Sleep problems can be an issue for people living with a terminal illness, though not everyone is affected. Sleep problems can be distressing for you and the people who are close to you. There are practical things you can do to encourage good quality sleep.
What are sleep problems?
Sleep is a complex function and is essential for our wellbeing. The pattern of when we wake and when we sleep is part of the body’s overall daily rhythm. This sets the pattern for other essential functions including controlling temperature and hormone levels.
Sleep problems can affect anyone. But if you have a terminal illness, you are more likely to have issues sleeping. There are different sleep problems you might experience:
- Insomnia. This is difficulty getting to sleep or staying asleep, or not feeling rested after sleep. This means you might feel tired during the day. And you might feel as though you cannot function as you would if you’d slept better.
- Disorders of the sleep-wake cycle. This can happen when your sleep at night is disrupted. It could be caused by a noisy environment. Or it could be due to distressing symptoms or worries. Disrupted sleep at night can then mean you’re more tired during the day. Reduced activity in the daytime then contributes to not feeling sleepy at night and a cycle of disturbed sleep.
- Excessive daytime sleepiness. This is when you have difficulty staying awake during the day and may fall asleep or become drowsy. This is different to the tiredness and fatigue which can also affect people with a terminal illness.
The quality and quantity of sleep can have a significant impact on your wellbeing and quality of life. Being tired and unable to sleep can make physical symptoms and difficult emotions harder to manage. Difficulty sleeping can also lead to low mood and anxiety.
What causes sleep problems?
There are many reasons why you might have sleep problems or a change in your sleep patterns. There’s often more than one contributing factor.
Causes include:
- uncontrolled pain
- feeling sick and being sick
- restless legs syndrome – a common condition of the nervous system that causes an overwhelming urge to move the legs and is associated with many illnesses, including anaemia and chronic kidney disease
- having to get up to go to the toilet or being incontinent
- depression
- anxiety, worries, spiritual concerns and distress
- reduced activity during the day
- delirium
- medication, such as steroids and some antidepressants
- respiratory problems, for example breathlessness, cough or obstructive sleep apnoea
- taking caffeine, nicotine or alcohol
- withdrawal from medicines or substances, such as nicotine or alcohol other uncontrolled symptoms, such as sweating and itch
- environmental conditions, such as noise and light levels, and visitors staying late.
You might have had difficulty sleeping before you were diagnosed with a terminal illness. Or these might be new issues. If you have questions or concerns about what’s causing your sleep problems, speak to a healthcare professional such as your GP or district nurse.
What can I do to help sleep problems?
There are practical things you can do to get good quality sleep. If you are concerned about uncontrolled symptoms, or if simple measures are not improving sleep, speak to your GP or specialist nurse. They can arrange further assessment and treatment. You might also benefit from emotional support and relaxation therapies.
Practical tips
You can start by thinking about changes you’d like to make. The overall aim should be to improve your quality of life and make you as comfortable as possible.
The following tips may help.
What to try during the day:
- Go to bed and get up around the same times each day.
- If possible, avoid napping during the day.
- If you can, try some physical activity during the day.
Managing symptoms:
- Keep yourself comfortable, for example, try to control pain and other symptoms.
- Speak to your GP or specialist nurse if you’re concerned about any symptoms.
- If you’re living at home, you can ask for a referral to a district nurse for a review of your mattress. Speak to a healthcare professional about this for more information.
- If you’re spending large amounts of time in bed and you find it hard to change your position, regular repositioning by care staff can help to keep you comfortable. This may mean you’re better able to rest and sleep.
Preparing for bed:
- Try things to help you to feel relaxed before going to bed. Listening to music or relaxation techniques such as deep breathing might help. If you’re able to have a bath, some people find this can be helpful too.
- Avoid caffeine, nicotine or alcohol before you go to bed. Some people will be able to drink tea and coffee earlier in the day without it affecting their sleep, but it’s best to avoid it in the evenings.
- Ask visitors not to stay too late. If you find it tiring having visitors, then you may need to ask them to leave. You might find it difficult to sleep if there are other people in the room. Be mindful of this and let the people important to you know what works for you.
Sleeping environment:
- Set up your sleeping environment to be quiet, calm and at a comfortable temperature. If you need help to do this, ask someone close to you or a healthcare professional if they can help.
- Use earplugs and eye masks if noise and light levels could be disruptive.
- Avoid electronic devices such as tablets and smartphones before wanting to sleep.
- If you cannot sleep because of worries and concerns, it may help to have a pen and paper beside your bed so you can write things down. You can then deal with them in the morning.
Talking and wellbeing
You might find it helpful to talk to someone you trust about any worries or fears that are keeping you awake. You might also benefit from talking to a professional such as a psychologist, counsellor, faith leader or spiritual advisor. Cognitive behavioural therapy (CBT) can be effective too. You may be able to access these services from your local hospice or through your GP.
There are also a number of free sleep apps and podcasts that are designed to help people fall asleep.
Wellbeing therapies, such as aromatherapy, massage or hypnotherapy, might also be helpful.
Medical management
If you think that you might need medication to help you manage sleep problems, speak to your GP, district nurse or specialist nurse. There are different ways these professionals can help. They can:
- review any medicines, such as steroids, that might be contributing to your sleep problems
- make sure that any symptoms, which could be contributing to your sleep problems, are being managed as well as possible
- arrange further assessment or prescribe medicines.
Medicines might include:
- short-acting benzodiazepines such as lorazepam or temazepam
- hypnotics such as zopiclone or zolpidem.
Information for family, friends and carers
Sometimes people who have an altered sleep-wake cycle struggle to get back into a normal rhythm of sleeping during the night and being awake during the day. They may prefer to sleep when they feel tired, regardless of the time of day. This can be difficult for you as their family and friends, as it means adjusting to a new pattern. It might help to find new times to spend with the person that work with when they choose to sleep. Ask the person’s healthcare team for support with managing their sleep problems.
Sleep problems can also affect you as you care for someone with a terminal illness. You might be caring for someone overnight which will disrupt your sleep and could affect you during the day. You may also have difficulty sleeping due to stress or worries about the person you’re caring for. Sleep problems are associated with depression in carers.
Sleep changes towards the end of life
Towards the end of life, the person you’re caring for might sleep more and become drowsy. This can make it more difficult to communicate with them. This is one of many signs that someone might be in their last days or hours of life. But, not everyone will experience this.
You can help by talking to them throughout the day and letting them know you’re close by. They may still be able to hear what is said, so it can be comforting if you carry on talking to them. Remember to not say anything around them that you would not want the person to hear.
Management of the person’s sleep problems will change at this stage. This is because they may not feel able to be active, or they might find it more difficult to avoid sleeping during the day. The aim will be to keep the person as comfortable as possible. This might involve managing symptoms like pain or creating a relaxing sleeping environment.
If you have any questions or concerns about someone’s sleeping habits towards the end of life, contact their GP or district nurse.