trying to find something for my own mental health, something to do part-time, but whatever I do will not give me enough money to live.

I miss my family back home too. I haven't seen my mum and dad for seven years and they can't afford to come here from Venezuela.

I have 38 cousins and my family is huge —I grew up with all my family and the craziness that comes with that.

My kids don't have that, and for me, that's very sad.

Mark and I used to be very spontaneous people, but we're not like that at the moment.

We used to talk about all the plans that we had for the future, but we're never going to be able to do them.

Pushing forthe best outcome

You need a lot of common sense and a lot of positivity to make the best out of this situation.

I didn't let anyone tell me 'no' when it came to Mark's health and therapy, and every little improvement showed me we could get there.

You just need to keep trying.

It's also good to find the right people to help you.

And it's not always positive —so many times it was three steps backwards.

But I'm constantly looking for positive things everywhere, on the internet, on the TVand on the radio.

My new goal is to buy a car so I can drive Mark to the city.

He always wants to get out, but I just can't afford the taxi every time.

Last week we went to the city which we hadn't done for ages.

We went, and we sat. Mark had a beer, and he was so happy.