The word ‘symptom’ is used to describe one aspect of an illness. Everyone is different and although some people may experience a range of these symptoms, others may not. If someone has a serious illness, and it is not possible to provide a ‘cure’. The focus of care should be to relieve symptoms such as pain, constipation, nausea, tiredness and breathlessness. Sadly, it is not always possible to make symptoms disappear, but the goal of treatment is to reduce their impact and keep people comfortable.
As a carer, part of your role is to help recognise and help to manage these symptoms. This will depend on your relationship with the person you are caring for, how often you see them and, what you are comfortable doing.
It may help if you keep a diary of symptoms – you can then use this as a prompt when you are talking to the doctor or nurse. Common symptoms are listed below.
Many carers worry about keeping their relative comfortable and free from pain. If your relative is experiencing pain you should contact your GP or other healthcare provider, they are there to help. There are also resources available on the internet which can help to guide you. There have been great advances in treatment though it is not always possible to completely get rid of all painful symptoms.
How we manage pain varies from person to person. Here are some things you can do if your relative is experiencing pain.
You can begin by assessing the pain, the answers to these questions will help your doctor or nurse choose the appropriate treatment. You could ask questions such as:
- Where is the pain? (Sometimes it may be in more than one area).
- What does the pain feel like? (e.g. sharp, throbbing, burning).
- How long has the pain been there?
- Is this a new type of pain?
- How would you rate the pain on a scale of one-to-ten? (1 being no pain through to 10 being excruciating pain). If the answer is 7 or 8 out of ten this would be regarded as a considerable amount of pain.
- Do you feel like vomiting?
- When did you last open your bowels? (Constipation can cause pain).
Tips to help your relative manage pain.
- Ask your relative to lie on the bed or sit down.
- Ask your relative to take 10 deep breaths.
- If your relative has been provided with pain relieving medicine, and they have not had it yet today, then provide medication as directed on the packet. If your relative has already had their pain medication today and still complains of feeling in pain, contact the doctor, out of hours GP service or pharmacist for advice.
- Ask your relative to try to take their mind off the pain by reading, watching TV or listening to music.
- Offer a massage of the feet, hands or shoulders.
- If nausea or constipation is an issue, they may be contributing to the pain. It may help the situation if you can manage these symptoms (have a look at the sections on this website on nausea and constipation).
- If the discomfort has not eased after 30 minutes phone your doctor or other healthcare provider.
Concerns about giving strong medication.
Many people worry about providing strong pain relieving drugs (e.g. morphine) as they feel it may contribute to their family member's death. It is important to remember that what causes death is the underlying disease and not the drug. If you provide medication as directed it is very unlikely that it will cause the death of your relative. The doctor will carefully reduce the medication if it is causing serious side effects. However, it is important that you know about the effects of these drugs and why they are used. Ask your doctor or nurse for a leaflet explaining about pain relieving drugs or you could read this information.
Chronic Pain Ireland and NHS Choices carry lots of additional information on managing pain:
Nausea is the term used to describe when someone feels they are going to vomit when they think about or see food. Nausea can be caused by many things including the disease itself, medications, chemotherapy, radiotherapy, constipation or an imbalance in the chemicals in our bodies.
Here are some additional tips to help you manage nausea in a person you care for:
- Ensure a bowl or bucket is within easy reach in case they vomit.
- Ask how they rate the nausea on a scale of 1 to 5 (1 being ‘very little’ nausea and 5 being ‘extreme’ nausea). You can pass this information on to a healthcare professional, if necessary.
- If anti-nausea medications have been prescribed check to see if they have been taken as directed. If the prescriptions allow, give the anti-nausea medication, unless the thought of taking the medication makes your relative feel worse.
- Some people prefer not to eat or drink anything until the nausea passes, others find small amounts of food or drink helpful.
- It is best not to lie down immediately after eating, especially if a large meal has been consumed.
- Ask when your relative last moved their bowels. If it is longer than two days this may be contributing to them feeling ill and you should seek advice on constipation.
- Encourage your relative to rest. Suggest deep breathing. Play some soft music offer a foot or neck massage. If your relative feels up to it, a bath or shower may help.
- Opening a window and avoiding contact with strong smells, may be helpful.
- If nausea is not relieved within one hour, or it gets worse, phone your doctor or another healthcare provider.
Marie Curie has additonal informatoin on managing nausea: Feeling sick and vomiting
Constipation occurs when a person does not move their bowels for several days and can cause nausea, pain and tiredness. It may be caused by reduced fluid intake, limited mobility, poor diet or, it can be a direct side effect of the person’s illness. Constipation may also be a side effect of strong pain medication. In most cases constipation can be prevented.
Below are some additional tips to help you manage constipation:
- Encourage your relative to drink plenty of fluids during the day. If their appetite is good, water is a good option. If their appetite is poor, milky drinks or fruit juices may be better options.
- If your relative’s appetite is good and they are drinking well, encourage them to eat foods that are high in fibre. Good sources of fibre include fruit, vegetables and brown breads.
- A lack of physical activity can make constipation worse. If your relative is able, you should encourage them to be active and not to spend long periods in either a bed or chair. For those who are able, a short walk each day can help improve both mood and appetite as well as helping with constipation.
- If your relative is straining on the toilet it may be worth changing their seating position.
- Take note of their bowel movements: are they hard, soft, small or liquid? It may be helpful to share this information with a healthcare professional.
- Keep a record of when they have bowel movements.
- If your relative is taking strong pain killers (such as morphine) talk to your doctor to ensure that the correct laxatives are also being prescribed.
- There are many natural remedies for constipation that can be used in conjunction with prescribed medication. If constipation is an issue for your relative ask your doctor or nurse for treatments that will not impact on their medication.
- If your relative does not have a bowel movement for two days, discuss this with your doctor or nurse who may set up a specific ‘plan’ to help your relative.
- Even if your relative is not eating very much they still need to use the toilet. Constipation can occur even when someone is off their food.
Both the NHS and Marie Curie have additional information and details on the treatment options for constipation:
We have all experienced shortness of breath through exercise or running to catch the bus. Having difficulty breathing without exercising can be a very unpleasant and worrying symptom. It is usually caused by one of a variety of things such as; lung disease, asthma, emphysema, chest infection, pressure from other body organs or, anxiety.
Your relative’s treatment will depend on their specific condition but here are some general tips that may help.
- Encourage your relative to sit in an upright position and stay with them.
- Put on a fan or open the window slightly.
- Suggest that your relative wears loose fitting clothes.
- Put on some calming music, maintain a gentle, reassuring presence, offer a foot, hand or shoulder massage.
- If medicines for breathlessness have been prescribed, make sure they have been taken as directed.
- Oxygen provided through a mask or other equipment may be prescribed by your doctor. If you notice a pattern of regular breathlessness in your relative discuss it with the doctor or nurse.
- If breathlessness is not relieved and is causing distress, phone your doctor or other healthcare professional, if available.
If you require further information click here for a guide from Marie Curie
Fatigue is very common among people with a life limiting illness. Fatigue, or extreme tiredness, can be caused by a variety of things including a lack of sleep, low levels of oxygen in the blood, poor diet, depression, the effects of treatments such as chemotherapy or radiotherapy, infection or the effects of the disease itself. Here are some strategies that may help you manage your family member’s feelings of fatigue .
- Encourage short naps during the day. No more than 20 to 30 minutes at a time.
- Encourage regular physical activity. Where possible, involve your relative in everyday activities. If your relative is able to do everyday tasks like washing, dressing and cooking you should encourage them to stay involved as it encourages movement. Being inactive during the day can lead to your relative having problems sleeping at night.
- Encourage them to eat nutritious foods and drinks.
- Plan to do more strenuous tasks (e.g. a shower or bath) when energy levels are higher and ask your relative to ‘pace’ themselves, so that they do not become exhausted.
- Encourage your relative to spend time doing activities that interest them. For example: board games, talking books, podcasts, listening to the radio and/or watching television.
- If you think that their fatigue is getting worse, speak to a healthcare professional.
If you require further information click here for a guide from Marie Curie
Delirium is common in palliative care and may be reversible or temporary. People who experience delirium have difficulty remembering new information, may have trouble concentrating, and sometimes may have difficulty telling day from night. The person with delirium may be confused and not recognise people they know, or they may become fixated on one thing or become suspicious. Sometimes delirium causes hallucinations when people see things that are not there. Delirium is usually caused by a change in brain function due to the illness or sometimes as a side-effect of medications. Delirium can be very distressing, both for the patient and their family.
Your doctor will look for the causes of the delirium and try to treat it. Sometimes your relative will be prescribed tranquilizing medicine to help them feel calm and make sure they are safe.
The best way to help your relative is to make sure you maintain eye contact with them, speak slowly and calmly and remind them of who you are, where they are and that you are there to help. If your relative is in a hospital or care home you may want to ask about being able to stay with them, often patients respond better to people who are familiar to them. Try to not have too many visitors at any one time and avoid too much stimulation like loud music or TV. It is important to encourage them to drink and remain hydrated.
Both the NHS and Marie Curie have additional information and details on the treatment options for delirium: