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 multidisciplinaryteam (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 also help you to develop skills to
cope as Parkinson’s progresses and can refer you to appropriate support
organisations. 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
- speech
and language therapist
- Parkinson’s
Disease Nurse Specialists (PDNS)
- dietician
- continence
advisor
- pharmacist
- podiatrist
or chiropodist
- psychologist
- psychiatrist.
For more
information on the professionals who can help you both, such as those listed
above, see the multidisciplinary team.
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. For more information see http://www.rewritetomorrow.eu.com/en/hospitalAdmissions/leavingHospital.htm
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, financial 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
‘Where can I find more information?’ for suggestions and
contact details.
Complementary
therapies for carers
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:
-
the Alexander technique can improve posture and provide ways to
help with moving the person you care for (turning them in bed etc.). 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 to 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.
