Caring for adults with M.E.

A A A Text size

Becoming a carer

Husbands, wives and partners often find themselves in the role of primary carer when their ‘other half' becomes ill. You may also find yourself in a caring role for your sibling, parent or child with M.E., whether they over or under 18 years old.

It can take time for you to adjust to the changes in your relationship and to understand and accept the limitations and fluctuations in the health of the person you're caring for.

Work might be affected and if so, your financial situation may also change.

Please don't doubt yourself or the person you care for just because other people may be ill-informed about the condition. The better your own understanding of M.E., the more you will be able to dispel the misconceptions you may find in other people.

Looking after yourself

Coping with someone becoming dependent on you is a huge responsibility and it can be difficult to overcome feelings of duty towards the person you care for. However, an essential part of self-care is to get support from others and this is especially important when you are living in a situation that is emotionally and physically demanding.

It’s very important that you let your GP know you are a carer as they can often be a valuable source of information about medical and community services and support, including priority flu vaccination. If you become unwell, your GP needs to know that this could impact the person you care for.

Accept help from your friends and family when it is offered to you. If you say you are managing, they may not think to ask you again, which could result in you missing out on an invaluable source of support.

It may be worthwhile checking on the services that could provide urgent care, if you're unable to care due to illness or an accident. Carers UK has useful information on planning for emergencies, including where to find local practical support.

Your rights under the Care Act

The Care Act gives gives carers the legal right to have their caring needs assessed to look at all their needs. It might recommend things like:

  • someone to take over caring so you can take a break
  • gym membership and exercise classes to relieve stress
  • help with taxi fares if you don't drive
  • help with gardening and housework
  • training how to lift safely
  • putting you in touch with local support groups so you have people to talk to
  • advice about benefits for carers

Find out more about Carer's Assessments on the NHS website.

The person you care for may also be entitled to local council social care support.

Taking a break

It is vital to take breaks away from the person you are caring for. Having regular time to relax and to do something that is just for you is crucial in recharging your batteries and maintaining your own life outside of caring.

If you are concerned that the person you care for will feel uneasy having someone else around them, try to think of different ways that would take the pressure off you. For example, even something as straightforward as a friend preparing dinner could give you half an hour to spend on yourself.

Talking to other carers

You may find it helpful to talk anonymously with other unpaid carers, either to ask for tips on adapting to your new role or simply as a way of venting your worries and frustrations to someone else in a similar position. In these instances, a good place to start would be the Carers UK forum, a popular online message board that allows you to talk to other unpaid carers free of charge. Just sign up for a free account and you're off.