We talked to older people (aged 65+) about their experiences of sleep when bereaved or while caring for a loved one. Caring could be for a relative they live with, or who lives elsewhere. Some were professional carers. In all cases, their caring roles could affect their sleep. Sleep continues to be affected when a loved one has died, and for some time afterwards.
Beareavement
Many people we spoke to had been bereaved by the death of someone close to them. Sometimes this was a sudden bereavement and could impact on sleep. People said they had great difficulty getting to sleep, as well as waking up a lot in the night with flashbacks of what had happened.
Some people went to the doctor or chemist to get sleeping tablets. Others dealt with it as best they could without medication and hoped that their sleep would eventually return to normal.
Her husband's illness and subsequent death led Dessie to have many sleepless nights as she lay...
Her husband's illness and subsequent death led Dessie to have many sleepless nights as she lay...
Age at interview: 73
Sex: Female
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Well when my husband wasn’t sleeping very well and he got all his medication tablets you see and I think he understood that he couldn’t take anything else, so he thought he would try Nytol because they are only a herbal. And he tried them and they worked for him.
So he wasn’t sleeping well either and he tried them?
And he tried them and they worked for him.
So he wasn’t sleeping well either?
No.
And that is what prompted you to try them as well?
Yes. yes. But not until after he died. I think the trauma of having somebody die and going through all that bereavement and grief procedure I think that does keep you awake, and whether your body gets into that pattern then I think you know, this is okay, I can be awake when it isn’t really.
So you noticed a change?
Yes, really immediately he … it all started to happen badly. Then you are lying awake thinking well what’s going to happen, how is he going to be and…
Thinking about the future?
That is right yes.
Being a carer
In some instances, people had been a carer for the person who had died, and this was particularly distressing for them. Being a carer may have meant being up a lot in the night for various reasons. People felt physically tired from being a carer but it was also emotionally and mentally tiring to have someone close to them so ill.
Robert used to dread night-time because he knew he would be up several times and he was already...
Robert used to dread night-time because he knew he would be up several times and he was already...
Age at interview: 77
Sex: Male
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But even in those times, because she would still have a relatively good night’s sleep, I was sleeping well. It was when she had the last major problem and radiotherapy which induced, and the steroid she took, she had to take a lot of steroids, it caused her to lose her hair, and they also brought on this type II diabetes, which mean since we didn’t know what was going on to start with at one time, six times a night I would get up to go to the toilet, and waking, waking all the rest of the time, and in fact when we got that under control it would probably go down to three times a night. And then it went up again after Christmas. It was only two or three times a night but each time would take half an hour literally to get her up there or to get her onto the commode and so I used to dread nights.
You must have done?
I used to absolutely dread nights and in retrospect I can see how I was sailing close to the limit of my own endurance and eventually I couldn’t even move her in the bed and that’s when we had to call in the help from the hospice, and that was just two days away from her death then.
Dessie used to get up with her husband, who was ill with cancer, for a cup of tea in the middle...
Dessie used to get up with her husband, who was ill with cancer, for a cup of tea in the middle...
Age at interview: 73
Sex: Female
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When I have a good night’s sleep I think oh that was absolutely wonderful. Why can’t that happen every night. Is it because I am getting older I don’t get eight hours or what.
Did you use to have eight hours?
Oh yes, yes.
And when do you think it started to change?
I think it started to change when my husband started to become poorly. And he would be awake a lot in the night and I would get up and make a cup of tea for us.
How long was he poorly for?
Actually he was poorly for about three or four years, but he was only really very poorly for the last year of his life. He had cancer.
I see, you used to care for him?
Well I am not a very good carer. I am a hopeless nurse but…
Why do you say that?
He used to say would death be any easier! (laughter)
He had a good sense of humour?
Yes. I am a hopeless nurse. I lose patience with people. If they have got a broken leg or something like that, you can actually see it and you know how long the healing is going to be, but when somebody says 'I am not well today' and I think 'oh gosh what can I do about this'?
So you used to make cups of tea in the night?
That is right yet. And get up and we had a great big kitchen, we lived in the [country] it was a big cottage and we had a great big kitchen and we used to go down and it had two easy chairs in the kitchen so the dog was in between us in the basket so we could just stay up all night really.
So you used to come down and sit up all night?
Hm.
So he couldn’t sleep?
No.
And that used to wake you up?
That’s right.
Did he wake up did he, or did you just wake up, were you aware of him being…?
I was just awake and aware of him being awake, and he’d try and creep downstairs sometimes but you are still aware of it aren’t you.
So you came down and joined him?
So I would come down and join him and have a little chat about this and that and that is all I am good at as far as nursing goes!
Robert compared his constant watching and caring for his wife at night during the latter stages...
Robert compared his constant watching and caring for his wife at night during the latter stages...
Age at interview: 77
Sex: Male
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Consequently I was sleeping here and she would get up, and she had diabetes as well, induced by this. And the first time, at one stage I got up nine times in one night, but she could walk and she had a little toilet just through that door and I could get her there and personally bring her back again. After a while we had to go on to the commode which was in here. And then after that the next stage when we got her diabetes a bit sorted out she would still get up three or four times. Not maybe go to the toilet but she would think she would want to and it would take me some times twenty minutes to get her up to the commode which was about there, and take her back here. And then she wouldn’t want to do anything, and so she would get back in bed for another ten minutes, and she was so weak, and she was not a fat woman but she was five foot eleven in her bare feet sort of thing and it was more then I could lift her out in the end without her helping and consequently I, although I was sleeping here I was like a sentry on guard. She would initially try and get out of bed and not wake me up, but then she couldn’t get out of bed, so any slight disturbance I was awake and active. I didn’t have to rub my eyes because I was needed, and I was like on duty for virtually 24 hours a day.
It meant just a change of pattern she didn’t like to go to sleep during the day because it interrupted her sleep at the end. I, on the other hand, would lie on my couch over there and we would listen to music or something and I would just keep nodding off and sleep half an hour. So I was, my pattern changed to trying to sleep during the day and that went on for four months.
Since her husband’s stroke five years ago, Anne’s sleep has been disturbed because she prefers to sleep in the same bed as her husband so that she can keep an eye on him during the night.
For some people, patterns of sleep that changed while they were a carer carried on long after their loved one had died. Robert slept very lightly as he had to be constantly aware of his partner’s needs. This continued after she died. Many people tried different ways to improve their sleep.
Being responsible for looking after a close family member all the time is tiring and stressful. Judy told us how she felt guilty when she could no longer continue to look after her brother who had dementia. The guilty feelings stayed with her when he was moved into a home and she continued to sleep badly.
Judy felt guilty about moving her brother to a home when she could no longer cope, and she...
Judy felt guilty about moving her brother to a home when she could no longer cope, and she...
Age at interview: 71
Sex: Female
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Did the doctor give him anything to help him sleep at all?
No, not really. He had, because you see he had dementia and he had Parkinson’s Disease as well, so he didn’t have a lot going for him bless him. So, and of course once he just, he couldn’t do anything for himself really, he couldn’t even feed himself in the end.
Yet, you said interestingly that it carried on being difficult once he had moved out into the home, what way was that?
Because I felt guilty about him being in a home, I felt I should be looking after him, and they don’t look after them, of course they can’t, they can’t, they can’t do one to one, like I was doing, you know, but yes you do feel guilty and everybody that I know that has to do it says the same, you just can’t, you carry the guilt around with you, so you go to see them as much as you can.
Oh gosh yes.
But you still felt guilty?
Of course you can’t, because they weren’t looking after him as well as I did! But then you can’t expect them to really can you, they have got lots of people to take care of, but on the whole they were quite kind to him.
So your sleep carried on then, even though he was settled in this home, because you were worried about him?
Yes, it was still pretty bad, I was still sort of wandering about in the night, and reading again, and making my eyes ache, yes, very conscious, and I found that I sometimes slept for an hour, and then woke up, and once you have woken up then, you are wide awake,
You couldn’t get back to sleep?
Yes, so I decided that perhaps I would be better off having a little doze earlier in the day, so that probably did help quite a lot.
People found there could be an impact on their sleep from loved ones with care needs who weren’t living in the same house. Their family member could be living elsewhere but in constant contact, even in the middle of the night. Peter explained how he and his wife had a stressful period in their life when both his mother-in-law and father-in-law were ill. They had to travel long distances on a regular basis to see them both until they died, and the strain of this affected their sleep.
Several people talked about the difficulty of caring for elderly parents or relatives, and how this affected their sleep, usually at a time when they had other concerns and worries such as their own health and their own children’s problems
Audrey tells how her mother, who lived in a flat on her own, would phone in the middle of the...
Audrey tells how her mother, who lived in a flat on her own, would phone in the middle of the...
Age at interview: 79
Sex: Female
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Audrey' And she was quite, not easy shall we put it that way. Then when she was in her flat as she got older, she was turned 90 when she died and she’d had lots of falls and breaks and illnesses. So we were back and forth, but I never actually nursed her. Only over Christmas when she had a urine infection and things like that. But I was always involved and she lived in [town] so I could drive, and she wouldn’t hesitate to have me go out if she wanted anything.
And we spent hours in hospitals, taking her and visiting and that.
How long ago is all of this?
Audrey' 98 she died. My Father died in 84. And she lived a long time after that.
So do you think at that period of time. It must have been worrying for you?
Audrey' Yes. It made me worry.
Could that influence how you slept then do you think?
Audrey' It probably did, I hadn’t thought about that.
John' On occasions she would phone here late at night or early in the morning and the best example is where she phoned up and when we woke up and lifted the phone, she said ‘Audrey what time is it’? And Audrey said ‘it’s 2 o’clock in the morning Mother’. And she said, ‘Oh that is the same time as my clock’.
Oh so she got disoriented and just phoned up to find out what the time was?
Audrey' Yes. She wasn’t with it and she was having an operation in hospital and she died on the operating table and they resuscitated her which was the worst thing because she really wanted to die, she didn’t want the bother and she lived for about three years after that didn’t she. But you know…
Several people we spoke to had jobs which involved them caring for others, such as working in care homes, running a care company or being a social worker. They often talked of continuing that caring role at night. People who spent their working lives caring for others said it was very difficult to switch off from caring at night. They often had trouble sleeping because they were still worried about the people they felt they were responsible for.
Val's sleeping problems started when she was running a care company for older people. She worried...
Val's sleeping problems started when she was running a care company for older people. She worried...
Age at interview: 65
Sex: Female
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I think it was just as I went into the care that it really started to go wrong.
So you noticed a change in your sleep then?
Yes.
And was it a gradual change?
Yes.
What did you start waking up in the night or …just not being able to get to sleep or both?
Waking up. Being sick. I used to be sick. Every night.
Oh goodness. What wake up and feel sick and be sick. Is that the stress?
The stress. It was a very stressful situation and because of the responsibility. It is the responsibility isn’t it. You are responsible for so many vulnerable people and I took it personally. Where I might have got carer’s going out, but before I went to bed, I rang every one of them to make sure they are working, their car hasn’t broken down.
So I wonder how many services do that now?
Not enough. So that really was, I believe, the main cause of me not sleeping to start with.
So did you think once you sold the business that everything would revert back?
I believed it would be. But it is not.
Daniel's sleep was badly affected by his job as a social worker, and even led to him having...
Daniel's sleep was badly affected by his job as a social worker, and even led to him having...
Age at interview: 78
Sex: Male
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Do you think there might be a link between what you did, and I am not sure you want to go into what you actually did?
No. I don’t mind saying generally speaking that I was in – when I started in [town] as a social worker, we did what we called generic social work and our case load, the number of cases we had were all of different groups of people that there are, you know, mental health, elderly, families, children in care, all sorts of stuff. And then it was changed, in quite a revolutionary way in [town] and I ended up doing what I really wanted to do and that was working with children and young people and doing what we called long term child care cases. And yes, there were, I wasn’t the only one but there were a number of us from time to time who went off with stress, high blood pressure related to the stress of the job. And we would be off for a month at a time, that sort of thing. And there were a number of us like that, and yes, I had some of the heaviest cases. So, that was related to my sleep at that time.
Was that the time when you had the nightmares as well?
Yes.
Okay and were you worried a lot at night and wide awake at night?
Yes, yes.
So it obviously did have an impact on you?
It was very hard to switch off. I mean to be the perfect social worker you switch off but I certainly found it hard to switch off. As time went on I got to tell myself something to get into that mode, but it wasn’t easy.
But caring didn’t only take the form of looking after someone who was unwell. Daphne’s daughter had temporarily moved back home. She had started getting up earlier than she would have liked to help her daughter get to work on time. She also noticed that she tended to go to bed later as well. She found that she was caring for her daughter’s needs and changing her sleep patterns to help with that.
Last reviewed November 2020.
Last updated November 2020.
Next review November 2023.
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