Keeping a diary
Keeping a diary can be very useful so that you can record how you cope with caring, what you do, how long tasks take and anything that you find particularly difficult. This can help to identify problem areas and priorities which can be useful for doctor’s appointments or for any assessment required in order to access support. How you record this information is entirely up to you – either a written account of each day in a notebook or you may prefer an electronic spreadsheet to track activities each day and how you cope with them. Some carers find that having a record of activities can bring more structure to their caring role and help them to manage their time better, which in turn can improve wellbeing.
See also, Parkinson's UK 'Keeping a diary: for carers' information sheet.
Make sure you book an appointment with your doctor as soon as health problems cause concern to ensure that they are treated quickly. Minor ailments should be treated promptly so that they don’t develop into something more complicated. Unfortunately, because of time constraints, your medical needs are unlikely to be the focus during regular Parkinson’s check-ups, so make sure that you book separate appointments for yourself when needed.
Plan for your appointment, writing down points to raise in priority order in case you don’t have time to cover them all. Discuss your caring role with the doctor and be honest if you are finding it hard to cope and need help. If you keep a diary (see above) remember to take this with you. You may find it helpful to take a friend or family member with you if you need moral support or someone to take notes.
Remember to get regular health checks such as:
- eye tests
- hearing tests
- dental check ups
- screening tests (sometimes only from a certain age) - e.g. breast and cervical screening
- blood pressure - as this may sometimes be raised due to the demands of caring.
A balanced diet is essential to keep you healthy and fit for daily life. 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 among 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 the NHS.
Some carers find it helps to plan and prepare meals in advance by making extra portions and keeping them in the freezer. 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 Eating well.
Try to develop a regular exercise routine. Not only will this help your fitness levels, it will also encourage the release of endorphins that help to reduce stress and prevent many conditions including heart disease, high blood pressure, arthritis, osteoporosis and stroke. Join an exercise group, or simply include walks or other exercises in your daily routine. Some techniques, such as Pilates, yoga and Tai Chi, have additional psychological 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!
- 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 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 which helps with fitness!
- 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 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 so 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 as swimming, walking and gardening.
- Allow time for your mind and body to relax after exercise.
- Don’t give up easily! 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.
- 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.
Coping with cognitive difficulties
Many carers find it difficult to cope with cognitive changes in the person they care for. Parkinson’s can make it hard to think clearly, focus properly and multi-task. Cognitive difficulties can be affected by medication or by underlying medical conditions such as infection, vitamin B12 deficiency or thyroid imbalances. Parkinson’s can also affect sleep which in turn can impact on cognitive functioning and mental wellbeing.
How you deal with this will depend on whether the person you care for is becoming anxious or frustrated about the difficulties they experience. If they are, then they may welcome your help, or it may be better to let them accomplish tasks independently, perhaps with your help in breaking activities down into manageable steps.
It can be difficult to know what to do if the person you care for is unaware of their cognitive decline, or is in denial. How you deal with this will depend on your own circumstances but it is important to discuss cognitive problems with your doctor so that they can try to find the cause and treat as appropriate. Exercise, including mental exercises such as crosswords, Sudoku and other puzzles can help with mental agility.
These non-conventional health treatments, when used alongside traditional medicine, can be hugely beneficial for people with Parkinson’s, but can also have many benefits for carers. For example:
- Alexander technique can improve posture and provide ways to help with safely moving the person you care for (turning them in bed etc.) to reduce strain, particularly to your back
- Aromatherapy can help to revitalise and relax. A massage using carefully chosen essential oils can be very therapeutic and enhance a sense of wellbeing
- Healing can, in its many forms, bring a positive energy and sense of optimism
- Homeopathy can be beneficial for both emotional and physical complaints
- Reflexology can improve blood circulation and speed up the elimination of harmful toxins. It can also help you to relax and reduce stress
- Tai Chi can help with relaxation, whilst improving posture and mental function
- Pilates strengthens the core muscles (the abdominal and back muscles), which are important if you have to lift and move the person you care for
- Yoga is thought to help energise the body and mind, improve concentration and reduce stress.
For more information see Complementary therapies.
Looking after your back
Caring for someone 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 you injuring yourself.
- Avoid activities that will cause damage or make existing back pain worse, such as heavy digging, lifting objects from high shelves and carrying awkward objects.
- Think before lifting – make sure you are capable of lifting something safely as many back injuries result from improper lifting.
- Try not to twist or jerk your spine when lifting as this is more likely to cause back strain.
- Regular exercise can help to keep you mobile and build up the core muscles which support the back. Inactivity may increase stiffness and 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 or occupational therapist can advise further.
- Watch your weight – being overweight tends to increase the chance of getting low back pain.
- Try to develop good sleeping posture – a firm but not hard mattress offers your back the best support. If the bed sags when you lie on it, think about getting a new mattress, or alternatively some people find placing a firm pillow under the mattress where it sags can help.
Protecting your back - standing
Ensure good posture at all times, with your head up and shoulders straight – avoid slouching.
Protecting your back - lifting
Keep object close to the body and avoid twisting.
Protecting your back - sitting
Ensure your back is supported at all times, with a well-supported chair or cushion in the arch of your back.
Protecting your back - sit rather than bend
Avoid bending wherever possible. Raise work surfaces so you don’t have to bend.
Protecting your back - kneel if working near to the ground
Sit rather than bend over.
Looking after your 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, talk to your doctor who may refer you to a podiatrist (also known as a chiropodist) 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 Foot care.
Accidents within the home are more likely if you are 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 cables or rugs where they might be tripped over, ensuring good lighting on stairs and installing smoke detectors, can dramatically reduce the risk of accidents.
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 call for help if needed. Speak to relatives or neighbours about any support they can give in an emergency.
For tips and suggestions on keeping your home safe and making life easier see Helpful hints.