More after-care, please

For most of her life, Faye has had to be self-reliant, but after open heart surgery all she really wanted was for someone to take her “by the hand” and guide her through it.

Faye knows how to stand on her own two feet. She’s done it through good times and very hard times.

After losing her husband to suicide 35 years ago, she became sole carer and provider to their three daughters, aged 14, 12 and 9 at the time. Things were tough financially, so Faye got work as a chartered accountant to support her girls, but the emotional fallout from her husband’s death was harder to fix.

“There was no help, we didn’t have counselling in those days, and in fact you find your friends shy away in some ways,” she says. So it came down to Faye, to look after her family and “stick up” for herself – and it’s what she’s done ever since.

But when heart trouble came knocking 12 years ago, Faye’s usual strength and independence wasn’t quite enough to see her through. After open heart surgery, she came to the stage where she needed help. “People that have had heart surgery need some after-care,” she says.

“A lot of people won't ask for help, but they need it."

Relying on the patient to go out and find support groups or exercise classes is not that realistic, she says, “because you’re not in a state to go out and find things really”.

“You want somebody to take you by the hand, that’s it, and lead you to some of these meetings that you (The Heart Foundation) or the hospital has.”

How Faye’s heart trouble began

It was 10 – 12 years ago that she noticed any trouble.

“I was fatigued, people would say ‘oh you’re tired’ – no I’m not tired – I don’t like the word tired because there’s a total difference,” says Faye.

“So I went to the doctor and told him I was fatigued and they got me an appointment with a cardiologist who said, ‘there’s nothing wrong with you, you’re just bored!’ Well that didn’t do me much good, I’m not a bored person so I said to him, ‘You’re not getting me any further and I can’t live like this, so I’m going to go to a specialist in town...’”

When she did see a specialist, “he said ‘wow – that he would say you’re bored’ and instead recommended a pacemaker for her.

Faye was diagnosed with atrial fibrillation, which the pacemaker helped with. But she didn’t feel great with her medication, and after a while she told her doctor about another concern: “I said I feel like there’s something leaking and then my head will spin around and I’ll feel terrible, so he said ‘I’m glad you told me, you’ve probably got a leaky tricuspid valve’. So I had to take home monitors that would test my heart and relay what was happening day by day.”

Faye went on a waiting list to repair her leaky valve, but waited two years for surgery. “Finally I got to Auckland Hospital, but they were too busy at that stage and so they sent me off to private – to Mercy Hospital. I had open heart surgery at the hospital and that was a relief,” she says.

Faye still has her pacemaker, which her body uses 100%, she says. It’s lasted her eight years and only recently needed a battery change. “They do a very good job at the North Shore Hospital of checking that out. I went every three months in the beginning and then every six months, and they just measure out what it’s doing,”

But Faye can’t emphasise enough the need for care after a heart operation. “A lot of people won’t ask for help, but they need it.”

Faye’s after-care experience

“You’re not allowed to go home for a while until somebody’s there to help you but that’s not always easy when you have family that don’t live close to you, and family that work. It’s not easy so I spent a lot of time by myself and then it’s really hard getting your meals ready.”

Before being discharged from hospital, one of the head nurses had a meeting with Faye and her youngest daughter, Susan, but Faye did not find it helpful. “This lady that was doing it all, she was talking to Susan. She would say, ‘now when your mother gets home and this and that’, and I said to her, ‘excuse me but I’m here, talk to me too, I’m the one that’s got to look after myself’.”

What was really missing when Faye got home was the practical help. “You needed help with bed-making, that’s hard work. I find making a bed today hard, and cooking meals and cleaning,” She says someone did come to the house, but it was later in the piece when she was already feeling better. 

Faye says that a green prescription and leaflets were not what she was after. Her feedback to the health sector would be to “take people by the hand, go and visit them like the district nurse used to do, see if they’re coping with their food, and by themselves, and with loneliness and depression.”

Just talking things over also helps. Reflecting back on her husband’s death, she says, “That’s what I’ve thought after all the years – how often do we sit down and actually listen to people on a one-on-one basis, like this even?”

Life since her recovery

About eight months into her recovery, Faye went back to work – this time working for a trucking company down the road from home.

And after a while she got into tramping. “I used to do a lot of tramping everywhere around New Zealand. After I got through all this heart trouble, I continued doing that. 

“I went to the gym one time, got a personal trainer and got really fit and went walking all over the place. Then I travelled overseas and we cycled from Belgium into Amsterdam. So no, I didn’t sit down and do nothing,” she says.

But tramping is no longer on the cards. Faye’s more out of breath now and other health factors have cropped up.

But she’s not exactly sitting still. Faye volunteers one day a week at the Heart Foundation, and another day a week at the SPCA. “And they (the SPCA) have a lot of events which I sometimes volunteer for, like cupcake day or the Easter Show, and it makes me get out.

“I’ve got a time that I’ve got to be here and there, so I think voluntary work for me is very good.” For Faye, it also means meeting new people and learning new things – a good counter to being home alone.

Life does feel hard, she says, and can be lonely. It’s easy to feel like a “hermit” at home, but being a person who’s always found a way to get by, her solution is to “get out and do things”.

Faye’s advice to others living alone is to look into getting a medical alarm, in case of falls or the unexpected happening around the home when you’re not near the phone and need medical help – it can give some peace of mind to individuals as well as their families.

 

Shared November 2016

Please note: the views and opinions of the storyteller and related comments may not necessarily reflect those of the Heart Foundation NZ.

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