needs, as keeping healthy will
maintain your ability to continue
caring. It’s easier said than done of
course, with so many other priorities
in the day. There’s no magic wand,
but there are a number of ways you
can help to maintain your health.
Nutrition
A poor appetite can result in weight loss, a lack of energy, a reduced ability to fight infections and impaired concentration.
Too much of the wrong sorts of food can of course lead to weight gain and the development of obesity-related illnesses. It is generally considered that a healthy diet for most people should contain7:
Starchy foods such as bread, rice, pasta, breakfast cereals and potatoes. Try to use high fibre versions where possible such as wholemeal bread or pasta.
At least five portions of fruit and vegetables a day.
A moderate amount of dairy products.
Try to go for low fat versions if you can.
A moderate amount of meat, fish or other proteins such as eggs, beans, peas and lentils. Try not to eat too much red meat.
A small amount of salt. Many processed foods have high salt levels, so always read the labelling.
… and because we all need them, the occasional treat – but only in moderation.
As we all know, drinking too much alcohol can be harmful.
The Department of Health advises that men should not regularly drink more than three to four units of alcohol per day; for women, this limit is two to three units. One pint of beer is usually equal to two to three units and one small glass of wine is equal to around 1.5 units.
FURTHER READING Diet and nutrition
MS Society publications are available free of charge by post or to download (www.mssociety.org.uk/publications or call 020 8438 0799 weekdays 9am-4pm)
Looking after your back
Just over half of all carers who took part in research carried out by Carers UK reported that they had sustained a back injury as a result of their caring responsibilities.
(Ignored and Invisible, Carers UK, 2001)
The biggest risk factor for many carers is the need to help the person they care for to change position and move around the home. Earlier in this handbook we mentioned the value of ‘moving and handling’ training (see page 45).
Without the right guidance and support, it is more likely that you will experience back pain or even serious injury.
If you are experiencing back pain and it lasts for more than 48 hours, or gets progressively worse, you should consult your GP. He or she may prescribe anti-inflammatory medication to relax your muscles, or may suggest that you see a physiotherapist, osteopath or chiropractor.
The lowest region of the back (the lumbar region) is where people experience pain most often. This is because it bears the entire weight of the upper body, and is flexed, twisted and bent more than any other part of the spine.
If you need to help the person you care for move around it is important that you do what you can to strengthen your back muscles and keep fit. The charity Backcare produces a number of helpful publications, including The Carer’s Guide to Safer Moving and Handling of People.
Dealing with emotions – anger and guilt
As a carer, you’ll know that although caring can be very rewarding, it can also be hard work and very stressful.
Remember that some of the negativity you may experience from time to time is a normal response to challenging circumstances. But if negative emotions build up too much they can become destructive. There are ways to manage your emotions before they get to this stage.
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Carers quite often feel guilty about not doing enough for the person they care for, or for having negative thoughts about their situation. If you experience feelings of guilt, try to analyse why exactly this is. Are you feeling guilty because you think you should be managing better? Think about whether the goals or tasks you are setting yourself are realistic. Do you need help with your caring? Consider talking to other carers, online or at a carers group meeting. You’ll soon realise that many others feel just the same as you.
You may feel guilty about thinking horrible things about the person you care for, or treating them less well than you should. It’s not uncommon for carers, at times of stress, to have the urge to walk away from it all. It often helps to talk about your feelings with the person you care for. You may be surprised at how much they understand already. If this is too difficult, talk to other carers or telephone the MS Society Helpline. It’s important not to judge yourself. Talking through your feelings with another person is often the first step towards reducing their impact upon you.8
If you feel angry and frustrated, you might occasionally have angry outbursts against the person you are caring for. If you are regularly feeling angry and frustrated about your situation, maybe it’s time to talk to someone about getting more support. Are you having enough breaks from caring? Just a short break, relaxing or simply having
‘me time’ can be really beneficial.
Look for ways of expressing your irritation away from the person you care for. Many carers let off steam on online discussion boards. The MS Society website has a discussion forum for carers: go to www.mssociety.org.uk/forums. Carers UK and the Princess Royal Trust for Carers also have discussion forums on their websites . If there are particular situations or times of day that tend to spark your feelings of anger or frustration, think about how you can change your routine or find techniques for diffusing the tension.
You may be feeling guilty about not being able to manage without help. Many carers struggle on for years before they accept the fact that they may need help. A little help now and then will enable you to recharge your batteries and give you more energy to continue caring.
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Stress and depression
We all experience stress from time to time. It’s part of modern life. However, your caring role can bring more than your fair share, and it’s important to know how to recognise stress and how to deal with it. Some people experience physical reactions to stress, such as shaking or hyperventilating (breathing faster and deeper than usual). If you are under a great deal of stress, over a period of time you may also experience:
irritability or anger
apathy, depression or anxiety lack of concentration
loss of appetite or comfort eating loss of sex-drive
excessive tiredness skin problems
tense muscles and tension headaches heart palpitations
You should consider seeing your GP if stress is causing you any of these or other physical or emotional symptoms.
In the longer term, if you do not deal with your stress it could lead to more serious conditions such as high blood pressure and heart disease.
Your GP will be able to identify how your stress is affecting you, and will be in a position to offer you a range of options to help deal with it. In exceptional circumstances your doctor may prescribe medication, although it is usually better to explore how you can deal with the things that are causing you stress in the first place. Some practical things you might try include:
taking regular exercise
eating a healthy, balanced diet, rich in fruit and vegetables
talking to friends, family, or other carers listening to music or relaxation CDs
Other stress management techniques include counselling, psychotherapy and hypnotherapy. Complementary approaches include aromatherapy and reflexology and these may, if nothing else, provide a quiet, relaxed environment in which to wind down.
Recognising depression and how to deal with it For some people, continued stress and negative emotions can develop into full-blown depression. Many people feel scared and embarrassed when they first experience depression but remember – about one in five women and one in ten men get depression serious enough to need treatment at some point in their lives.8
If you are worried that you might have depression, ask yourself whether the negative feelings you are experiencing are interfering with your day-to-day life, and whether they are with you for long periods of time. If the answer to either of these questions is ‘yes’ it’s worth talking to your GP.
Some of the symptoms of depression listed below are similar to those for general stress. Your GP or suitably qualified specialist will be able to make a definite diagnosis.
low mood – often in the morning or last thing at night
irritability, quick temper loss
a loss of interest in activities that you might normally enjoy
loss of self-confidence and ability to socialise with others
lack of energy, tiredness and poor concentration
difficulty in making decisions trouble sleeping
loss of sex drive
disturbed eating patterns – either loss of appetite or eating too much
a restless or agitated feeling a feeling of worthlessness or guilt thoughts about suicide
The two main approaches to treating depression are medication such as antidepressants and counselling.
Cognitive behavioural therapy can also help with managing depression. A person’s treatment will depend on the severity of their symptoms. If you feel you would benefit from talking to someone about your feelings, but don’t feel able to talk to those close to you, it may be helpful for you to talk to a counsellor, psychologist or psychotherapist. Your GP may be able to arrange this for you, particularly if you are experiencing depression.
Some counsellors are based in GP surgeries, others will be independent. You can also find details of counsellors in your area through the British Association for Counselling and Psychotherapy . The Samaritans offer a 24 hour telephone helpline for anyone experiencing feelings of depression or despair.
Coping with loneliness and isolation
Caring can be particularly isolating. As the condition of the person you care for develops and your caring responsibilities increase, other friends and family may find it difficult to cope themselves. They may withdraw, assuming that you will contact them if you need help. We all know how difficult it can be to contact someone we haven’t heard from for a while, so in many cases, contact can be lost altogether.
If the person you are caring for has high care needs, it may be difficult for you to leave the home and to socialise as you did in the past. Giving up work can mean that you lose your work-based friendships, or have less in common with ex-colleagues when you do manage to meet.
It can feel strange at first, but attending a support group (such as an MS Society branch or a carers group) can be a great help. It’s often difficult to talk about your life to people who are unconnected to the world of MS or caring. By joining a support group you may find that you can express your feelings
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and that you will be understood by others in similar circumstances.
If you find it difficult to leave the house, consider one of the many online options for keeping in contact with others. The MS Society’s online discussion boards allow people with MS and carers to share experiences and feelings. There are many other examples of such forums, both within the UK and internationally. You may find you develop a network of friends from around the globe!
FURTHER READING Living with the effects of MS
MS Society publications are available free of charge by post or to download (www.mssociety.org.uk/publications or call 020 8438 0799 weekdays 9am-4pm)
Training for carers
Some carers find it helpful to undertake some general training around being a carer. The ‘Caring with Confidence’ learning programme aims to give carers a better understanding of the issues they face and helps them to find new ways to tackle them.
Free interactive online learning and self-study workbooks are available at www.caringwithconfidenceonline.co.uk. Group study sessions are also available in some areas – check with your local carers’ centre for more information.
In England, the Expert Patients Programme also runs
‘Looking after ME!’ self-management courses for carers.
To find out more, visit www.expertpatients.co.uk or call them on 020 7922 7860.
The Expert Patients Programme also runs carers’ courses in Wales. For details, visit www.eppwales.org
In Scotland the MS Society runs self-management courses for people with long-term conditions. Call 0131 335 4050 or visit www.mssocietyscotland.org.uk for details.
We are not aware of any such courses at present in Northern Ireland, but Carers NI (part of Carers UK) are well placed to know about developments in this area. i
SECTION 6