What to expect as a carer
You might not think of yourself this way. Many carers simply see themselves as a supportive partner, son, daughter or friend. However, it's worth being aware that there are support services and networks available for carers that may describe you in that way.
Each caring role is different. It can happen gradually or very suddenly. It can last for a short time or for a few years. You might care for someone two or three hours a week or they might need you all the time.
These are some of the things you might support your relative or friend with:
- food shopping
- reading letters
- helping with phone calls, for example to their doctor
- helping them to relax and do the things they enjoy
- keeping a note of their appointments and other arrangements
- making, heating or giving them their meals and drinks
- reminding them or helping them to take their medication
- helping them to stand, walk or get out of the house
- washing, dressing, shaving, brushing their hair, managing their toilet needs
- getting them in or out of bed and making them comfortable
Watch our film guides on some of these topics to learn more.
The idea of helping your relative or friend with toilet needs can cause concern for potential carers. If you don’t feel comfortable with certain aspects of physical and personal care you should discuss this at the beginning.
Your friend or relative may feel embarrassed too, but this is an important conversation to have. Neither of you should feel guilty, and other people can help with any caring tasks you’re uncomfortable with.
Carrying out practical tasks often feels like the most important thing you can do for a relative or friend. But often what’s most helpful is to find time to listen to them and keep them company. Don’t worry if you can’t think of anything to say.
Your relative or friend might want to talk about the past, going over good memories, and possibly some regrets too. Try to just listen and not pass judgements of your own.
They’ll probably want to do things by themselves if they’re well enough. They’re also likely to get tired more quickly than they used to and might need to nap during the day.
Please read How family and friends can help for more information on this topic.
Many people living with a terminal illness find it difficult to rely on others for help with their daily tasks. Your relative or friend may experience and show many emotions that neither of you are used to. They may become quiet, withdrawn, demanding, angry, frustrated or tearful.
These emotions may show only occasionally, or may overwhelm both of you. They may come and go frequently and change rapidly from one into another. Please read Coping with your feelings and dealing with other people’s feelings for more information.
Caring for someone can be rewarding, but it can also be a challenge. You may experience changing and intense emotions, including resentment, guilt, stress and depression.
Some of the help you provide will be physical. Sometimes your relative or friend might need you during the night and your sleep may be interrupted. You may be more tired, which can make you more emotional, and you might feel completely exhausted on some days. Emotions often become more intense when we’re tired and stressed.
Try to acknowledge the feelings that you have. Please read Coping with your feelings and dealing with other people’s feelings for more information on this topic.
Caring can include all kinds of challenges, from filling in forms to coping with extreme emotions. You may feel isolated, but you aren’t.
Marie Curie is running a series of free practical workshop and information sessions for carers in Wales until 2016.
We also run the Marie Curie Community where you can share your feelings and talk to other people affected by terminal illness.
Carers Trust is another good source of help and advice, and provides forums for adults and young people.
You might also find the following online support networks helpful:
- Marie Curie Community - an online forum for anyone affected by a terminal illness
- Alzheimer's Society online forum
- The Cancer Buddies Network – an online support network offering private messaging and a chat forum
- Macmillan online community for people affected by cancer
- The Multiple Sclerosis Society online forum
- OncoChat – provides an online chatroom
- Parkinson’s UK online community
Some carers will be eligible for statutory benefits. Carers UK gives details of a range of financial support you might be able to get. The law also gives you the right to ask for flexible working if you’re a carer.
Anyone who provides or intends to provide a substantial amount of care on a regular basis has a legal right to a carer’s assessment from their local social services. In Northern Ireland, contact your local health and social care trust. Read our information about carer’s assessments for details.
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