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Heart failure

Coping with medication for heart failure

Living with heart failure usually requires some readjustment. Some people found that they needed to establish new routines in order to remember to take their pills every day. Some also needed to watch their weight and diet more carefully than before. Those who had partners to support these changes often realised how lucky they were.

The people we spoke with were typically taking multiple medicines; some were taking between 15 and 20 tablets a day at different times of day, some with or after a meal, others on an empty stomach. While some people appeared quite well informed about their medicines, others displayed poor understanding, saying they didn’t know what some or all of their medicines did. It was common for people to be unable to remember the names of all their medicines, sometimes because of memory loss. Most people kept a list of the drugs they were taking and referred to it when they talked about their medication. Many did not know how to pronounce the names of the drugs they were taking, but two of the people we interviewed had their own copies of the British National Formulary and looked up all their drugs.

 

She explains what each of her medicines are for and when she takes them.

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Age at interview: 65
Sex: Female
Age at diagnosis: 59
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Well the ones I can take on a morning there's one is a diuretic, to reduce my water, then there's two heart pills and one is an aspirin, a dispersible aspirin but I don't dissolve it in water, I find I can take it. And at tea time two of them are taken for the heart failure and two are for me arthritis. Then at supper time, one is for migraine, Sanomigran I forgotten to mention that one, and the other one is for my cholesterol. So I do know what they're all for.
 

Reads out his medication from a list and works out that he takes 15 pills a day.

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Age at interview: 84
Sex: Male
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Yeah, well, you may know what they're for, I'm not altogether sure I do... but I take frusemide... that's for the heart, to sort of relieve my water. Lisinipril, I think that's for the heart; isosorbide mononitrate - I've got no idea what that's for. Thyroxine -  two lots of that thyroxine, that would be for the thyroid. Glibenclamide, that's for the [diabetes].  Amiodarone - I don't know what that's for - got no idea these days...amiodarone... Then I take an aspirin, and then at night cimetidine for the stomach ulcer. 

Ok and what do you take in the day for your diabetes?  

Well the glibenclamide wouldn't it?  I take two of those in the morning and two at lunchtime.

Do you know off hand how many pills that is in a day you're taking?

I can tell you [laughs]... 3, 4, 5, 6, 8, 9, 10,11... and at lunchtime three, and at night one, so that's 15 isn't it?  [laughs].

Quite a lot to remember isn't it?  

Well that's why they're written down isn't it?  I, I can remember.

Incorporating medicine taking into normal daily routines was a common strategy, for example taking their pills with meals or as part of their getting up or going to bed routine. One man said having to take tablets in the morning with food had forced him to eat breakfast, which he hadn’t used to do. Some people took medicines only in the morning and at night, or just in the morning. People taking warfarin might have to take a different dose on different days of the week.

 

Paul and his wife use their breakfast and evening meal as reminders to take their medicines.

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Age at interview: 68
Sex: Male
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Because of the fatigue it’s been suggested, or it was suggested quite a few years ago now that I split the bisoprolol and lisinopril at either ends of the day. So I have the bisoprolol first thing in the morning; my wife and I have a cup of tea first thing in the morning, so I’ve got them beside the bed and it’s just part of the routine to take the pill. And the other one I take in the evening with the evening meal, so that’s the catalyst which just reminds me that I need to take the pills. Plus the fact that my wife’s on pills as well for her diabetes, so we take our pills together. 
People used various strategies for knowing which medicine to take when, such as keeping a written list or putting out their pills ready for each time of day in the compartments of a dosette box. Some had dosette boxes made up for them by a pharmacist. Pill boxes were generally recommended by those who used them, and a man who said he had memory problems said they were a good idea.
 

Because of his bad memory he puts his medication into pill boxes and takes them 3x a day.

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Age at interview: 49
Sex: Male
Age at diagnosis: 46
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My drug dosage is based on three applications a day; a morning, a lunchtime and an evening dosage. I have a little ritual on a Sunday where I sit down with my three weekly boxes, I have three boxes divided into the days of the week which anybody can buy from the pharmacist and I have found them most useful because one of the problems I've got with this condition (I don't know if it's the condition or just a problem I've got), but I have a terrible memory, incredibly bad memory so I have these three boxes which I purchased, and I sit every Sunday morning and put all the relevant tablets into the relevant boxes, so I take out these 9 or 11 in the morning, only three at lunchtime now because they've upped the dosage to a point where - what tends to happen sometimes is for example if I'm taking isosorbide mononitrate 60 milligrams, the tablets only come in 20 milligram dosage so you end up taking three at lunchtime, three in the morning, well now they actually do a 60 milligram one so I only take one. So that's my lunchtime ones, and in the evening I take another three for cholesterol and all sorts of  bits and pieces, and that's basically how I do it and my aide memoire is that I get up in the morning and... before I get washed and dressed, I will take my tablets. The lunchtime ones... is just routine, I don't always remember, I have to confess to that one, my lunchtime ones but I try to, and then the evening ones, well again before getting into bed, I take my evening ones. They're not too bad to remember, I do occasionally forget those as well, but not too often. I think in total there's about - because they've reduced the quantity by increasing the dosage of tablet - I'm down to about 18 a day now from about 24 or whatever it was. 

 

Rose used a box with just one compartment per day and said she knew which pills to take in the morning and which at night by their appearance.

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Age at interview: 65
Sex: Female
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Do you have any clever ways of remembering to take all those tablets at the right times? Do you ever forget?

No. [Points to dosette box]

[ah ha] Lovely. Very pretty dosette box.

Yes. And there is only one that I have to take at night, well two. There’s amitriptyline and another one I have to take at night. There’s only two I have to take at night.

Ok, the rest in the morning.

And the rest in the morning.

Yeah. So those compartments are just one per day, yeah, one compartment per day?

Yeah.

So how do you know which ones to take at night?

Because there’s only the one left in it.

Ok, so you know when you look at them, by what they look like, which ones are the morning ones and which ones are the evening ones.

Yeah. I take them all, all in the morning and just one at night. And I know which one I’ve got to take at night, so I leaves it in there.

Yeah

And my amitriptyline I take.
Other kinds of containers were sometimes used, such as special bowls, bottles or spoons, to put out batches of pills to be taken at different times of day. Some just put out the original pill packets ready. People whose dose of warfarin changed frequently took these pills straight from the packets.
 

He divides his daily quota of tablets into three batches and keeps them in separate bowls.

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Age at interview: 81
Sex: Male
Age at diagnosis: 79
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Well I've got a little bowl that I put I put them in and when I've taken the morning one, when I've taken the morning one, I then have one for 2 o'clock - just one at 2 o'clock - so I put them with a little note on the front there '2 p.m. lunch' then soon as I have that, I then put [out] my '6 p.m.' which is three, I have them, and the other six that I have, I have those in the morning anyway first thing, so I've also got a tab to make sure I've taken them right and I always cross-reference them with this booklet so to make sure that I'm getting the right tablets in the right place because when you take a number of tablets it's so very easy to forget one - miss one - so I make sure they're all in the container and then I know I've got my compliment for that particular occasion. 

Could you just tell me again how you take the pills, how you remember to take them?

Well how I take them is because I do allocate them into a small bowl from the packets, then I know I've got the complement for that particular occasion and when I've taken them, I then put out the ones for lunchtime into the bowl with a little card on the front of them, that's for 2 p.m., so that I'm not saying have I got these out for 6 o'clock or 9 o'clock in the morning so I know exactly how many I take in the container and when I take them and I do that three times a day.

 

 

Beth puts her morning pills out then replaces them with her afternoon ones, and so on.

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Age at interview: 57
Sex: Female
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I put them out as soon as I get up of a morning. I put my morning ones out, and then when I take them I put my afternoon ones out, so I know when they’re gone I’ve taken them, and then when I take those ones I’ll get my evening ones out. So it’s a case of as I take one lot I get the next lot out. And I always check the time so I know it’s four hours from now I need to take them.

It was common for men to rely on their wife to put their medicines out ready or remind them to take them. This could be because of memory loss or just because the woman assumed the role of carer 
It was common for men to rely on their wife to put their medicines out ready or remind them to take them. This could be because of memory loss or just because the woman assumed the role of carer
 

Says that his wife reminds him to take his medication every day.

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Age at interview: 81
Sex: Male
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Can I just ask you if you can remember what drugs you're on at the moment?

I'll just give them to you. What' where did I' what did I do with them?

Can you read them out for me?

I can't pronounce them! [looks down to read] Aspirin 75ml, one a day, Amiodarone, 200mg, one a day, Frusemide 40mg, one a day, and Frusemide, 20mg, one a day - they've built that up a bit - [phew.] can't pronounce that [pause] or something, potassium 25' I don't know what that is, and Formax. Formax is... I used to take that once a week, and that's because,  I had a fall and damaged my bones, but that's just for bones, kind of' strengthening up my bones. But this other one I can't even read it. [tries to read it]

Don't worry.

Sprino' no' no. lactin.

So how many tablets is that a day, that you have to remember to take? 

...[counts] one, two three' five a day, but I do take cod liver oil and these capsules, you know, but the ones I take, medicine, is five, innit? Six. [refers to wife] What's the sixth? Three in the morning, two at dinner time'

Don't worry.

Thought it was five.

I think your wife's saying to you, have you counted the aspirin in with that lot?

Yeah I said aspirin.

How do you remember to take them?

I don't, my wife does.

 

Because of his memory loss Tim relies on his wife to put his medicines out ready in a dosette box and remind him to take them.

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Age at interview: 53
Sex: Male
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My wife is the dispenser. I haven’t got a clue what I take. I take eight pills in the morning, I take two pills at lunchtime and I take three pills for my tea or at bedtime. What I take I don’t know. Honestly.

Does she ever go away and leave you to your own devices?

No I’ve never been, even if my wife’s been hospitalised, we have one of those trays with seven days of pills, and if I need a lot, but I’ve even taken the bag of pills into the hospital and my wife sorts the pills out in the hospital. So no, we used to have a list, we had a list in the box that kept all the pills, and that had a list of all my pills, when I should be taking them. But the list has disappeared, so I can’t do it anymore. As well as that I’d forget to do it.

So you’re completely dependent on your wife to help with your medication?

Yeah and it’s, it is annoying.
 

Ted’s wife sorts out the whole family’s medicines each day into small glasses; he says could manage on his own if he had to.

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Age at interview: 78
Sex: Male
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My wife does, looks after the tablets. I mean I have quite a few. She has quite a few. My son has to have two or three blood pressure ones or something it is. So my wife keeps them in a box and then she, once a day, she puts them into glasses like that, which we have to take, and that’s how we work it. As far as the names go I haven’t got a clue what they’re called. But she’s got a prescription. She’ll show you which, they’ll have all the names on them.

Yeah. So does, is your wife always here or does she ever leave you to your own devices?

She’s nearly always here. If she wants to go anywhere I usually drive her. She can drive but she don’t like driving. She says, “I’m frightened to death of that car.” She says [laughs].

So do you think you could manage your tablets on your own if you had to?

I could if I had to, yes. I mean if I had to I would get a prescription and I mean I would do, I would put them out like my wife does and do them. But it’s easier to take them in one place and for them all to be done in one go. Which is what we do. I mean without my medical assistant there [laughs].
Other men said they preferred to do it themselves. A man who took 15 pills a day, set alarm clocks to go off at different times to remind him to take his pills.
 

He has an alarm system set up to remind him to take his medication.

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Age at interview: 49
Sex: Male
Age at diagnosis: 44
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I take 7 in the morning, 4 at lunchtime, 3 at 6 o'clock, and I have one going to bed.

How do you remember them?

Alarms, I've got two alarms in here, up on top of the cupboard there, one goes off at 4 o'clock - that's my frusemide tablets. That one goes off at 6 o'clock - that's my warfarin and my heart tablet. The other ones I just take when I go to bed. When I get up first thing in the morning, 8 o'clock, half past 8, I've got to take my morning dose which is, that's the main dose, I take that, and it's 7 there in the morning. So it's alarms everywhere! When we're out one of the kids usually sets their watches for me, they've got a watch that's got an alarm on it so they set the alarm on that.  

Sometimes you forget, I mean I must admit it's not the first time I've missed it out, but you've just got to take the worry out and let the hospital know that you missed the dose out. It's only happened twice so that's not bad.

Have you ever felt like not taking them?

Oh quite often, every day you feel like, 'Do I really need to take this?' You're restricted. You go on holiday, like we go down to the wife's mother's and I've got to take a box with tablets, lotions, sun cream - you name it, just for myself because you know - you can't do without them.  

We went to Ibiza last year for the first time, I still had to explain to Customs why had a box of tablets and what they were for. I had the list with me so they could read that, and in this respect you do feel like, 'I'm fed up with this' you've got to go home and get the tablets at 6 o'clock and take them you know. 

People commonly said that taking their medicines had become a part of their daily routine or a habit. Most people kept their pills in a special place - often by their bed - and some carried extra tablets around with them in the day. While some said they had never forgotten to take their pills, others said it was not always easy to remember to take all their medicines at the correct time and they had occasionally forgotten. Mike said he had once taken three beta blocker tablets instead of his ACE inhibitor when he was distracted by talking to his wife. He phoned his GP and was advised to stay in bed that day. Some people said that remembering to take medicines in the middle of the day was the most difficult if they were busy or away from home.
 

Peter has occasionally forgotten to take his medicines at the right time and has sometimes taken his morning ones instead of the evening ones by mistake.

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Age at interview: 67
Sex: Male
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The only way I can organise myself is to use what my wife calls a weekly dosette box. So you’ve got, you’ve got containers for all, for days of the week and each container has got four compartments, should you need to take medicine four times a day. And if I don’t fill that up with medication every Saturday morning, I’m lost. And if I’m running out of stuff I just ring the local chemist and they do a repeat prescription for me, which comes through by the end of the following week.

So have you ever forgotten to take anything when you should have done?

Occasionally. Occasionally. And the other mistake I’ve made is to pick up the dosette box and hold it upside down and taken the morning tablets in the evening or vice versa.
 

He doesn't want taking pills to take over his life.

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Age at interview: 74
Sex: Male
Age at diagnosis: 73
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I very rarely, but I have, forgotten to take my pills in the morning or the night... never at night, no. In the morning something happens, somebody phones me up and the day starts and I miss a chunk out of my life, if you know what I mean. And I can usually catch up later on in the day, if I remember. If I don't remember, I don't remember until I'm ready to take my evening pills, in which I would take my morning instead and skip the evening ones. 

But to try and stop my life mid-day, at lunchtime, to remember to take a third lot of pills, if you like, is beyond me. It really upsets my whole day and I can't get into a rhythm. I very rarely, as I say, forget my pills in the morning or night and that's part of my method.  But just to stop the day and take my water pills mid-day is an intrusion on my life because I'm doing things. You know, the day kind of hots up about mid-day! [laughs]  You're either out shopping or, I don't know, it just doesn't work. It may sound very badly organised but that's the way life is. 

...It just doesn't fit a style. I mean, what it means is that to a doctor, all right take them at mid-day and it'll solve your problems, but it doesn't, it creates problems for me. It means that my whole life is a pill-taking exercise, which I don't want it to be! It should be fitted in to my life. You can understand that? 

 

If Roger forgets to take his tablets he takes them later on.

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Age at interview: 68
Sex: Male
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So, lots of people find it difficult to remember to take them. Have you ever forgotten to take them?

Occasionally. Then I start panicking. 

Do you?

Yeah, ‘cos I don’t know what’s going to happen if I don’t take them, that’s the thing, if I haven’t taken them then I’ve always taken them later. If I forget to do it in the morning then I’ll, like yesterday, I should have took three of them at lunchtime or ten o'clock. Only I didn’t take them, I thought, ‘Oh damn, I haven’t taken the tablets’. So I had to take them at dinnertime. Don’t think it made any difference but well you shouldn’t double the dose if you miss out, so I did, instead of taking the other ones at teatime, what I do, I take two in the morning and two of them, evening meal, at night. I left it till just before I go to bed, just to sort of equal out the time between so then and try and get back on track the next day. It was all right. Yeah, but…
Remembering to reorder medicines from the pharmacy at the right time could also be a problem. One man said he once went five days without his medicines when on holiday after his suitcase got lost in transit. He has since learned to pack his medicines in his hand luggage.
 

He missed two days’ worth of medicines when he ran out.

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Age at interview: 46
Sex: Male
Age at diagnosis: 45
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I mean I’ve had a situation where I’ve had to miss two days because I ran out, because my doctor my GP, it’s like 24 hours waiting. And you know two days without it, you know what I mean? I’m thinking how I could feel the pressure coming back so I’m saying, ‘No’. Those two days you’re just in zombo, you know you just don’t want to do anything because you’re frightened that if you go out there you’re going to collapse.




Last reviewed April 2016.
Last updated April 2016.

 

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