When Caring Ends

Looking after someone may be a large part of your life, but it is inevitable that your caring role will change over time.

This may be because the person you cared for has recovered and no longer needs care, or because they choose another living situation, or because they can no longer be cared for at home, or because they have died.

Whatever your situation, it is important to realise that you are not alone. It will be difficult, but you can find help and support.

This section is for carers who are experiencing significant change in their lives. It suggests steps you can take to help you through each situation.

Residential or nursing care

If the person you care for is no longer able to look after themselves and you are unable to provide the support they need, for whatever reason, residential or nursing care is a sensible and realistic option.

This may be a difficult option to consider. It may feel like you are letting the person you look after down, or that you are rejecting them, but it is important to remember that you can only do so much as a carer.

Caring can be both physically and mentally exhausting and there are often limits to the level of care that can be provided in the home. It is better to arrange the best care possible than struggle on until you reach crisis point.

This article includes advice and suggestions that will help you think about how to approach decisions about formal care, and outlines the benefits and employment rights that carers may be entitled to while caring for someone in a residential home.

Making the decision

If you are thinking about residential or supported community living for the person you support, discuss the options with them and with other friends or family members.

Allow time to find out about all the options if possible.

Talk to your GP or social worker to arrange an assessment (or reassessment) of current support needs.

There may be more help you can get at home, for example increased support from social services, equipment in the home, adaptations to the house, or more frequent short term stays in respite or residential care for the person you support.

You also need to talk with the person you care for about what is best for both of you. You may find that they accept the situation more readily than you expect. There may be ways you can reassure them – and yourself – about the move. For example, is the home or facility nearby, do you know anyone who already lives there, can the person you support stay there on a trial basis first?

If the person you support is unwilling to discuss the situation, or you are finding it hard to handle the move, it may help to talk it over with a friend, family member, another carer, your GP or social worker.

Bereavement

The following information explores some of the feelings and issues carers experience when the person they cared for dies.

Losing someone close to you is devastating. If you have been caring for that person, the loss can seem even greater. How you cope with the death of the person you cared for is a very personal thing. There is no right or wrong way to feel following a death.

Immediately after a death there are a lot of practical things to do, like registering the death and arranging the funeral, and family and friends tend to be around a lot more. It may be that only when all the practicalities are dealt with, and the people around you get back to their everyday lives, that you really start to grieve.

The following information may help you think about some of the practical issues to address and highlights some of the emotional impacts on carers when the person they cared for dies.

How grief might affect you

Everyone’s reaction to losing someone is different. There is no right or wrong way to deal with grief. Many people find it beneficial to listen to their own feelings; to do what’s best for you rather than what others think is best.

There are no time limits on grief, and no set pattern of emotions and behaviours that everybody follows. Grief does not always happen straight away.

As well as coping with the loss of the person you cared for, you also have to deal with the loss of your caring role. You may feel guilty about feeling relief, but you may also feel exhausted or alone.

The death of the person you cared for may mean that the relationships you built up with the professionals involved in their care come to an end.

Carers also talk about losing contact with friends and family because of the demands of their caring role. Picking up old social contacts or meeting new people may be the last thing you feel like doing when you have just lost someone.

Finding support

The best help and support often comes from the people you know best, and who know you best. You may find that some people seem awkward around you, often because they want to do and say the ‘right thing’ but are not sure what that is. If you feel able to, tell the people around you what you need from them and how they can help. Close family and friends may also be able to help you do this.

Talking about what has happened, and about the person who died, can help you to come to terms with their loss, and to cope with the feelings you have.

Friends and relatives who knew the deceased and can share memories of them with you can be a great source of support. Talking to other people who have been bereaved, and who have a better understanding of what you are going through, can also help.

Your local hospice or your GP can put you in touch with a bereavement counsellor or grief support network if you would like this assistance.

Rebuilding your life

The ending of your caring role may take time to adjust to. Having more time to yourself may give you the opportunity for a much needed rest, but it can also leave you with a lot of time to fill.

If you are used to always having things to do, it can be hard to stop and think about what you would like to do, and to be able to make choices for yourself.

Some people find that once they are no longer caring, exhaustion – both physical and emotional – catches up with them and they may feel unwell for a while.

Having spent time caring for someone else and putting their needs first, it is really important to look after yourself and let other people look after you.

When caring ends, some practical matters will have to be dealt with fairly quickly, for example, benefits and housing, but you do not need to rush into making decisions about what you do next straightaway.

The following information outlines some of the issues you may need or want to think about.

Finding new challenges

It can take time to come to terms with the loss of your caring role, but there will come a time when you are ready to think about what to do next. Keeping in touch with friends, family and your local community can be difficult when you do not have much time for yourself.

You may feel isolated after many years of caring and you may feel that this has knocked your confidence. You could start by finding out what help or services your local carers’ organisation or group offers to people whose caring role has come to an end.

Volunteering

If you have time to spare, you could consider volunteering. As well as offering much needed help to local people or organisations, volunteering can be a very social activity, and can be a good way to meet new people.

Volunteering opportunities can range from befriending older or disabled people, offering your skills (for example, administration, fundraising, legal advice etc) to a local charity, to helping out on a local conservation project.

Learn something new

You may feel that you would like to refresh skills that you have not used for a while, or learn something completely new. You might have gained new skills or interests from your caring role that you also want to pursue. Taking a course can also be a great way to meet new people.

Paid employment

If you have given up work (or not worked at all) because of your caring responsibilities, you may want to work or return to work once your caring role ends. Visit the Careers New Zealand website to explore your options.

Carers NZ has adapted this information from Carers UK’s When Caring Ends resource. Thank you Carers UK!