The cost of healthcare places many people in precarious situations and forces people to make difficult decisions, such as prioritising one household member's healthcare over another, or paying the electricity bill instead of getting medical care.
Bob is retired, he lives in south western Sydney with his wife, who he cares for.
Wife is diagnosed
I met my wife and we moved to Queensland and in Queensland she started to get dizzy spells. I used to come home and find her under the clothesline because she’d passed out and doctors couldn't find out what the problem was. They did scans and everything and they didn't know, no idea. Her legs kept swelling. She had problems with her legs that nobody dealt with. It’s been 35 years and it's only recently that we've been able to pin down the issue with her legs.
We left Queensland and came back to Sydney they tried to deal with issues again, they couldn't deal with them. We tried to pursue it further. Then we moved to Western Australia and it in Western Australia she became sick. She suffered rheumatoid and osteoarthritis they gave her all these medications. She had severe reactions to the medications. Consequently, it built up into a portfolio of adverse reactions to medications. I was working and looking after my wife, making her comfortable before I went to work. And when I came home and started to look after her. I ended up having to do all the washing, cooking cleaning, ironing helping her and still going to work.
Then we decided we'll come back to Sydney because we had family here and we thought the family would assist us in some way. But no that wasn't to happen. We came here but she nearly died twice at home. I managed to get the ambulance to her.
Stopped work and became carer
I was full time employed, and then suddenly I had to stop work [to care for my wife] and that made a dramatic cut in income. Then I had to start thinking about where's the money gonna come from? Where's the information gonna come from to help me?
The process of the transition for her from being reasonably capable of doing things for herself [to having to rely on others] has been quite traumatic.
So what I had to start to think about was to readjust my life to deal with the current circumstances my wife was going through and being able to cope with this. And that's not an easy road to follow sometimes. It's not only just it's just your wife is sick, it’s the transition the carer has to make and that’s like hitting a brick wall. I think this is overlooked.
You have to learn about her conditions you have to learn about her problems. Then there is a side of the feminine hygiene part that women keep to themselves that you now have to take over and learn about, [it's a] dramatic learning curve in that sense. There is not a real lot of guidance in how to deal with these things.
There's carers' outings and things like that that I could possibly go to have a reprieve from the situation but no, I've doing this now 2 year's part time 5 years full time. I’ve been a full time carer since we came back from Western Australia and it's just a constant, constant demand. My day starts usually starts about 7:30 to 8 o'clock in the morning and finishes round about between 1 to 2 the following morning.
Costs of living
Now I get a carers pension and all my carers pension goes towards paying the rent. My wife adds $100 from her pension to mine so that I can put money aside out of my pension for paying the electricity bill. So we will live off my wife's pension. Now the issue we have is that we have expenses for medication and seeing specialists. I started recording this expenditure when we applied for public housing and we had to have evidence of what our expenses were.
Pubic housing offered us a unit, we rejected the unit they provided for us. The previous own had dogs in there and there's this foul stench of dogs in the carpet. My wife is susceptible to infection. Therefore, we couldn't accept the property, and we've been waiting for quite a while on this, and eventually we rejected the property because it was unsafe for my wife. So we ended up having to take out a private rental through a real estate agency. And the cost of that rental sort of swallows up my income from the pension.
We both need to see specialists
I see a specialist for a respiratory condition, I'm classified as a severe asthmatic. It becomes a struggle to trying to get things done.
And my wife has was just recently we've been trying to get a problem with my wife's legs dealt with the doctors for some reason wouldn't deal with it until my wife had an appointment to visit the cardiologist and the cardiologist mentioned to her that she had a hardening of the skin on her legs. And so I don’t know what that really meant and so when I got home. I studied up on hardening of the skin and that could be. And only a few weeks back we ended up seeing a lymphedema specialist at the hospital. And we have had to start now seeing a cardiovascular surgeon and so there's a whole range of other specialist that she now has to see, on top of a cardiologist and a rheumatologist. And the cost of seeing these specialists is quite high.
Even though we get some of what we pay to see the specialists back it still takes a bite out of the budget. We're still paying for keeping the car on the road, registration, insurance. All these other incidentals all come out of her income. And on top of that, her medications and the things we need for her and for myself takes a big slug out of the budget. So it becomes a struggle.
I still see my respiratory specialist, I do that through my local hospital. I've got a problem with getting lightheaded when I exert myself and I had to go see a cardiologist and have all these tests done. Luckily my heart is okay. But they're further out of pocket expenses. I've also started to develop an issue with memory loss, so I need referrals for that. I have a bilateral inguinal hernia I need to see a specialist for that. I can't afford to see them. But even if I did, I couldn't spend the time in surgery because nobody's there to look after my wife.
We had a look at a nursing home. We wanted to set up a program we whereby if something happened to me that my wife would be going to a nursing home. And we had looked at a couple of nursing homes, where they were going to put her temporarily. The places were not very satisfactory.
My mother died from dementia not long ago. While she was in the nursing home we found a few issues and I confronted one of the nurses, asked them to see one of the nurses, my mum was tangled in her bed sheets and everything and she hadn't been cleaned for a while, you know? And the fella said to me “I'm sorry that there's only me looking after this entire floor and I also have to help somebody else on the next floor”, and I said “That's not bloody good enough”. I said I wanted that fixed up right now and I went down and made a complaint down to the office. This hasn't been an isolated case, there's been a number of things that either myself or my brother picked up on. When you see that sort of thing you're sort of reluctant or reticent to put your next to kin into a nursing home, they're not getting the proper care. And I'm not prepared to put my wife there.
I couldn’t trust them, no I won't trust them.
Doing it for ourselves
So I saw I have to work out ways of doing things myself without aggravating our existing problems so that we can afford to keep her at home.
Particularly my mum died before the virus came out and now you're hearing a lot of issues on the nursing homes. It needs a massive shake up I mean a massive shake up, I know they're in the business of making money, but to let the patients they care for suffer as a result of saving that money is not acceptable and I'm not prepared to put my wife into that situation.
I'm not sure she's going to get the right care at the right time. She needs special handling, I have to help her in the bed I have to help her on the commode, I have to help her out of it. And there's certain ways you do that without causing her pain. And a lot of other places just simply wouldn't go through the process I do. They don’t do it in nursing home and they don’t do in hospital.
She was put on the commode in the hospital and no one came back to help her off. She has arthritis in both her legs and was in pain from of that sitting on the bed pan. I'm not blaming the nurses because there's only so many nurses that's employed to do the work. They also have a lot of other patients and that has to be understood that can't be there specifically to cater for everyone’s needs. But to me, well that's not acceptable.
So these are issues that we've come across and dealing with, with my wife's condition. So for me I would love nothing more than to be able to get myself treated, but in the process I need to make sure my wife is safe.
More people like Bob are sharing their story, stay posted for the release of the Consumer Stories of Patient Experience and Economic Disadvantage in NSW report by Health Consumers NSW and NCOSS.