In these interviews we were wanted to learn more about their day to day lives, who was involved in their care and what they spent their time doing. In pre-discovery some of these interviews focussed on end of life preferences too as that had been an initial focus of our work, though changed through discovery.
My bipolar is barely talked about. My heart stuff is the focus of conversations and people forget about my mental health which I have lived with for years and years. People think all old people are losing the plot don’t they? It’s like my mental health now I’m older is just lumped into being part of ageing or people think if you are old with mental health problems that you have dementia. That’s not the case for me. I’m managing two conditions all of the time and of course they affect each other.
I still have to manage my mental health and am on medication for it that I’ve been taking for years. Now I have really bad anxiety too. That has rocketed right up. I’ve always been a bit anxious but now it’s always there really. Sometimes it stops me from going and eating with everyone, leaving this room really. Some days I want to just stay in here and not see anybody. Some of the things that I used to do that would make me feel better, you know mentally better, I can’t do any more because of my heart. Exercise and stuff. I have to take things easy now and that can really affect my moods too.
It’s my birthday next week and I know that none of my family will come and visit me. We haven’t really talked for years, since me and my Sister fell out. My nephew comes to visit once in while if he is working in the area but he hasn’t been now for months and months. So yeah, I’m on my own really family-wise. There are some people here that I get on okay with and that I talk to.
We don’t talk about that stuff though, about the end. Nobody has ever talked about it to me - not one person across all of my care. I think the first person that ever brought it up with me was the manager when I moved in here. She asked me if I had sorted out all my affairs or wanted her to make copies of any documents that I wanted her to keep. I told her I didn’t know where to start. It makes me anxious to think about all that and I am anxious enough already! Anxiety is a real problem for me.
If something feels important or weighty, like a conversation I’m having with my cardiologist, I find it hard to concentrate. My heart starts beating all over the place. I panic when I am listening and then I don't hear it all, so I need a better way to record conversations or make sure I remember to have someone with me. That’s not always possible though it is? If you haven’t got a partner or family.
There is a Community Centre upstairs and they do arts and crafts and stuff. I have been up a few times to use the computers but now I have this laptop. I’ve got my own Facebook page for Lonnie Donnegan. I have over 2000 followers! It’s good for keeping my mind going. My anxiety means sometimes I can’t spell things and I am not very good at expressing myself with words but I can post his songs and yeah it does mean I feel more connected to people. I don’t know any of these people really but we share a love of Lonnie. It’s good for me cause I can do this sitting here in my room. It doesn’t mean I use up too much energy and I don’t feel anxious doing this.
There are so many things going into the process of having to catch a breath. It’s hard to explain to people. Some days I have to stop to breathe... stop to breathe... stop to breathe… as I walk.
There are good days and bad days. Now I have mostly bad days. I get up at 5am and go to bed about 5pm. Each day I am lucky if I can get dressed, brush my teeth, get washed.
Maybe have some toast. If I am lucky I might wash a few dishes. Every day I try and do something. Yesterday I ironed two shirts. Maybe if I am lucky I can make dinner…. In 12 hours, those things would be an achievement.
One of the hardest things is sometimes I have to push my husband away when he is trying to comfort me because I can’t breathe. I can’t hold him.
I can’t talk to my best friend for long on the phone or my sister because I can’t get the breath to do it.
Lung function is no longer a function, it is a job. I have to make it my job to breathe. I am not going to sit looking at the wall all day reminding myself to breathe. I have to try and have some quality of life.
I have been able to get my affairs in order and say goodbye to people and lots of people don’t get that chance. Nobody likes to talk about death do they? But I know I have to talk about it,I have to deal with it. I have to be realistic. We’ve all had to talk about it, my husband and my sons. We’ve all had to talk about it so that we can be prepared. I think that people need to do that. You can’t close your eyes, it’s not going to go away, and it’s never going to get better. You are just going to get worse and worse and worse and you just have to prepare for that.
So yes, I have all the final bit sorted now. It really gives me peace of mind. I don’t want my sons to worry about that. I mean it’s going to come, the end, and I like to know that I have everything in order.
It’s not just about tablets, it about self-worth. You get a bit of self-worth when you come here to the Hospice because you do stuff. You think, actually, I can still do something. I’m worried about when I can no longer come in here and do the things I do with people. It’s getting harder for me to leave the house even with help. I am really lucky to have the support of so much family and I often think about people with my condition who just don’t.
Being known is really important. It helps for people noticing patterns too. You loose that when they keep chopping and changing the care. I miss having the same GP see me or the same specialist nurse.
I'm working in partnership with a team rather than being a passive patient if you like and feeling, feeling that you can only have things done to you, rather than being part of the decision making process and fully informed, which we did very much feel when I went and had the liver section.
So it's all a waiting game. I’m learning that it's not so much what is said today about your condition, there are things happening all the time, there are developments going on all the time and things change all the time and it's keeping yourself abreast of those developments and making, making choices based on your information. I often think there is a mismatch between what people have heard and what I have said. I have started to ask to see what they document now.
Information is power and I mean it can be that, you're asking yourself to do those sort of things, find out those sort of things at your most vulnerable and most weakest time in your life and a time that you're sort of absolutely strung out in fear and foreboding but it can help so much I think because you know it does give you a feeling of, of autonomy to some degree and it's making those choices. I know that's not possible for everybody.
And of course everybody seems to be an expert on what you should be doing yet I'm the expert in my condition.
I like the doctor to be straight with me about what she does know and what she can't possibly know. Often people expect doctors to know what is going to happen, but often they only take educated guesses and can often be quite wrong about what the future holds, and especially how long it is. It can change too, your prognosis.
I do get down. I don’t like being so dependent on others. I feel like I have to manage my anxiety a lot and also my low feelings.
I’m always tired, not the kind of tired that sleep can do anything for. You have to push yourself. Though I do sleep really badly too sometimes and that makes me really irritable. So it’s hard to stay calm to think clearly about important stuff when you sometimes just feel panic or you just feel an unbelievable exhaustion.
I have a lot of fear sometimes. You are always having to learn something new, you worry about your money running out, your established relationships change and then there are the medical fears of incontinence and deterioration. That’s on a bad day when I let those thoughts overwhelm me. On a better day it doesn't stop you from doing the things you want to do; you just have to learn what you can do, and how you can do and learn the things you can't, so that you don't just give up.
I’ve been watching what I eat. The biggest struggle I’m having since my surgery is quitting smoking. I know I need to. I didn’t smoke for three to four weeks after the surgery, but I just started again and I shouldn’t have. I’ve also been going to cardiac rehab three times a week for 12 weeks. I used exercise equipment, like recumbent cross trainers, stationary bikes, and weights. While I exercised, my heart was being monitored. I also spoke with a dietitian. This has given me a bit of a plan to follow, you know, to try and look after myself.
My back can limit my ability to get the exercise I need sometimes though. My heart is the main issue but at my age of course your body is doing, or actually not doing, lots of the things it used to.
“Please don’t make an appointment unless it is absolutely necessary.” Well, what do you know is absolutely necessary? I have been rushed into hospital because I have left it too long, because I won’t bother them. I don't want to be a nuisance. You are more conscious of resources because you are older and you become so conscious of what you are costing.
I have been told before that I had ten days to live, but I survived that. I don’t care what time I have left, I don’t ask that any more. I care about quality of life. Because I don’t have a crystal ball – and I don’t want that crystal ball – I’ve learnt to just ‘get on with it.’ I just have to live one day at a time.
I’m much more comfortable at home now. I have my oxygen and my wheelchair here at home and quite a few people come to visit each day, especially since my operation. They are keeping an eye on me! We have had so many different people coming and going that it can sometimes feel quite intrusive. I wish it was the same people coming in and out so at least we could build a relationship up with them.
If you know the people who are coming, you've got a trust in them, you've built that trust and it's those people you want to see coming through your door because you know they're going to help. I need to know who is coming to visit me and when so that I have some prior knowledge which gives me a sense of me planning my day rather than my day doing something to me.
Everybody's got a different belief about life and so forth and I get a great deal of comfort from having been with other people who've been ill and died because they've been utterly practical. When you're in this sort of situation there's nowhere to go. It's no good sort of backing off and thinking, 'It isn't going to happen to me', because it is. So it's, the best way is, I feel, is to come to terms with the illness and hopefully that it won't be too painful.I have a lot of fear sometimes. You are always having to learn something new, you worry about your money running out, your established relationships change and then there are the medical fears of incontinence and deterioration. That’s on a bad day when I let those thoughts overwhelm me. On a better day it doesn't stop you from doing the things you want to do; you just have to learn what you can do, and how you can do and learn the things you can't, so that you don't just give up.
I learned a long time ago that, that I have a certain amount of energy and to expend that energy on anger is just a waste of time because all, it doesn't, it doesn't achieve anything - all it does is make you more tired and more frustrated. Being ill is very tiring, being in pain and I'm in pain all the time, is very tiring. So I have to try and channel my energy into positive things.
Well I haven't asked them specifically how many years I could expect and I'm not ducking that question but, do you know, I believe in adopting a very positive approach to the whole thing. And I don't really need to be told that it's one or two years. I don't think I would welcome that, you know. To know that, at the most, it may be five years downstream doesn't bother me a great deal but on the other hand, when I say it doesn't bother me I mean it does, there's no doubt about that. We all want to go on living as long as possible, but I can accept that, and I believe my family can but I'm not too sure I want to be told that it's a year away.
I recognise the time will come when somebody will be saying to me, ' Well we can't really do anything for you now', and I'll have to start thinking about am I going to stay at home or am I going to go into a hospice, well when that time comes I'm pretty confident I can deal with that and cope with it okay. But I guess what it comes down to is I don't want to talk in those terms until I've got to.
One of the things I've found that whoever you're talking to, whether it's a GP, a consultant or nurse, they're very willing to explain things. I think that's a big change that's come about in recent years. The medical profession realises that it is good, if the person wants it, to be as open as possible. Saying that, at the moment I do not want to know anything, I don’t want the burden of it - I just want to be told how to manage things. I go through phases depending on how well I am. When I am having bad days I can’t think of much at all.
I don’t have a lot of stamina. I can’t go for walks any more as much as I would like to. I have to take my time going downstairs and especially going upstairs. I can’t do the things I used to love to do ...swim, motorbiking, so apart from reading I can’t do anything. Anything to do with being physical. Life gets very enclosed, very narrowed down. It is hard to stay positive when you feel everything is shrinking around you.
I think communication between services – that’s something that we found to be pretty disjointed in our case. We have to keep repeating ourselves.. Sometimes I wish I could just press a button on my phone and it would talk for me, especially when I am feeling really unwell.
Somedays I feel like I can take on the world and things aren’t that bad and there are other days that no matter how much I seem to give myself treatments I just can’t seem to catch my breath.
It’s like somebody has put duct tape over your mouth and your nose and just cut a little hole and you are breathing through a straw.
Some days all I want to do is breathe.
Something as simple as getting dressed can wear me out. It can take me as long as 30 mins just to put on a tshirt and jeans. It’s very hard for me to go out and have a good time. I am always afraid that if I laugh I will go into a coughing fit. I miss out on a lot of what I used to do. Any kind of exertion can make me very tired.
I measure my decline by what I can no longer do. There are times I can cook a meal and there are times when I can’t. There is no real consistency or pattern.
I use a nebuliser twice a day, oxygen whenever I am going to do anything exerting. Medication I have to do 4 times in the morning and 4 times at night.
Sometimes a day is all about just shortness of breath, a chronic cough and lots of wheezing. That’s all I can remember about my days sometimes. It all just blurs into that.
It slows me down but I am not going to let it get me down. You have to relearn everything that you loved to do. The biggest thing I have learnt is that you have to keep trying to push yourself and keep some kind of quality of life. My family are great at supporting me and helping me out, both emotionally and physically.
Today might feel different to tomorrow. I take each day one by one and what I feel like and how motivated I am changes each day too. I have to live differently and adjust things all the time. Who I can see and for how long, what I wear, new medications, different things to remember all the time.
I’ve got some lovely carers and nurses but health isn't just that my lungs aren't working today, it is also how I am feeling. Sometimes it feels like people talk to my illness, not to me. I need to reclaim being a person again.
It isn’t always a bad thing to have to repeat everything to different people involved in my care. It means that I feel listened to and that each individual’s judgement is being brought to the situation.
Mornings are the worst for me. From the moment I sit up on the edge of the bed breathing is hard, really hard and it can drain me of energy very quickly. Simple things that before required no thought process whatsoever. I shuffle a lot, to move slowly. I never look in the mirror anymore.
My nerves are more on edge. I have less tolerance for things. I want to be on my own a lot. I need peace and quiet to keep concentrating on breathing. I inhale my medication which makes me cough. I have my daily ritual of doing this.
I have to take constant breaks.
All tasks that were once easy are now so difficult. I can’t walk many paces without getting really breathless. I just feel a bit kaput. It’s had a big impact on my well being. If there is a big gradient when I am walking there is no way I can make it.
I have to motivate myself to get up every day. You get self worth by doing stuff don’t you, so I know I have to do that.
Citizens Advice, my doctor and the social worker all suggested sheltered housing because I was shutting myself off from life. I find it hard to dust or clean around, I get absolutely shattered. That gets me down when I feel l can’t keep the place clean all the time.
People ask me about planning but I don’t know where to start, I don’t know where to start. I don’t know what to do. I was told I could appoint a solicitor to do it. But how do you separate what you want to give to whom? Can you see how anxious it makes me just to start thinking about it?