How do I look after myself?
Many patients feel less of a burden if they see their carers enjoying life and getting a break from their caring role. Here are some suggestions of activities which may help reduce feelings of stress. Try to share your worries or concerns; it may help to talk to a friend, a healthcare professional or you could talk to other experienced carers using a carers support line: Family Carers Ireland | Carers NI
Here are some suggestions of activities that other carers have found helpful to help them reduce stress and stay healthy.
Exercise – try to do something physical. A short walk, some light exercises or even some stretching may help. Pick something that you enjoy and will be able to do regularly. If you find it difficult to leave the house - there are lots of resources available online (try YouTube). Taking part in some exercise may help you feel better and maintain your energy levels.
Sleep - Try to get enough sleep. Limit coffee and alcohol in the evenings. If you have difficulty sleeping consider drinking herbal teas, taking a warm bath, or listen to some relaxing music. If you can’t fall asleep, get up for a little while and do something relaxing, then try to fall asleep again. If your sleep is disturbed, try to get a nap during the day. If you are finding it difficult to sleep on a regular basis, you should discuss it with a healthcare professional.
Diet - Try to eat healthily. This can be difficult, especially if your relative has lost their appetite. However, you need your strength; try to eat a balanced diet and treat yourself sometimes with the foods that you really enjoy.
Make time for yourself - Try to do something for yourself every day. Make a list of ten things you enjoy doing that would give you a break from caring; try to do one each day. It may feel selfish but it is important that you look after yourself. Looking after yourself also helps to prevent stress.
Friends – Try to remain in contact with your friends as much as possible. It is easy to become isolated when you are caring for someone. Just knowing what is going on in people’s lives can provide a welcome distraction and your friends may be able to provide emotional support to you as well.
Spirituality - If you are a religious or spiritual person you may find help in prayer, meditation or talking to a trusted spiritual adviser. If you regularly attend religious services, try to continue to do this.
Find out more
More information on caring for yourself and links to organisations who can help can be found here: Self CareBack to top
How do I try to keep going when the situation seems very uncertain?
Keeping a positive outlook while you are caring for someone whose health is declining can be difficult; you may regularly experience feelings of hope and despair. Remember that you are only human and you are doing your best. Some carers find it helpful to hope for small things even in the face of illness and loss. For example:
“I know it may be unrealistic to hope for him to be cured, but I can hope that he will have a good day today”
“I hope I can keep my sense of humour even when things are pretty bad”
“I hope she knows I’m here even though she’s not able to talk”
Support groups exist in both Northern Ireland and the Republic of Ireland to help carers share their experience and connect with people who know what you're going through.
You can find links to additional support groups in both Northern Ireland and the Republic of Ireland here:Back to top
Some people provide care with little help or support. Others have friends, relatives or neighbours who may be willing to lend a hand. You may want to consider asking for help and accepting help when it is offered. Getting some support can reduce the strain you may be feeling. Make a list of things people could do to help you such as preparing a meal, sitting with your relative, making phone calls or, doing some household chores. If someone does offer to help, you can then suggest something from the list. Remember, accepting help is a sensible way to support you in your caring role.
Jointly is an app that makes caring for someone a little easier, less stressful and a lot more organised by making communication and coordination between those who share the care as easy as a text message. You can find out more and download the app here: Jointly: Care together from anywhere
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Juggling your needs, your relatives' needs and life’s usual duties
Sometimes, it may feel as though caring has taken over your life. It’s normal to feel like this. Despite your relative’s needs, life goes on and you may find it difficult to manage your time. Try to remember that you are reacting to a great deal of change and often, you have to adapt very quickly. Here are some suggestions that other carers have used to help them feel more in control of their lives.
Prioritise tasks into lists, ‘must do’, ‘would like to do’, and ‘if I get a chance I’ll do’. Write a list of things you would like to get done today and prioritise these tasks. Don’t make the list too long and try to focus on the achievable goals.
Take one day at a time. It is normal to worry about the future but try to focus on caring one day at a time. Keep a diary. You can keep track of appointments and make a note of any concerns. You can then refer to the diary when you are discussing your relative’s care with professionals or other carers. Or you may like to keep a symptom diary to help guide your conversations with professionals.
Keep all written information about your family member in one place. For example, information about medication, healthcare professionals contact numbers, appointments. Keeping important things in one place makes them easy to find when you need them.
Get an answering machine. Answer the phone when it suits you; let people leave a message and get back to them. Get a mobile phone. A mobile phone allows you to leave the house knowing that you can be contacted if needed. Only give your mobile number to people you would be happy to be contacted by and when you are away from home and ask them not to share this further.
Make a list of friends relatives or neighbours you know you can ask for help. If you need assistance ask one of them to lend a hand – most will be only too willing to help. Family and friends can help in many ways:
- Consider asking a friend or relative to stay overnight. This may allow you to get a good night’s sleep and you may enjoy the company.
- Get someone to help with the household chores (unless you find this relaxing).
- Ask for help to prepare a nutritious meal. This will help you to eat a balanced diet and maintain your own health.
- Ask for help with answering calls. People may enquire about your relative and asking someone else to answer the phone will give you a break from repeating this information.
If caring is affecting your employment you should discuss this with your employer and see how much flexibility there may be in your job or, you may be able to take special leave.
Consider sending a regular email or text to friends and family to keep them updated. This keeps people informed without making time consuming phone calls.
It is okay to limit the number of visitors calling. You can say that your relative is tired and needs to rest or set a particular time when it suits to have people visit. You can ask people to ring before they call so that you can regulate visitors. Don’t feel you have to be the host when visitors call - ask visitors to make you a cup of tea.
Set up a rota - if you are caring with others, it may be helpful to set up a rota so that you all share the load. Find out what roles people prefer to do, for example, one person may like to provide emotional support rather than physical care. Try to allocate roles to people that they are comfortable doing.
Give yourself rewards. Caring can be exhausting, take a break, have some nice food, and do something to lift your spirits.
Remember, if things are getting on top of you, talk to a healthcare professional, or you may want to discuss things with other carers. There are online forums and helplines which allow carers to discuss things and benefit from each other’s experience.
You can find links to support groups in both Northern Ireland and the Republic of Ireland here:Back to top
Caring for your relationships
Caring for someone may lead to changes in your relationship. At times it may feel strengthened and at other times strained. You may find it difficult to talk about emotional subjects, such as your family member’s failing health or dying.
Often, we find it difficult to communicate with someone who is receiving palliative care. Try to remember that they are still your parent/sibling/partner or friend. Try to be positive and supportive and maintain the relationship you have always had. Here are some tips and suggestions that other carers have shared to help you communicate with your loved one.
- Try to be open and honest.
- Where possible, try to balance the situation with some humour.
- Ask your relative what is most important to them.
- Be sensitive to signs of a bad day or a bad mood.
- Test the waters before discussing complex topics.
- Where possible try to work at things together. Be a team – things will be easier.
- Reminiscing can be very life-affirming. These may be stories you have heard recounted many times before and may be associated with things like photographs, music or family heirlooms. Sharing important memories together can provide comfort and an emotional connection.
- Consider showing some of the information on this website to your relative. It may help them to understand some of the issues you are dealing with.
Talking openly about the illness can be difficult. Some people receiving palliative care prefer to believe that they will be cured, or their carers may wish to believe this. If this is causing you concern, talk to your healthcare professional. You may feel guilty about things that have happened in the past or you may feel under appreciated. Again, it may help to talk this over with your relative or someone else you trust, possibly outside of the family.
Sometimes, people with a life threatening illness feel unattractive and experience lowered self-esteem. It’s important to remind them that they are loved for many different reasons. If appropriate, try to maintain touch between you and your relative as touch can be a powerful way to communicate your feelings.
Try to maintain a normal relationship - If you enjoyed playing cards, listening to music or watching films together then continue to do these things. If you have an intimate or sexual relationship with your loved one, try to maintain it. A warm embrace can overcome feelings of isolation and despair and provide lasting memories.Back to top
What children will want to know and how they may react will depend on their age. Children may need honest and simple explanations of what is happening and what to expect. The child’s parent or guardian is best placed to understand their reactions and know what support they may need. It is okay to say that your relative is sick and may not get any better. Children may still visit ill relatives - gifts of cards, pictures, poems, singing a song, or just an affectionate hug can make a visit from a child very special. Some tips on talking to children can be found here.
- Talking with Children about Dying
- Dealing with children's grief: How to support bereaved children
- Talking to Children About Illness and Death
- Talking with Children and Youth about Serious Illness
Your relationship with family and friends
Due to the nature of your caring role you may find that relationships with others may change. Some people may begin to visit you more frequently while others, who used to contact you, may stop. Try not to take this personally - some people find it difficult to visit someone who is very ill or to discuss dying. Try where possible, to include people in activities that they are comfortable with, to maintain social connections. They may be willing to provide practical help like doing chores or, they may be someone you can call when you just need a chat.
Sometimes people like to give advice based on their experience. Remember, everyone’s situation is different and if the advice does not feel right you can simply say - “Thanks, I’ll think about that.” You should do what feels right for you.Back to top
Feeling overwhelmed? It’s time to relax!
People respond to caring in different ways. Some people may feel very positive and pleased that they are supporting their relative, others may feel anxious, down, angry, upset, grumpy, guilty or confused. Try to acknowledge how you are feeling - people deal with tension in different ways. Here are some suggestions other carers have used that may help.
Be aware of your emotions. Caring for a relative or friend undergoing palliative care can be stressful. Many of us have not been in this position before and are encountering these challenges for the first time. Acknowledge how you are feeling, some of you may feel happy, satisfied that you are doing all you can. Others may feel anger, depression or frustration. We all react in different ways. Here are some suggestions that other carers have used which may help.
- Plan to take a little time and do something you enjoy in the next few hours.
- Discuss your feelings with a trusted friend, a religious representative, or healthcare professional.
- Plan to reward yourself in the next few days for all the efforts you have made so far.
- Think or watch something funny.
- Listen to a relaxation exercise. These are freely available on websites such as YouTube.
Remind yourself that:
- You are doing the best you can.
- You are not alone.
- Your feelings are normal.
- There is help available – just speak to your healthcare professional.
If you feel anxious or depressed it is best to speak to a healthcare professional such as a GP or nurse. In some situations they may be able to give you additional advice to help you cope better with your situation.Back to top
Taking a break
Caring can sometimes be hard work and regular breaks are recommended. A short break can help you get on with other things and also help you to look after yourself.
If possible, ask a friend or relative to sit with your loved one. If you have a mobile phone you can be contacted if there are any problems. A regular break may be all you need to help you ‘recharge your batteries’. If you do not have people to help you, talk to your healthcare provider about services that may be available in your area or you could contact a carer’s group to see if there are support services in your area.
If you need a longer break you should talk to a healthcare professional about options that may be available. They may be able to organise carers to sit with your relative or arrange for your relative (with their consent) to be cared for in a residential or nursing home. This will give you a break and allow professionals to monitor and evaluate your relative’s symptoms.
Northern Ireland Support Services
Republic of Ireland Support ServicesBack to top