Looking After You

Caring for someone who is physically deteriorating can be enormously frustrating. Whatever you do, nothing will ever be the same again. You may feel your efforts are not enough; that your life has changed forever, that you have no time to yourself and, sometimes, that nothing you do is actually appreciated.

It is vital that you remember that you are not, and are not expected to be, super-human. You are a person who is doing your best in circumstances that neither you nor the person you are caring for could have anticipated. Your life has changed and it is perfectly normal to feel frustrated or resentful from time to time. What’s important is that you and the person you are caring for take the time to talk to each other and, if necessary, to others about your feelings.

Carers have a legal right to an assessment of their own needs. You have a right to an assessment if you are looking after a friend or relative who cannot manage without your help. You also have a right to an assessment if you intend to look after someone. The waiting time for an assessment varies from area to area.

Your Carers' Assessment is your opportunity to tell social services about the things that could make caring easier for you. You may want to think about: 

• Do you get enough sleep? Is your health affected in other ways?
• Are you able to get out and about?
• Do you get any time for yourself?
• Are your other relationships affected?
• Do you want information about benefits?
• Do you need information about the Work & Families Act 2006?
• Is the person you care for getting enough help?

Do also give thought to the sort of services which might help you:

• Services that give you a break
• Emotional support from other carers or people who understand
• Help with household tasks
• Help with caring tasks during the day/night
• Activities for the person you care for

You may have some ideas of your own about services that would help you that you want to talk through with social services. Other services that you might want to discuss with them are those that may help the person you look after.

Make sure that your Carers' Assessment isn’t carried out in the presence of the person you are caring for. This will enable you to talk more openly about how caring is affecting you, without you having any feelings of guilt.

The telephone number of your local council social services department can be found in your local telephone directory under local authority.

When someone you love has MND, the chances are that you will experience a whole range of emotions at different times. All are perfectly normal so don’t suppress them or let them overwhelm you.

You may feel ‘bad’ or ‘selfish’ about some of the feelings you are experiencing, but if you talk to anyone else caring for someone, you will find out very quickly that you aren’t alone.

Most of us expect to live a long, healthy and fulfilled life, often with a long term partner with us through to old age. When someone you love is diagnosed with MND that vision changes dramatically. Many people will experience real grief at its passing. Grief brings about a whole range of reactions from shock, denial and anger through to bargaining eventually, gradual acceptance.

Acceptance doesn’t mean giving up or giving in. It means learning to let go of what can’t be changed and living and making the most of one day at a time.

If feelings of frustration and resentment are not dealt with, it is quite possible that they will bubble up into anger. There may also be times when you simply have a ‘bad day’ – we all have them and we all get angry when we do.

The important thing is to recognise anger and find ways both of dealing with it and avoiding similar situations in future. You may feel angry with yourself or, equally possible, at the person you are caring for. If you are tired, anger has more chance to take control, so try to ensure that you get enough rest and sleep.

In many cases, fear stems from feeling you have lost control. With an illness like MND, it is very easy to feel that any control you once had has gone. You may also fear the future or your ability to cope. Again these are natural reactions and talking about your fears will help.

It is quite common to feel guilty, either because it is your loved one who is sick while you are healthy or because of some of the more negative emotions you may be feeling. Learning to accept your situation and that there is nothing you could have done about it will help, as will talking about and sharing your feelings – positive and negative – with others.

No one is super-human, no matter how hard they try. People in all walks of life feel stress at some time or another. For people who suddenly find themselves re-evaluating their lives, their roles and their futures by caring for someone diagnosed with MND, the reality of coping with stress will become a priority – because it is only by learning to manage stress that you will begin to be able to take back control of your life.

Anyone who is tired finds it far more difficult to cope and carers in particular need to ensure that they have as much energy as possible. It’s all part of taking care of yourself so that, in turn, you can effectively care for someone else. Here are a few suggestions of how you can avoid getting too tired to cope: -

• Prioritise - Make a list of the tasks you usually do... then divide these into the most important, those that need doing but not immediately and, most importantly, those that don’t really need to be done at all. Be honest with yourself, there will almost certainly be jobs that aren’t vital!
  
• Delegate - Have a close look at your list – what could easily be done by someone else? Jobs like the ironing, hoovering or shopping are ideal to delegate to family or friends. Some people will have offered to help; others will want to do something but don’t know what would be useful. Now is your chance to tell them!
  
• Rest - No one can be on the go 24 hours a day, seven days a week. Make time for a break so you can have a rest.

‘The Selfish Pig’s Guide to Caring’, written by Hugh Marriott is a wonderful touching yet witty personal account of life as a Carer. Available from all good bookshops.

We already know that carers experience poor mental and physical ill health as a direct result of the stress and physical demands of caring. We really can’t emphasise enough, just how very important it is that as a carer you take care of your own needs as well as the person you care for.

You may find it so overwhelming looking after your loved one’s needs that you don’t feel you have the time energy or inclination to look at your own. But in order for you to maintain your emotional and physical strength to cope and carry on, we hope you take on board the suggestions we provide below to help you keep well.

Eat a healthy well balanced diet; it will help keep your energy levels up.

Try and get a little fresh air and exercise every day, just don’t overdo it.

You deserve a little ‘you’ time, so have a read, ring a friend for a chat, listen to some music, have an early night or treat yourself to some complementary therapies.

Contact your local Carers Centre to find out about the practical carers courses they run. Looking after your back is essential so a safe lifting and handling techniques course might prove really beneficial.

Give yourself a short break away from caring. The benefits will outweigh the negatives. They are also an opportunity to have different experiences that you can share, as you would in ‘normal’ life.

Even though you may think a holiday is out of the question or even selfish on your part, it can make a real difference to your ability to cope, whether it is with or without the person you are caring for.

RADAR produce a book ‘Holidays in Britain & Ireland’ which includes hotels, guest houses, self-catering cottages and flats, holiday parks, activity centres, campsites and centres where specialist service and care are provided.

Visit:www.radar.org.uk

RADAR, 12 City Forum, 250 City Road, London, EC1V 8AF. Telephone: 020 7250 3222.  Email:radar@radar.org.uk