Look after your own health
If one of your relatives is seriously or chronically ill, the help they receive is crucial. But it is also important that you look after yourself and your own health.
Common health challenges for carers may include:
- sleeping difficulties, concentration difficulties, decreased energy levels
- worry, stress, anxiety, depression
- various pain conditions, impaired immune system, diet-related issues
What helps will vary from person to person, but you can
- attend courses that can help you manage stress
- involve your network
- undertake regular physical activity
- eat healthily and regularly
- try to get enough sleep
If you need help to make lifestyle changes or to manage health challenges, you can also contact the health centre in your municipality.
In some cases, as a carer, you may find yourself in a situation in which you have neither the opportunity, desire or capacity to get involved with the person who is sick. Some carers need to be able to say: “I don’t want to be involved right now”.
Contact your GP for help
The GP can be a good place to start if you need help because your health challenges are becoming too great. Take a preventive approach. The GP has a duty of confidentiality and can act as a conversational partner. Your GP will assess whether you need a medical certificate and can also refer you for further treatment. Carers who experience mental or physical health issues can also be entitled to services from the health and social care services. Together, you and the GP will determine where you can get the best help.
Awareness of the user’s illness can increase perception of coping and control
It is easy to feel at a loss when confronted with illness.
More knowledge can help you:
- get an overview of the treatment that is offered
- understand how the health and social care services can help
- understand how to best support the person who is unwell
- know when to ask for help
- gain a common understanding of the situation, both with the person who is unwell and others who are close to them
- understand how to involve any affected children
- get an overview of your rights
Maintaining dialogue with the health and social care services
Positive dialogue between you, as a carer, and those who provide health and social care services to the person who is unwell is an advantage for all. You can contact the health and social care services to find out what their procedures are for involvement with and support for carers. You can also do this together with the person who is unwell.
Consider what questions you might want answers to:
- Who is responsible for treatment/follow-up and who is the contact person?
- What is important to you?
- What can you learn about the disease and the treatment?
- What can you do if the disease gets worse?
- What rights do you have?
- Where can you find more information?
- When can you meet again?
Remember that, as a carer, you may also possess information that it would be useful for the health and social care services to know. This could include
- the care you provide to the person who is unwell
- how the family as a whole is affected by the situation
- previous experiences from various treatment initiatives
Is there any respite?
Carers and others who provide high levels of care may be entitled to supportive arrangements in order to ease the care burden. This applies to both voluntary carers and parents with parental responsibility for children under the age of 18.
Respite initiatives may provide the opportunity for you to remain in work, enjoy family life, go on holiday and more. Contact your municipality to find out about the services available to you.
You can also read more about municipal services and supportive arrangements for carers here.
Try to avoid becoming isolated
A demanding, long-term carer role can lead to a loss of social network beyond the immediate family. If you remain aware of how to involve your network, whether it is big or small, it can help prevent the loss of friendships and support.
To the extent possible, you should set aside time for your own activities and positive experiences, despite having to deal with illness. Think about who you would like to have more contact with, what gives you extra energy for everyday life and whether there is anyone who can provide support.
Meet others in the same situation
Many carers find that they are able to process their thoughts and problems and find solutions when they share their experiences with others who are in a similar situation. This contributes to a positive community and increased awareness.
There are a number of places you can contact for support:
- User and carer organisations
- Voluntary organisations
- Carers’ centres, discussion groups, etc.
- Relevant websites with online chat
- Learning and coping services offered by hospital trusts or municipalities
You can also ask the health and social care service of the person you care for.
Talk to your employer
Caring responsibilities and family illness can affect your working life. It can be challenging to combine caring responsibilities with work or education. But work can also provide some relief.
Many people would benefit from informing their employer or immediate manager about the situation. Adaptations may include:
- flexible working hours
- the option to arrive a little later if needed
- being able to take time off at short notice
- taking time off in lieu
- answering personal phone calls
- working remotely from home
- paid or unpaid compassionate leave/absence in special situations
Seek financial advice
Family members and other carers who are affected by long-term illness and who have extensive caring responsibilities may experience a difficult financial situation. Children and young people’s ability to participate in leisure activities, for example, may be impaired by changes to the family’s finances.
If your financial situation has changed as a result of illness, treatment and caring responsibilities, it can be a good idea to seek financial advice. There are support schemes available and it is important to seek help early (including carer’s allowance, care benefits and basic and supplementary benefits).
Seek help if you are subject to harassment, violence or abuse
Some carers experience harassment,violence and abusefrom the person theycare for. Common reactions to being exposed to violence from people close to you include anxiety, shame and changed self-perception, as well as concentration and memory problems.
It is important to involve those close to you and be open about what is going on. Experience shows that if violence and harassment persist over time, tolerance limits may change. You need to speak to someone and not deal with it on your own. You should report it to the police and, if necessary, get help to prevent further episodes of violence.
Health and Social Services Ombudsman
If you are not satisfied with the healthcare or social services you have received, or you have questions concerning your rights as a patient, you can contact the Health and Social Services Ombudsman for advice and guidance, which is available to everyone.