Considerable help may well be available, but when you are busy caring, you may feel you do not have the time needed for researching and finding support, and understanding what help you can access. This may seem like just another job on a long list, but it is important to find out about and take advantage of any available help, as this will make your role easier and more sustainable in the long term. This will also benefit the person you care for.
"You’ll find different people can offer you different types of support. It could be a good friend you can share some regular “non-caring time” with, a family member you can chat with on the phone at the end of a hard day, or a local care agency that can look after your loved one for a few hours each week." *
Assessing your needs
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 you each require can be identified. If and how an assessment is made will depend on where you live but it is usually useful to prepare so that you get the most out of the assessment, particularly as your assessor may not know a lot about Parkinson’s. Assessments generally take place at home, in the usual caring environment, but this may not always be the case.
- Make a list of what help you feel you most need, for example someone to come in to help with washing, dressing, or getting the person you care for ready for bed, a meal delivery service, or just someone to give you time out for yourself.
- Write down any tasks that are particularly difficult so that the assessor can think about aids that may help.
- Make notes to explain your daily routine and the caring tasks that you carry out. Add timings too if you can. Let them know of any night-time problems which disrupt your sleep.
- Talk to the assessor about the emotional impact of caring, particularly if you feel you are becoming overwhelmed or depressed.
Outcomes vary depending on where you live and your individual circumstances but in broad terms 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 assistance.
Remember, being assessed does not mean that the standard of care you provide is judged, so don’t be afraid to ask for an assessment. If you are not sure who you need to speak to, talk to your doctor or ask your local social services or citizens’ advice office how to arrange this.
If you are under 18 years of age and help to support someone with Parkinson’s, either on your own or with other family members, you are known as a ‘young carer’, and you, or your parents, should always let your doctor know about this.
As a young carer, you may have different needs to older carers. A carer’s assessment will help to identify these needs and provide appropriate support. If you are still at school or college, help may be available to enable you to continue your studies. In many countries, there are also specific support groups and projects to enable young carers to share experiences and help each other.
Although you may find it difficult to talk to people about how caring affects you, it is important to find someone you trust who can listen and help you find the support you need. This may be someone from the Parkinson’s care team or an independent support organisation. Your doctor’s surgery should be able to provide contacts or you can look online.
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. Together they can help with maintaining independence and quality of life, as well as keeping you in good physical and mental health. The more support the person you care for receives, the more you will be able to sustain your role as a source of support for that person. The MDT can also help you to develop skills to cope as Parkinson’s progresses and can refer you to appropriate support organisations as the need arises. Professionals who can help include the following:
- Neurologists and doctors directly influence the care you both receive and can refer you individually to other services.
- Parkinson’s nurse specialists are available in some countries and act as a bridge between you and your doctor, advising on all aspects of Parkinson’s and services that can help you and the person you care for.
- Occupational therapists offer practical advice and can suggest physical aids that will help with everyday tasks such as dressing, eating, writing and using a computer, and so help to maintain independence.
- Physiotherapists help with moving a person safely and independently. A physiotherapist’s role is to prevent, stabilise and reduce movement-related problems.
- Speech and language therapists help with speech, language or communication difficulties. They can also help with eating, swallowing and drooling problems.
- Dieticians advise on a healthy diet and specific dietary needs, including advice on maintaining a healthy body weight.
- Continence advisors are specialist nurses who can help with incontinence problems and advise on helpful products and aids.
- Pharmacists can advise on medications and answer your queries or concerns about possible side effects of medication They are not generally be involved in adjusting or altering your medication – this is usually done by your doctor.
- Podiatrists or chiropodists diagnose and treat disorders of the feet. They also advise on the most appropriate footwear to cope with walking problems, such as falls and freezing.
- Psychologists can talk with you and your family about emotional and personal matters, helping you overcome emotional or psychological challenges that arise when living with Parkinson’s.
- Psychiatrists are specialist doctors who treat mental health issues and disorders, such as anxiety and depression.
For more information see Creating your healthcare team.
Below are some suggestions which can help you to make the most of help that 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 medical notes.
- 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 and take notes during the consultation to refer to later.
- If you are 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. For more information see Hospital admissions.
Other support and advice organisations
There are many organisations and support groups outside the MDT who can also provide practical help and advice on various aspects of caring, for example:
- government advice and information offices, particularly those dealing with benefits, financial and legal entitlements
- your local housing office
- counselling services
- carer, disability and mobility organisations
- voluntary organisations and services, including Parkinson’s carer support groups
- 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 also have contact details or you can look on the Internet.
Our thanks to AbbVie for permission to use the following source in compiling this information: Caring for YOU! The following PDF is an extract from the ‘Caring for YOU!’ series of magazines for caregivers.
Who cares for you?
* This selected quote is taken from the ‘Caring for YOU!’ series of magazines for caregivers. Our thanks to AbbVie for permission to share this content.