Participants experienced a wide range of health and illness conditions which ranged from mild pain and age-related chronic conditions such as high blood pressure, to heart attack, stroke, cancer and near-death experiences.
Participants experienced a wide range of health and illness conditions which ranged from mild pain and age-related chronic conditions such as high blood pressure, to heart attack, stroke, cancer and near-death experiences. For the people we spoke to, however, health was not defined by disease (see Health and wellbeing); nearly half of the participants said they were in good health despite the pain, physical restriction and numerous other conditions they dealt with on a daily basis.
Denis has severe mobility restrictions and says he is ‘wrecked but healthy’.
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I don’t have diabetes or any of those creepy crawlies that hang around older people. Apart from the AF [heart rhythm problem] which I’ve had all my life, then this problem with my legs, it’s – and the spine which is an injury, that I think I’m quite healthy – wrecked but healthy.
Fred has had numerous health conditions but is in little pain. He feels lucky to be in such good health.
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The rheumatoid arthritis is evident in your hands and so on, but I haven’t had any pain at all with it, I haven’t had any pain. I get a bit of gout occasionally, which is a very, very painful thing, but because of the peripheral neuropathy takes your feeling away I haven’t had any pain with the gout. So, there’s that, there’s the arthritis, the heart, the blood pressure, but those are controlled by medication and apart from that, I’ve been in good health all my life. I’ve only been in hospital, oh in the army but, in Cape Town I was never in hospital and so here I had pneumonia once here and I had a slight stroke, which has affected my right arm. That was about 12 years ago and I don’t have the full use of this, I’ve got to heave it up sometimes. Otherwise, there’s nothing wrong with my health whatsoever, I’m very, very, very lucky. As my daughter said, she hopes she’s got my genes in her.
Dorothy gets severe back pain but feels she is very healthy compared to some of her friends.
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But you know, it’s just back pain, and my – I wouldn’t know, but I just assume it’s worn-out muscles, because if I lie down it gets better. But by three in the morning I’ve got to keep moving in the bed because my hips hurt, so – I can’t sort of do much about it. I mean, compared to a couple of my old mates I’m as healthy as a 12 year old.
The most common health issue participants spoke about was arthritis. People had arthritis in their back, hands, legs, knees, neck and all over their body. Despite the pain arthritis caused, it did not stop people from living full and rewarding lives.
Kaye describes what it is like having rheumatoid arthritis. She says it is frustrating but refuses to let it rule her life.
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Mentally I feel like 35-45, but my body won’t let me do it because I have rheumatoid arthritis. I don’t let it rule my life, but it does impact on my life because I can’t do things. And that is frustrating. Very frustrating. As for my eyes, that’s fine. That’s treatable and I don’t have a problem with my eyesight, but rheumatoid arthritis I do and it – There are a lot of things around that help you but it’s the frustration that gets me more than anything. That I can’t do things. And no one understands that unless they in turn have walked in your shoes. I think it’s like most things, but it is. It’s very frustrating.
So what does it feel like? What does rheumatoid arthritis feel like?
In the winter it can be a sharp, sharp pain like lightning or it’s always there. When I stand up after this interview I will hobble like I’m 105 because I need a hip replacement, but once I get going then I’m okay. I just limp and that’s fine. So I won’t let it stop me doing what I need to do. Because life is too short. I want to get on and do what I want to do. I don’t want it to rule me and it’s not going to. As I said I’m very fortunate that the medication I’m on has worked and is working, but yeah I’m not going to let it stop me doing – It will stop me doing things as long as I would like to do it. But it won’t stop me from doing them full stop.
Many people experienced pain, which ranged from general aches and pains associated with ageing, to severe and debilitating pain which limited mobility. People spoke about pain as something that they could ‘put up with’, ‘work through’ or ‘deal with’.
Sometimes
Sabihe cannot breathe the pain is so bad, however, she keeps going and does not let it get her down.
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The reason the house is so untidy is I get up, say I do some washing and put my washing on the clothes horse, and I have to sit down, I couldn’t breathe anymore, the pain is so bad. On the top of all that, not this Sunday, Sunday before, I went to [a shop] and I dropped the lid of the compost bin on my toes, and I thought I had chopped my toes off. So this is very sore and that’s adding to my pain. So I have so much pain. Ten minutes, 15 minutes, and I have to come and sit here and lie down.
Yeah, but physically I’ve got arthritis, which is in the family. My grandmother was disabled, my mother was totally disabled probably from age of 40 onward. Eventually when I brought her here to look after her she was in a wheelchair, because of arthritis. She didn’t have a very good mental attitude, she sort of allowed the pain to get her down, but I’m like – actually, many years ago someone said to me “oh, we all have our own cross on our back to carry”. I said “the difference between me and my husband or other people is they just go ah-ah-ah under the cross, but I keep going, throwing it away”, and I’m not going to bend under the cross, I’m just going to throw it off my shoulder.
Lan has pain in several parts of her body but feels she can deal with it.
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So when you had the back operation, you said that was an indicator to you that you were getting older, was that the first time that you’d started to think those kinds of things, yeah I am getting on a bit?
I think about it, but not a lot. But you get back pain whether you’re older or not. At 63, 73 or 53, I don’t think very much about it, it’s a problem and I dealt with it, that’s it. That’s my view point about life, you deal with it and it’s over and you get on with it.
So you told me that otherwise your health has been really good?
I have niggly problems like I have knee pain. They have all got to do with bones or nerves or things like that, but I have no blood pressure. I’ve got a little bit of high cholesterol, but that’s about it. But I’ve got knee pain, ankle pain, back pain, things like that. But you can deal with that.
Participants took many types of medication for various health conditions, most commonly blood pressure, cholesterol and blood thinners. Several people said they did not like to take pain relievers. The reasons they gave for avoiding pain relief were side-effects, the risk of becoming dependent, not wanting to take drugs; and there were other ways of overcoming pain such as staying mobile and diverting your attention.
Kaye prefers not to take pain relievers for her arthritis because she does not like to take pills and feels she can overcome the pain in other ways.
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I’m very fortunate the treatment that I am on has stopped it increasing at all. It is at a level it will slow down. I won’t be crippled with it. I’m very fortunate I won’t be crippled with it, but it stops me doing certain things. Pain wise I prefer not to do anything about it. I have a certain amount of pain relief but I won’t take anymore because you can put up with pain.
Why are you reluctant to take anything?
I just think from, there’s loads of side effects. I just don’t like taking pills, but I have to take the pills so I take as little as possible and I think to a certain extent you can overcome pain. You reach a level when you think yes, I do need help but I don’t think a little bit of pain hurts. I’m not one to pop pills. As I said I take what I need to take and you get over it. I love my garden and I’ll work in the garden as long as I can to the point that I can’t do it anymore. I won’t let my disease take over from what I can do.
Lois has arthritic pain through her whole body but she only takes medication when the pain gets very bad.
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Charles: Well, up until four or five years ago Lois [my wife] was perfectly healthy, no worries, no problems. It wasn’t til the arthritis there again started to set in and it was giving her trouble in the legs and now it’s gone to her hands as well so it’s slowly but surely creeping right through the body.
Lois: All you can do is take medication for it to kill the pain but I don’t want to take too much because I might need it one day so I just go–if it’s really bad the pain I take medication, otherwise I talk myself through it.
Charles: We both have set medication but Lois takes far more than what I do and should the pain become more acute she has to take more painkillers as the day goes on and things like that but it tends to slow you down a little bit.
Lois: It certainly does.
Diminishing eyesight was noted as another major problem associated with ageing. This ranged from having difficulties reading small print (see
Technology: Val) to having cataracts, glaucoma or being blind (see
The ageing body: Tonia & Michael).
Several people had had heart attacks and heart bypass surgery. Gypsy said he took his triple heart bypass surgery in his stride and found his family were more worried about it than he was. Earl has had two quadruple bypass operations and found them difficult to recover from.
It took
Earl months to recover from his two bypass operations but he would have another one if he needed it.
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Yeah, when I’ve had a heart bypass it takes about three to four months to get over that, and I’ve had it twice now and I wouldn’t wish that on anybody but I would still go down and have a third one if I had to. I wouldn’t think twice about it. I would still go knowing what’s going to happen and how sick you are, crook you know, no energy, nothing.
So that’s before the surgery or after?
No after. It takes you a long time to get over it, after the surgery. Before you don’t have nothing, no problems.
So that’s something that the doctors diagnose and tell you that you need rather than you feeling the symptoms that you need it?
Yeah they diagnose the problem. Touch wood I’ve never had any heart pain, no heart attack. They’ve just picked that up on the dot you know.
And that was a quadruple bypass?
Yeah both times yeah.
How old were you when that happened?
I would be about 56, 57.
So that was quite young?
Oh well, yeah, it would be about then.
How did that affect you at that time?
Well at the time it’s terrible because I play lawn bowls and it took me about three to four months before I could get a bowl down the other end, and then you know how smooth they run on the lawn. It took me a long time, to get energy wise and feel wise you know. I knew I was crook, but you’ve just got no energy, you’re just dead.
People who spoke about sore hips mentioned how debilitating this was for their mobility. Those who had undergone hip replacements were relieved to be free of pain and able to be much more active.
Marlene has had a double hip replacement which she says has given her back 20 years of life.
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So I’d say that health would be the negative side of ageing. Not for me, necessarily, because I don’t have any health problems of any kind. I’m very, very lucky actually. Extremely lucky.
Although you’ve had two hip replacements but you don’t classify that as a health–
No, it was just something that had to be done. I’d put up with it for about seven or eight years. Not even going to a doctor to find out what was wrong with me. I just went through it, the pain.
So that’s pain.
Worked through the pain and when I was busy I would never think about it. When it was all over, I could hardly walk. Like I was saying, I was doing [Christmas] Carols and I’d start at nine o’clock in the morning and at 11 o’clock at night when I finished, then I was hardly able to walk. All day long I wasn’t in pain and I managed to walk. But I tore a glute muscle and that’s when we found out that my hips were bone-on-bone both of them. And it was the best thing that ever happened because I don’t believe how good I am now to what I was and that’s what’s giving me a great deal of joy at the moment as well because I would do half an hour’s housework and sit down, going before the hips. Do something and have to sit down and when I was at home – not when I was out – but when I was at home. Whereas now it’s like, “This is fantastic.” It’s like I’ve been given back 20 years of my life. I feel physically so much healthier and because of the hips is when I got back into the pool and that’s helped as well now. I’m up to doing a thousand metres three times a week and that’s given me; fabulous. I just love it. It’s also helped my health as well, my joints and everything.
Other common health problems that people mentioned were knee injuries and joint replacements; broken bones which took a long time to heal; diminished hearing; breast, skin and prostate cancer; teeth being removed; strokes; hernia; gout; ulcers and many more. People responded to these afflictions in various ways. Some people were annoyed because they were unable to do things, some were angry at their diagnosis, and others became depressed. Len described how he has turned to alcohol since being hit by a series of health problems.
Len feels he is not mentally strong enough to cope with ageing and all the health problems this has brought.
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I had to make decisions about my life. Like, I went to a dentist and they said you’ve got to get rid of all your top teeth and that was twelve in one day, in two hours and that was pretty painful, that was the start. Then I had an x-ray done and it disclosed that I had had a broken ankle and my right knee was US, didn’t have any cartilage left. And they said “don’t you keep falling over?” and I said “I certainly do” and they said “well you’ve got to have them both fixed otherwise you won’t be able to walk”. So I had to make a decision on getting rid of my teeth and that was pretty hard, I haven’t got my teeth up the top anymore so I’m not really attractive. And then I ended up with a plaster cast and I’m not allowed to drive a car and I’m not allowed to do this, I’m not allowed to drink alcohol. I think it’s on the back of the door up there, the rules put down by one of my sons.
I find it hard to get motivated now. I’ve just been through semi hell. I’ve been on high drugs to kill the pain and all that sort of thing and I just turned to alcohol. I really can’t get down to the mailbox and things like that. I feel quite useless and it’s a culmination of a lot of things – I haven’t been well enough and I haven’t been mentally strong enough to cope with getting old and my body packing up. They say I’ll be ok in three months, well I certainly hope they’re right because I won’t be feeling that good if they’re not. I don’t want to be sitting around here doing nothing.
A far more common response to illness and incapacity, however, was to accept the situation and get on with life. This was true for minor irritations associated with ageing (see The ageing body) as well as more serious disease diagnoses.
When
Sabihe was told she had breast cancer she was calm and thought she would find a way to deal with it. Her doctor interpreted this as her not understanding the diagnosis.
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Another thing was when I went to see the specialist when there was a doubt about breast cancer, she sent me for a biopsy, and then when I went back for the result I knew straight away from her behaviour and the nurse behaviour that they’d found something. When she told me it was another thing, another milestone, another thing I had to live with and fight with. So there was no emotion, nothing shown. She just looked at me puzzled and then she told me “next time you come bring your family member”, so I thought ‘oh she wants to tell them to look after me after the operation’. So she’s turned around and said to my daughter “I don’t think your mother understands what I’m telling her” [laughs] so that was when I got angry. “AAARRGH”, I yelled at her. I said “just because I don’t tear my hair to pieces and I don’t beat my breast because I’m a Middle Eastern woman, it doesn’t mean that I don’t understand”, I just have learned in my life that whatever happens you just deal with it, you don’t go off your head and think you’re no good anymore and all that, you just fight it. So now she’s one of my best friends, and she can’t compliment me enough every time she sees me. It’s always been like that because I know what it’s like to be sick and I know what it’s like to be healthy, so I always aim for the healthy option.
After
Shirley had another stroke she wondered how she would cope. She found it helpful to take life one day at a time.
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So having a stroke, when did the first stroke happen?
About five years ago.
And then you had another one as recently as three weeks ago?
That’s correct.
What has that felt like for you?
Well the first two days I felt very distressed because I thought I hadn’t had one for two years and here I am being put back to square one again and now how am I going to cope. I have Brian [my husband] home sick, just out of hospital not long ago. I have so much work to be done. I’ve got three classes of Sunday School to prepare for, and here am I, I just can’t afford to have a stroke. But then I thought about it, well, we live day by day, and if we just take what happens one day and get through it and do the best we can, and then the next day will be even easier because we know we will cope. Thinking along those lines I think well I’m going to make it. I’m not going to let this hold me down. I’ve got to improve because I still have Brian to look after. So I think with ageing it’s certainly very despairing in that direction when one feels unable to cope with things. It can be very distressing. If you haven’t got rellies or friends to support you then you’re really lost.
Some people we spoke with had been moribund and close to death, but had recovered. Two people had their bowel perforated during an operation, Jack had ruptured ulcers and Des had a life threatening blood infection. When speaking about their near-death experience, people talked about the impact on their family and their fear of having the same thing happen again.
Len went into the hospital for a check-up, was sent to emergency and almost died twice. The doctors told his family he would never walk or talk again.
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It’s probably three years ago I went to hospital because I was feeling a bit crook and the doctor said go to emergency and I’ll give them a ring and get booked in and get them to look at your liver. And they got to look at my liver and it was quite painful because they put a tube in down here somewhere and the further it goes in, the more painful it is. They can’t do it under an anaesthetic or something – anyway I put on a bit of a performance and I told them to stop because I couldn’t stand the pain anymore. Anyway I ended up with a couple of jabs to quiet me down and a few other tablets supposedly, because I wasn’t aware of it, and I woke up 33 days later. They overdosed me on something and then they couldn’t revive me. I died twice, got pneumonia – and I just went in there for a check-up. 33 days, and I was in hospital 55 all up. Lost something like 35 kilograms and didn’t get enough food, I was skin and bone when I came out. They told my family that I wouldn’t talk or walk again, well they were quite wrong because I did talk and walk again.
After contracting meningococcal septicaemia
Des almost died. Being a driving instructor, he is now worried when people cough in the car.
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In 2000 I contracted meningococcal septicaemia and nearly died. That had quite a catastrophic effect. It was not a very nice experience, lying in a hospital bed and the whole family was in the room, and you felt like you were looking at a television set. Because you catch that from people coughing, so I’m now paranoid about people that cough. So if they get cough, they get out of the car and go home. So you know, that’s probably the most significant thing I can think of that’s had any effect. As yet I haven’t really – I can’t think of many things that have affected me as far as age goes. I get a bit concerned because the vast majority of the people I deal with in my occupation, where I deal with people that have got medical conditions and the aged, but the medical conditions, I would say that 95 per cent of the people I deal with are younger than me.
So you feel fortunate?
Well, I feel fortunate, but it’s also quite staggering that you get 27-year-olds that have had a massive stroke. This week I’ve had a 27-year-old that had a massive stroke, a 38-year-old had a massive stroke, as well as people that are 60-odd but are still younger than me. And you know, you sort of look at these people and you think that they’re in quite a mess, so yeah, I consider myself very fortunate not to be in that situation, yes.
Brian H contracted septicaemia and golden staph after an operation. He describes what he remembers when he was unconscious.
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Brian: Yes. I first went to hospital for what was going to be a – it was a major operation but it wasn’t a major, major operation, but it was going to be significant in that I had a hole in my bowel and a hole in my bladder and that needed to be repaired. So I went in for the repair and during that operation the bowel was perforated or whether it had perforations or it was very thin or whatever happened, anyway my bowel was perforated. Consequently I had septicaemia and golden staph and the big bug, whatever that’s called, I can’t remember the scientific name. I was then extremely ill, and not only in ICU but I was also on life support and I was in a coma for 40 days and 40 nights. During the time in the coma I could hazily recognise some things and then when my family came up from Melbourne to say goodbye I said I don’t think I’m going! So I didn’t die, and then after I saw this great light and I opened my eyes and I’m back in the ward, no life support, no nothing, so I can’t remember them having taken it off or anything like that, but I do know that me wife, I could feel her presence that she was there every day apart from one part where she’d had a stroke herself. So she was in hospital for a few days during that period that I was on life support. My wife was also in hospital.
Shirley: He was in this coma and the doctors had declared him brain dead and I was going over there possibly to be present when they pulled the plug. I was talking to Brian and no response from Brian, and the man says, “No use talking he’s brain dead. He can’t hear a word you say” and I said he is not brain dead. He hears everything I say, and they said well prove it, and I walked over to him and I said, “Brian, if you can hear what I’m saying raise your eyebrows”. Up with his eyebrows, he’s completely paralysed, can’t move a thing but I thought he’ll move his eyebrows, up with his eyebrows. The doctors got all excited, “He’s alive, he’s alive, he’s alive”. So it’s just so wonderful it worked out. I think prayer had a lot to do with it because I was sure praying.
So Brian do you remember any of that?
Brian: No, not expressly. I just remember vaguely, vague pictures. I do remember they brought my great grandson in for the first time when he was just a baby and I do remember that, but it’s very vague and very hazy.
I’ve heard of, from other people’s stories that we’ve heard, they tell of when one partner is sick and the other one takes on the role of the carer. In your situation you were both quite ill at the same time. How did you cope with that?
Brian: Well Shirley coped. She was absolutely excellent; she really became the carer of our partnership.
Shirley: I had to.
Brian: She sort of had to. As soon as she got out of hospital from having her stroke she was back at my bedside straight away. So she’s very strong-willed person and she managed to cope. I believe it was quite stressful for her.
Shirley: It was, it was stressful…
For people who were experiencing significant health problems ‘hope’ was important. Some looked to God, others looked to doctors or allied health professionals for effective treatments and yet others felt it was important to be more informed by searching for information on the internet (see Technology).