Carers

What is a carer?

A carer is someone who takes regular, on-going care of a family member or friend who needs help due to illness, age or disability. A carer can be anyone – of either sex, or any age - and is generally unpaid.

Lots of carers do not like the term; they see their role as a natural extension of the relationship they have with someone important to them. Some do not like to be labelled in this way and others don’t like to ask for help and so go unnoticed. For these reasons, a large number of carers are not identified as such, together with the fact that professionals often fail to recognise the role. In many countries, however, there is a growing awareness of the importance of carers in society, particularly as life expectancy rises, and so carers are deservedly gaining more recognition.

Many people become carers because they want to help a relative, friend or loved-one or perhaps there is no one else who can assume the role so they have little choice. For many it can be a very rewarding experience, but it can also be a hard life. Often the responsibilities and tasks involved are extensive and if finances are tight, or the carer feels isolated or has their own health problems, caring for another person can be difficult.

What help is available?

Assessing your needs

Considerable help may well be available, but when you are busy caring, it is not easy to find time to research and understand what help is at hand. This may seem like just another job on a long list, but it is important to find out about and take advantage of help that is out there, as this will make your role easier and more sustainable in the long term, and it will also benefit the person you care for too.
In many countries a formal assessment will be made of both your needs and those of the person you care for, so that the support each of you requires can be identified. If and how an assessment is made will depend on the country in which you live, but in general an assessment can lead to:

• recognition of your role as carer
• the provision of specialist equipment or modifications to your home to make everyday life easier
• help in the home with everyday tasks
• day care or respite care
• assistance with transport
• information about organisations and services that can support you
• social or leisure opportunities
• financial aid.

Being assessed does not mean that the standard of care you provide is judged, so don’t be afraid to ask for an assessment. Talk to your doctor if you are not sure who you need to speak to in order to arrange this, or ask at your local social services or citizens’ advice bureau.

The multidisciplinary team

There are many professionals within the multidisciplinary team (MDT) who are there to support both you and the person you care for, and together they can help with maintaining independence and quality of life, as well as keeping you in good physical and mental health. They can refer you to appropriate support organisations and your doctor, social worker or others involved in looking after the person you care for may refer you to one or more of the following:

• occupational therapist (OT)
• physiotherapist
• dietician
• pharmacist
• podiatrist or chiropodist

Below are some suggestions which may be helpful in ensuring that you make the most of the help the team can provide:

• make sure your doctor and the surgery staff are aware that you are a carer and that this is highlighted on your file
• if the person you care for has difficulty waiting in the surgery or hospital for appointments, inform staff when you book; ask for an appointment that is most likely to have a short waiting time
• make sure the doctor knows that the person you care for agrees to you discussing their problems should you wish to
• write down questions you want to ask at the appointment, and take notes during the consultation to refer to later
• should you be worried about coping or angry about your situation, ask your doctor if you can be seen by a counsellor
• if collecting prescriptions is difficult, ask if they can be delivered to you or dispensed somewhere more convenient for you to collect
• plan carefully if the person you care for is to be discharged from hospital and discuss their needs and limitations in detail with the hospital staff prior to discharge. 

Other support and advice organisations

There are many organisations and groups outside the MDT who can also provide practical help and advice on various aspects of caring, for example:

• government advice and information offices, for example on benefits and legal entitlements
• your local housing office
• counselling services
• carers, disability and mobility organisations
• voluntary organisations and services
• religious or charitable organisations and services
• private agencies (but always check the cost involved as charges can be high).

Your doctor’s surgery, local government office, library or local newspaper may have contact details for these, or you can look on the internet. You can also look in ‘Useful Links’ for contact details.

Complementary therapies for carers

These range of wide non-conventional health treatments, often based on ancient systems, which many people use alongside standard Western medicine offer a holistic approach (treating the patient as a whole, rather than just addressing the symptoms). It is this approach which makes complementary therapies so appealing. When used alongside traditional medicine, they can be hugely beneficial for people with Tremor, but can also have many benefits for carers. For example:

• the Alexander technique can improve posture and provide ways to help with moving the person you care for. With guidance, a carer can develop movements to reduce physical strain on themselves and avoid problems such as bad backs
• aromatherapy can help to revitalise and relax. A massage using carefully chosen essential oils can be very therapeutic and enhance a sense of wellbeing
• energy healing can, in its many forms, bring a positive energy and sense of optimism
• homeopathy has very wide uses and many people find it 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. d you know?

The Carers (Equal Opportunities) Act, which was implemented in the UK in 2005, places a duty on local authorities to make all carers aware that they have a legal right to an assessment of their needs.

How do I tell if it’s working?

Be sure that you know how you hope to benefit from the treatment and ask your therapist for a treatment plan and cost estimates. Your practitioner will also explain what signs of progress to look out for. You can then monitor progress and decide if it is having any beneficial effects.

Whilst you shouldn’t continue with treatments indefinitely, waiting for something to happen, it may take time for any noticeable improvements to be seen. As such, you will need to weigh the benefits against the time and money spent. But remember, if one therapy does not work, another might, so it might be worth trying a few to see if you can find something that works for you personally.

We would like to acknowledge the use of information taken from European Parkinson’s Disease Association website www.rewritetomorrow.eu.com