Carers: looking after yourself

2. Caring for a person with dementia

There are many positive things about caring. These include learning new skills, building on existing ones, strengthening relationships, having a sense of pride in what you are doing, and supporting someone who is important to you. And just because a person has dementia, it doesn’t mean there won’t still be good times for you to share.

However, caring can also be both physically and mentally exhausting. It affects every part of your life and can make you feel isolated, stressed and sometimes even depressed. You may also have your own physical and mental health needs, which you and others might overlook when you are caring for someone else.

Everyone will experience caring in their own way. There may be days when you feel like you can cope well, and others when you cannot. You may find that there are some aspects of caring you can manage easily, while others prove more difficult. This can change from day to day.

No matter how caring affects you, it is important that you learn to cope with some of the things you find difficult. In the following sections we look at some of the common challenges carers face and suggest ways of dealing with them.

Managing different priorities

You may often be faced with many different things you need to do at once. This can be difficult to manage and can leave you feeling exhausted – both physically and mentally.

Many carers feel torn between different responsibilities. You may be trying to care for children, look after someone who is unwell, or go to work, as well as caring for the person with dementia. As much as you may want to be able to manage everything, it is not always possible.

It is important to remember that you are only one person and you cannot do everything. Try to focus on what it most important and don’t be too hard on yourself about the things you can’t manage.

Coping with changes

As the person’s condition progresses, their needs and abilities will change. You’ll need to learn to cope with this and adapt to these changes. It can often feel like you’re having to start all over again.

It can be very difficult to see the person you care for struggling with things they used to be able to do. It is important to focus on what the person can still do, and support them to do these things. Try not to focus on what they can’t do.

Some of the changes you need to cope with will be small, but in time you may have to make bigger and more difficult decisions. This will include choices you have to make about where the person lives. For more information see ‘Caring in the later stages’ at the end of this page.

Dealing with difficult emotions

One of the most difficult things about caring for a person with dementia is the range of emotions you experience. You may feel frustrated or burnt out. You may be angry and wonder ‘Why me?’ You may feel isolated and cut off from the world. Or you may feel guilty for thinking about yourself instead of the person you care for. There may be times when you feel that you no longer love, or even like, the person you are caring for. Maybe you worry that you are only caring for the person out of a sense of duty.

These are all very common reactions to caring for a person with dementia. Many other carers will be feeling the same as you do, and you shouldn’t be ashamed about how you feel. But if you don’t learn to deal with them, these feelings can have a negative impact on many parts of your life. They can affect your wellbeing and the wellbeing of the person you’re caring for, so it is important to address them. See ‘Getting help and support’ below for more information.

Feeling guilty

Some of the emotions that you may experience, such as frustration, are normal responses to the situation. Other emotions can be more difficult to deal with, and can leave people feeling powerless or ‘stuck’.

One emotion that can be particularly hard to deal with is guilt. You might feel guilty for a number of reasons, such as:

  • feeling that you are not living up to your own or other people’s expectations
  • feeling guilty about how you feel at times – eg angry or frustrated with the person you care for
  • feeling that you’re not coping as well as others, or that you should be ‘doing better’
  • feeling that you’ve had enough of your role as carer
  • feeling resentful about the impact caring has on your life and that you never ‘chose to do it’
  • not having been more patient with the person when their symptoms were developing
  • taking time for your own needs or being on your own
  • having to make difficult decisions, such as moving the person with dementia into a care home.

You might feel guilty for one or many of these reasons. You can’t help feeling this way, but you can help how you respond to these feelings. You should try to remember that you are managing a difficult situation and supporting someone who needs you. Nobody is perfect and everyone gets frustrated with people sometimes or makes mistakes. Try to remember that you are helping the person enormously by just being there and caring for them.

If it seems as though these feelings are reaching crisis point, it is important for you to seek support. See the ‘Tips’ section below for the kind of help and support that might be useful, as well as the ‘Getting help and support’ section later in this page.

Tips: Caring for a person with dementia

  • Know your limits – It is important to remember that you are only one person and there is only so much that you can do. Try to focus on what you can do and accept the things that you can’t.
  • Prioritise – When you have a lot of different things to do, it may help to prioritise. Work out which things you really need to do and which things are less important, and do the most important things first.
  • Don’t compare yourself – Try not to compare yourself or your situation to other carers. You may feel like they are coping much better than you, but everyone’s situation will be different, and everyone has their own challenges to face. You may struggle with things that they find easy, but they may struggle with things that you cope with well.
  • Confront your feeling – It is important to try to understand why you feel the way you do, and accept any negative feelings that you have. You are not alone in feeling this way – it is a normal reaction. Having negative feelings does not mean you are a bad person, and being aware of your feelings may make it easier to deal with them and move on.

If you are feeling frustrated, try to work out why. Are you trying to do too much? Are you not getting the help you need? Once you have understood why you feel the way you do, you will be able to make clearer decisions about what is right for you and for the person you are caring for.

  • Talk about things – Talking is often the first step to dealing with your emotions. It may seem like a small thing, but it can make you feel less isolated and stressed, and it can help to put things in perspective. Bottling up your feelings, or not taking the time to address them, is likely to make things worse. This is bad for you as well as the person you care for.

You might want to talk to an understanding professional – such as the GP, social worker or counsellor – or a good friend or family member. You can also speak anonymously to someone on a helpline or discussion forum such as Alzheimer’s Society’s Talking Point (alzheimers.org.uk/talkingpoint). If you feel that you’re really struggling, speak to someone as soon as possible.

  • Talk to other carers – Talking about your experiences with other carers can also be hugely beneficial. You may be able to share advice and discuss your experiences. It may also be easier to talk about your feelings with other carers because they understand what you are going through. Carers’ support groups or discussion forums such as Talking Point are ideal. See ‘Other useful organisations’ for details.
  • Involve family and friends – You may find involving family and friends helps to give you a break and reduce some of your stress. For some people they can provide a good range of support. Even if they can’t offer day-to-day care, they may be able to look after the person while you have a break, or they might be able to assist in other ways, such as helping with finances.

It may help to talk about dementia to the people you know. Tell them what life is like for you, and for the person you care for. This may help them understand how much you do and what help and support you need. It may also help to suggest ways that people can help – sometimes they may not offer because they don’t know what they can do. And if you say you can manage without help, people may not think to ask again. Remember to always let people know how valuable their support is.

  • Ask for help – Don’t be afraid to ask for help and support if you need it. If you don’t have any friends or family who can help, or need types of support they can’t provide, a voluntary organisation or your local authority might be able to help. Find out whether there are any services available for you or the person with dementia in your local area. Alzheimer’s Society’s National Dementia Helpline can help with this. Also see ‘Getting help and support’ later in this section.
  • Think positively – Pick out and focus on some of the positive aspects of caring and supporting someone, such as your commitment to the person you care for, and your fondness for them. Think about your relationship with them and the fact you are there for them and are helping them enormously.
  • Focus on the good things – Sometimes it can be hard to see the positive things that you are achieving in your caring role. Writing things down – even small things, such as a shared joke – might be useful. When you are having a difficult day, these things can remind you of the good you are doing and that there will be better times.
  • Take a break – You will be able to cope better if you take breaks away from the person you care for and find time for yourself. Try to find time to reflect and relax, enjoy personal interests and hobbies, and socialise with friends and family. For more see ‘Taking a break’, below.