Aylene

Carer’s story

Caring for whānau with heart disease

Aylene cared for her brother Jason during his final journey with heart disease. She opened her home to him and supported him with the gift of her time until the very end.

Coming from a large family, whānau has always been central in Aylene's life. She and her brother Jason were two of twelve brothers and sisters, who grew up in the Manawatu in the 1970s. 

Jason was always outdoors. A sporty kid at school, he played ruby and touch. After leaving school, he worked as a builder around the country, before coming home to the Manawatu, where, in his final years, he worked in the Awahuri Forest for the Kitchener Park Trust. He also loved being at the beach and diving for kai.

His other passion was Māoritanga. "He was a speaker on the marae and singing Māori songs," Aylene explains. "And he was a religious person, prior to his death."

Aylene isn't sure when Jason first found out he had a heart condition, but she says that it was a while before she realised how serious things were.

"He was going to doctors' visits and hospital visits," she says. "But I didn't really take any notice of it until probably two or three years before he passed away when he was 53."

24/7 support

With his health getting worse, Aylene decided that Jason should move in with her and her kids so that she could give him 24/7 support.

"There were times when he would go off to his appointments on his own, but he would always come back drained and it worried me as I could see that it was draining him. I could see the stress that he was going through. We decided I would be his support person to go in and make sure that everything was ok with him."

Despite the regular doctors' visits, Jason didn't talk a lot about his condition. 

"He confided in me about lots of things, but he wouldn't tell me too much about his heart condition," says Aylene. "I think the first time I was actually aware that he even had a heart condition was when I went to the hospital to visit him. The doctor was there, and I asked him why Jason was in hospital, because he'd only just been in hospital the week before. So I needed to ask the doctor what was happening with him." 

The doctor told Aylene that Jason had a heart condition and explained how important it was for him to keep taking his medication and to eat as healthily as he could. 

"For me it was a big eye-opener to understand how your body can be affected by different foods, and how it can affect you without you realising it until years later," Aylene says. "With my brother having his heart condition, it has made me realise that salt is not good, and neither is butter and sugar in huge quantities – and he was taking them in huge quantities."

Being a carer for a person with heart disease

Aylene knows it's a big job to become someone's carer, and there are a few things you need to consider before you take on the role. 

"I think first and foremost is to ask the person with the heart condition if it is OK for you to be their support person, because sometimes you need to think of them and not force yourself on them."  

Once that's agreed, she says its important to remember that you're there for support, and not to be the doctor or the nurse.

"You need to be a good listener – all the good and bad, whatever is happening in that person's life – because a good set of ears can take the weight off the person that is going through a heart condition.

"A good support is someone that can listen and not be judgmental, and not be the doctor, not be anything else but yourself. Because it makes things a bit better for that person, when they feel comfortable around you."

She says it's also important to let them know you're there for them.

"Just let them know that you are there all the time, 24/7 sometimes. They might get up in the night or wake up in a nightmare, and you've got to let them know that you are there for them to reach out to."

Quality of life in the final days

As Jason's health got worse, Aylene knew it was important to give her brother the best quality of life that she could.

"When they are given only so long to live, you treat every day like your last one because you don't know how long they are going to be on earth for."

What's more, she says you have to accept when it's time for them to die. "If they want to go it’s OK, it's alright. That is a part of living, but often we don't see it like that, do we? We just think that people are going to live for ever and ever, but they don't."

She says it's easy to feel that as a carer you haven’t done enough, but that it's important to take heart from the fact you've tried your best. 

"Don't beat yourself up, you can only do the best you can," she says. "I think there could have been things that I could have done better for Jason, but I know that he was at peace when he left."

Shared August 2019