No two cases of Parkinson’s are the same. Everyone reacts differently in
terms of the symptoms they experience, their response to medication and how the
illness progresses. When caring for someone with Parkinson’s it is very
important to understand as much about the condition as possible so that you are
prepared for the future.
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Educate
yourself about Parkinson’s - this will help you and the person you are
caring for make informed choices about care and treatment. Understanding as
much as you are able will ensure that you get the most from visits to
healthcare professionals. If you are fully aware of the needs of the person you
care for and the possible progression of Parkinson’s, you will be more able to
anticipate changes and be better equipped to deal with them. Being proactive in
planning ahead and preparing for change will help you stay in control.
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Managing medication - be sure that you understand what medications
the person you are caring for is taking and how they are administered. Your
healthcare professional may be able to provide you with a medications chart;
this can be a very useful tool to ensure that medications are taken correctly
and on time. Also, talk to the doctor of the person you care for or Parkinson’s
Disease Nurse Specialist (PDNS) about how doses can be altered to cope with
unusual or extreme situations, such as travel or sickness. For further
information on medications see Medication in Parkinson’s or the EPDA
website's Medical and Surgical Information pages.
Just as it takes time for someone with Parkinson’s to come to terms with the
diagnosis, so it may take time for a carer to come to terms with their new
role. It is quite normal for a carer to
experience similar symptoms to the person they care for, such as fear of the
future, anxiety, depression or confusion about the changes in their life and
relationship.
There is no standard template for the role of carer. One carer’s
responsibilities will differ from another’s and will be dependent on many
factors, including the abilities of the person they care for, the severity of the condition and how they
adjust as it progresses, the changes to their relationships and their own
physical and emotional circumstances.
Initially, caring may mean little more than giving encouragement and an
occasional helping hand, but over time it can develop into full-time, hands-on
assistance throughout all areas and activities of daily life. Whatever your
situation, it is important for you and the person you care for to discuss your
role and agree how best you can be of support. Both sides should be involved in
decision-making where possible. Be aware that roles may alter as Parkinson’s
progresses, requiring each of you to adapt and adjust to circumstances. This may be particularly true where the condition means that the carer provides intense physical assistance.
Some find being a carer puts a strain on other relationships. Try to involve
your partner, family and friends so that they do not feel squeezed out or
envious of the attention you need give to someone else. Communication is the key to maintaining
harmonious relationships and although this may become more difficult for the
person you care for, as their speech or facial expression may be affected, be
patient and make time to talk with them and express your feelings with each
other.
If you find your responsibilities overwhelming, do not struggle on alone.
Discuss your situation with your doctor or other health/social care
professionals - see ‘What help is available?’. Talking to other carers through a Parkinson’s or carers’
group can also be very helpful and there are many other useful resources for carers
– see ‘Where can I find more information?’
