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EPDA - European Parkinsons Disease Association EPDA - European Parkinsons Disease Association EPDA - European Parkinsons Disease Association EPDA - European Parkinsons Disease Association EPDA - European Parkinsons Disease Association EPDA - European Parkinsons Disease Association EPDA - European Parkinsons Disease Association
EPDA - European Parkinsons Disease Association
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How can I help myself?

As a carer you are often so focused on your responsibilities that you forget to assess your own life and look after yourself properly.  Your personal needs may sit firmly at the bottom of a list of priorities, but as a carer it is very important that you look after your own health and wellbeing too. Otherwise, you may not be in a fit state to take care of anyone else. Hopefully the information in this section will help you cope with the demands of caring and enable you to arrange your life in a way that compliments your changing responsibilities.

Health and fitness

Keeping healthy is frequently thought of as being free of any illness or disease, but in fact it is much more than that.  Good health involves:

  • physical health - a healthy body
  • mental health - being alert and able to think clearly and make sound judgements
  • emotional health - recognising how you feel and dealing with your state of mind as appropriate
  • social health - engaging in social activities and interacting with others
  • spiritual health - recognising deep feelings and beliefs, both religious and non-religious, and being in harmony with the world around you.

Be as healthy and on top of your caring role as you can by following these tips:


General health

Make sure you consult your doctor about any health problems you have to ensure anything serious is identified at an early stage. Minor ailments should be treated promptly so that they don’t develop into something more complicated. Discuss your caring role with the doctor – some surgeries keep a register of carers that can be helpful if you encounter problems and need further support.

Be honest when you talk to your doctor if you are finding it hard to cope and need help.  Keeping a diary of how you and the person you care for have been managing can help you pinpoint areas of difficulty and find solutions to any issues that have arisen.  You may find it helpful to take a friend or family member with you if you need moral support.

Remember to get regular health checks such as:

  • eye tests – see How might Parkinson’s affect the eyes?
  • hearing tests
  • dental check ups – see Teeth & Oral Health
  • screening tests (sometimes only from a certain age) -  e.g. breast and cervical screening
  • blood pressure - as this may sometimes be considerably raised due to the demands of caring.

Diet

A balanced diet is essential to keep you healthy and fit for your daily challenges. It will help you maintain a healthy weight and can play a role in preventing many conditions such as heart disease, cancer, stroke and tooth decay. A common complaint amongst carers is that they find it hard to know what to cook, often because they have limited time. But help is available: healthcare professionals, such as dieticians, will be able to advise further and there are several websites that offer guidance and suggestions, such as www.eatwell.gov.uk. Some carers find it helps to plan food ahead. Prepare meals in advance by making extra portions and keeping them in the freezer, and always stock up on basic ‘store cupboard’ ingredients so that you have simple meals in reserve.

Drinking alcohol is fine in moderation, but don’t turn to this as an escape for difficulties you face.  If you think you are becoming dependent on alcohol, seek help promptly from your doctor.

For more information see Diet & nutrition.


Exercise

Try to develop a regular exercise routine. Not only will this help your fitness levels, it will also encourage the release of endorphins to help reduce stress and prevent many conditions including heart disease, high blood pressure, arthritis, osteoporosis and stroke.  High blood pressure was reported by 32% of carers in a survey carried out by the Parkinson’s Disease Society (UK) in 20071, and exercise is an effective way of looking after your heart and encouraging a healthy blood pressure.  Join an exercise group, or simply include walks or other exercises into your daily routine. Some techniques, such as pilates, yoga and Tai Chi, have additional benefits, but any exercise, however mild, will be valuable. If the person you care for can exercise with you, this can be good for their health and provide you with an activity to enjoy together. If not, then treat this as an opportunity to enjoy some much deserved time for yourself.

Top tips for effective, sustainable exercise!

As healthy a lifestyle as possible, to suit each individual’s circumstances, is key to taking care of the carer.  Exercise plays an important part in this and the tips below should help you to keep healthy.

  • It is recommended that we exercise for 30 minutes a day, five days a week, briskly enough to increase heart and breathing rates.
  • If you find this hard try breaking sessions into bursts of 10 minutes, three to four times a day.
  • Gradually build up the duration of any exercise session – don’t try to do too much too fast if you are not used to exercising.
  • Don’t forget to warm up first.
  • Plan your exercise programme, giving yourself some realistic goals, and start gently.  Make sure your exercise programme suits your daily routine.
  • Keep a positive attitude as you are much more likely to reach your goals then!
  • Always stop if anything hurts or you experience discomfort.
  • Listen to your body and learn to recognise when you should stop.
  • Group exercising can add a welcome social dimension to keeping fit, so look at organised or group classes at your local gym or other public venues.
  • An exercise ‘buddy’ can provide company and motivation.
  • Make every day activities such as housework more energetic.  Try doing the chores faster, vacuuming using the whole body instead of just an arm, or timing yourself for example.  Even gardening or walking can increase your heart rate and breathing and can therefore help!
  • Use stairs instead of lifts if you can, or get off the bus one stop early – you can even do leg exercises watching television!
  • If you have to spend a lot of time in one position, perhaps at work, stretching helps to lengthen a muscle and keep it supple.  Try to hold the stretch – perhaps pulling your toes up or grasping your hands behind your neck and holding your elbows back – so that you feel a gentle pull on the muscle as it lengthens.
  • Posture is important to try to stand tall or sit up straight, using your core muscles and pulling in your tummy and pelvic floor muscles.
  • Consider having an exercise machine at home if you have space – but make sure it is effective and suits your needs.  It is best to consult a physiotherapist before investing your money.
  • Try exercise that lets your mind wander, such swimming, walking and gardening.
  • Allow time for your mind and body to relax after exercise.
  • Don’t give up easily – as with all things practice is the key to success.
  • The benefits may take time to be felt, so be patient.
  • Make exercise a habit.  It is better to exercise two or three times a week for shorter periods than just a long session at weekends.

Caution! 

Here are some additional suggestions if you have any of the conditions mentioned below:
  • Back pain – try to avoid sitting or standing for any length of time
  • An injury – low impact exercise is safer so try swimming, walking or cycling
  • Bad knees – avoid walking up or down hills as they place more strain on the knees.

For further information on how to build exercise into your daily routine, and some easy to follow suggestions for simple exercises, see ‘Easy Exercise Guide – A Little a Day, the Easy Way’ www.csp.org.uk/uploads/documents/csp_easyexercise2009_booklet1.pdf


Back

Caring for a person with Parkinson’s may involve a significant amount of lifting and turning, putting extra strain on your back, neck and shoulders. Back pain can be the result of a sudden movement, or strain due to incorrect posture when carrying out a movement.  Pain relieving tablets may usually be taken unless you have been advised otherwise, but if the pain does not ease within a few days then you should consult with your doctor to ensure that no serious damage has been done. 

It is important to use safe techniques for lifting and handling to ensure minimal strain and to prevent injury to your own body – the following advice may be helpful:

  • avoid activities that will cause damage or make existing back pain worse, such as heavy digging, lifting objects from high shelves and carrying awkward sized objects.
  • think before lifting – make sure you are capable of lifting something safely as many back injuries result from improper lifting.  Strain occurs when lifting with the spine twisted, or if jerking or twisting while lifting
  • regular exercise can help to keep you mobile and build up the core muscles which support the back.  Inactivity may increase stiffness and pain.  It is widely believed that even people with arthritis can exercise without harming their joints provided they start off gently to assess what they can do without worsening any pain
  • encourage the person you care for to be as mobile as possible to minimise any avoidable weight bearing or stress on your part. A physiotherapist and occupational therapist can advise further.
  • watch your weight – being overweight tends to increase the chance of getting low back pain
  • ensure correct sleeping posture – a firm but not hard mattress offers your back the best support.  If the bed sags when you lie on it then think about getting a new mattress, or alternatively some people find placing a firm pillow under the mattress where it sags can help.

Standing

Protecting your back - standing

Ensure good posture at all times, with your head up and shoulders straight – avoid slouching.

Lifting

Protecting your back - lifting

Keep object close to the body and avoid twisting

Sitting

Protecting your back - sitting

Ensure your back is supported at all times, with a well supported chair or cushion in the arch of the back

Bending

Avoid bending wherever possible. Raise work surfaces so you don’t have to bend.

Protecting your back - sit rather than bend

Sit rather than bend over

Protecting your back - kneel if working near to the ground

Kneel if working near to the ground.

If you are finding it difficult to cope with lifting and moving the person you care for ask your doctor if he can refer you to an appropriate professional for assessment and guidance – depending on the country in which you live this may be a physiotherapist, occupational therapist, community nurse or social worker.  They will be able to advise on specialist equipment to help with lifting and also local courses you can attend on lifting and handling.


Did you know?

Arching the back before coughing or sneezing may help prevent back problems.


Feet

Carers often find they spend a large proportion of their time on their feet, so foot care is essential. If you experience any problems, consult your doctor, who may refer you to a podiatrist for treatment.

Basic foot care can easily be done at home: wash your feet daily in warm, soapy water, and dry carefully between the toes. Trim nails regularly, cutting straight across without making nails too short or cutting down at the corners as this may lead to in-growing toe nails. Always wear comfortable shoes to prevent long term damage to your feet.

For more information see Podiatry (foot care).

 

References


  1. The Complete Carer's Guide
    , Bridget McCall, Sheldon Press (1 Aug 2007)

Emotional health, tiredness, stress and depression

Being a carer tends to impact on emotional health and feelings of frustration, loneliness or sadness are not uncommon. 

Tiredness and stress are very common problems for carers. They can be caused by a number of factors such as:

  • reluctance to give up work and become a carer
  • lower income and financial worry
  • reduced social activity and/or social isolation
  • changes to relationships with others
  • lack of ‘me time’ due to increasing responsibilities
  • inexperience and lack of knowledge of the role of carer
  • fatigue and deterioration in carers’ health
  • deterioration in health and spirit of the person cared for.

Many feel their role leaves them physically, mentally and emotionally drained, and at risk of being too exhausted to be an effective carer.  Prolonged stress and tiredness can cause health problems that can affect your ability to be a carer. Moreover, other health problems may, in fact, be stress-related, even though they don’t appear to be, so it is vital that you are proactive in managing your stress levels.

It is not unnatural to feel stressed and down from time to time, but if feelings of sadness or lack of interest in life become more prolonged, depression may result.  This can be caused by stress overload or by a feeling of isolation and a sense of powerlessness over your situation.  Many of the symptoms are similar to those of stress and, like stress, it is important to talk to your doctor to find ways of overcoming the causes and finding ways to cope and avoid depression.

Warning signs that you may be suffering from stress and/or depression include:

  • chronic tiredness and a feeling of being run down
  • negativity and irritability, often at the simplest things that would not usually make you react in such a way
  • frequent headaches or stomach trouble
  • loss of appetite or serious fluctuations in weight, up or down
  • difficulty sleeping or concentrating
  • signs of depression, such as apathy, sadness, lethargy, being on edge, feelings of worthlessness or hopelessness
  • a sense of being overwhelmed or helpless, often leading to tearfulness
  • anger directed at those making demands on you when you would normally remain calm or in control
  • lack of energy and/or shortness of breath
  • consuming more alcohol than usual to help you relax.

It is important to find ways to manage constant tiredness, stress and depression, so if you recognise any of these symptoms in yourself seek advice from your doctor. Try to work out the causes and identify if there are any specific factors that you can adjust or eliminate. For example, some carers have found allowing a short rest after lunch helpful, or taking up offers of help from friends, or using separate beds if your sleep is disrupted.  Taking time out to prioritise daily tasks often puts things into perspective too. 

Discussing worries and pressures with family and friends and/or appropriate healthcare professionals can also help. Other carers and support groups may be able to offer useful tips. Seeking help is not a sign of failure: it is a positive step in helping you cope and maintain emotional wellbeing so that you can do the best for the person you care for.

For more information see:

Respite care

One of the most valuable strategies for coping with caring is to have a regular break, often known as ‘respite care’, and to make time for yourself away from your routine and from Parkinson’s.  Even brief breaks are important as they provide an opportunity to recharge your batteries, clear your mind, pursue your own interests and return to your role refreshed and revitalised.   It is of course important though that this time is spent relaxing or doing things you enjoy and not just catching up on jobs!

Respite can also benefit the person you care for as they will have someone different to interact with or perhaps different surroundings to explore if they go out of the home. They may also be relieved that you are having a break and they should benefit from a more relaxed you on your return.

Respite can take many forms:

  • someone, such as a friend, family, social care worker, or volunteer from a recognised carer support charity, may come to your home to be with the person you look after for a few hours or overnight.  This can be occasional or regular, depending on your needs
  • the person you care for may go to a day centre regularly so you can have a break, or they may go to a care home for a short stay, on an occasional or regular basis
  • you may go on holiday together but to a specialist centre or hotel where they can provide care so that you have some time to yourself but you both benefit from quality time away from home.

Thanks to modern technology (mobile phones, email, social networking websites etc.), you can still keep in touch and can rest assured that you can be contacted if there is an emergency, so don’t be afraid to take a break.

Relaxation

It takes time and practice to learn to relax properly – and this doesn’t mean just sitting down watching television! True relaxation can help to clear the mind and reduce physical and mental strain.  Even just ten minutes each day can be very beneficial, so why not try the following routine?

  1. Find a quiet, warm room, where you won’t be disturbed, and sit in a comfortable chair with your feet flat on the ground or on a footstool.
  2. Move your shoulders in a circular rotation and make sure your head is in a comfortable position.
  3. Rest your hands in your lap and let your knees fall apart so your legs are relaxed.
  4. Take a deep sigh, close your eyes and concentrate on your breathing, slowing it down.
  5. Consciously relax each muscle, starting at the top of your head and working down to the tip of your toes, making sure you relax your face, jaw and tongue.
  6. Now sit still and quiet for the remainder of your ten minutes, before gently and slowly stretching as if waking from a deep sleep.
  7. Get up slowly and try to maintain the sense of calm as you continue your day.

Managing time

All too often carers feel a sense of having too many things to do, not having enough time to do them in and having no space in their schedules for themselves.  This can be a problem for many of us, but for carers the problem may be more acute and you might feel guilty if you take something off the ‘to do’ list or allow yourself some ‘me time’.

Looking at exactly what you do throughout the day can help in identifying how time can be better managed, tasks delegated, and how you can allocate periods for yourself.  One good way to do this is to take a sheet of paper and make a list, numbering one to 24, representing each hour of the day.  Against each number, or hour, write exactly what you have done throughout the last day, including sleep or lying awake in bed.  You can then review the list and identify tasks that perhaps could be done less frequently or delegated to a friend or other family member.  You may also be able to group tasks together to save yourself some time, for example doing all the upstairs tasks together to save you running up and down the stairs unnecessarily, or combining shopping trips with other appointments or activities.

Preventing accidents

Accidents within the home are more likely if a carer is overstretched and tired, but many can be prevented.  Thinking ahead and ensuring that your home is safe is very important, so make use of any specialist equipment that may be available, such as grab rails, walking and mobility aids.  Don’t try to decide what is and isn’t appropriate yourself – get specialist advice.

Simple measures, such as not leaving electrical flexes or rugs where they may be tripped over, checking fires and heaters regularly, ensuring good lighting on stairs, and installing smoke detectors, can dramatically reduce the risk of accidents.

For many tips and suggestions on keeping your home safe and making life easier (see Helpful hints).

Important

It is a good idea to think about what would happen in an emergency and have a plan in place. This might include key contact numbers by the telephone or front door or a personal alarm for the person you care for so they can summon help if needed.

Financial matters and legal rights

Many people are reluctant to talk about money but caring may affect your financial position. If you don’t feel financially secure you are more likely to worry and this may affect quality of life and the relationship you have with the person you care for.

You may find that your financial resources are limited because your income has been reduced since becoming a carer, so you will need to make sure that you get the most from the money you have, and take advantage of any benefits that might be available to you.  Prudent long term planning is important when caring for someone with a degenerative illness such as Parkinson’s, and remember to review your finances at least once a year, or whenever your circumstances change.

When thinking about finance, it is generally a good idea to take advice on various options and their merits from an impartial advisor who can help explain what can often be a complex matter – this may be a reputable independent financial advisor (personal recommendation is useful) or trained staff at your local social services office or citizens advice bureau.  Ask at your local doctor’s surgery if you are unsure where to start.

The Parkinson’s organisation in your country may be able to provide information based on members’ experiences. The EPDA website contains the contact details for European and International Parkinson’s organisations.

In many countries there is often legislation to support carers, so find out what financial benefits you are legally entitled to - this may involve a formal assessment. Pursuing benefits may be time-consuming and frustrating, or even intrusive at times, but in the long run the benefits that may result can be of great help in helping you to manage on a day-to-day basis.  Again, your doctor’s surgery or trained staff at your local social services office or citizens’ advice bureau should be able to provide information and further contacts.

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