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Value your partnerships
The partnerships you form with the healthcare team, family members, and friends
play a major role in meeting the challenges of Parkinson's disease. As a caregiver you should feel able to talk openly and confidently to both healthcare professionals and the person for whom you are caring. Try and explore language that works—good communications between yourself and the person with Parkinson's disease is very important.
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Take charge of Parkinson's disease
Ideally, try and take an active rather than a passive role in Parkinson's disease. Work with the person you are caring for to learn all about the condition—its causes, symptoms, and treatments. The more you understand, the easier it will be to work through day-to-day problems.
In your role as caregiver you are a central part of the healthcare team ensuring
that the person with Parkinson's disease receives the best treatment possible. Other good information sources include Parkinson's Disease Society magazines,
books, news articles, Web sites, and local patient organizations.
Try to find the most knowledgeable and experienced physicians and health
professionals in your community—people with a real interest in Parkinson's disease. It is important that the person with Parkinson's disease visits their doctor regularly for checkups. Whenever possible, go with them so that you can discuss any symptoms, observations or concerns that you may have with their doctor.
Physicians, nurses, occupational therapists, physical therapists, dietitians, speech and language therapists, and social workers are just a few of the people who can help you with the many aspects of providing care for someone with Parkinson's disease.
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Learn about the medications for Parkinson's disease
Medication management is the most important part of controlling Parkinson's disease symptoms—a good knowledge of what to expect from these medications can be extremely helpful. Always ensure that the person with Parkinson's disease takes their medication exactly as prescribed—keep an accurate list of these medications and when they should be taken.
Never make any changes to these medications without consulting an appropriate
healthcare professional first. However, because everyone's treatment
requirements are different, the specialist may encourage some experimentation
with regards to the quantity and timing of drugs, within certain limits. If you are
worried or have any questions, don't be afraid to ask your doctor or pharmacist
for advice.
It can help for the person with Parkinson's disease to keep a record of their treatment, including its effectiveness as well as any side effects. Provide them with any help they may require in keeping this medication schedule and add your own observations—there may be things the person with Parkinson's disease does not notice themselves.
It is important that you learn to recognize changes in symptoms that may, for
example, indicate that the person with Parkinson's disease is experiencing wearing-off of their medication.
Wearing-off gives rise to periods of time when symptoms including tremor
(shakiness or trembling in the hands, arms, legs, jaw and face), rigidity (tightness
and stiffness of muscles), and bradykinesia (slowness of movement) are no longer constantly controlled by medication.
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Set realistic goals
Try not to expect too much from the person with Parkinson's disease—recognize what they can and can't do. Be open to new technologies and ideas that promote the independence of the person for whom you are caring. Plan ahead—remember that daily tasks may take longer than they used to.
A person with Parkinson's disease will have both 'good' and 'bad' days. On bad days try to listen, be patient and understanding. Allow them the time and space to accomplish the tasks that they set themselves.
The symptoms of Parkinson's disease are generally made worse by anxiety, stress and pressure—try and be a calming influence and don't pressure them to speed up or try to do the tasks for them.
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Encourage exercise
Regular exercise can increase the benefits of Parkinson's disease medication, fight depression and promote an overall sense of well being. A physical therapist will be able to recommend exercises and stretches.
Whenever possible, encourage the person with Parkinson's disease to engage in simple activities that they enjoy, such as walking, gardening, and swimming and to make those a part of their daily routine. It may be helpful and enjoyable to do these activities together.
Some days may be hard for the person with Parkinson's disease. Let them exercise at their own pace, even if it seems slow, and try to encourage them if they are having difficulties. Don't feel that you have to stick to a rigid schedule. Instead, help the person you are caring for to exercise when it is best for them—for example, when their medications are working well and movement is easier.
Complementary therapies such as physical therapy, the Alexander technique, yoga, or tai chi are ideal exercises for people with mobility needs. Look for organized classes at your local gym or community center.
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Express your emotions
As Parkinson's disease progresses, one of the toughest challenges for everyone involved will be coping with emotions. If you are able to, try to talk through problems and don't be afraid to express your feelings. Be honest with yourself and the person with Parkinson's disease—open communication will foster a healthier relationship between you. You may find it beneficial to talk about ways you can help relieve stress, provide physical assistance, and meet any special needs.
Feelings of guilt are normal and common among caregivers—you have a hard and demanding job. When you feel guilty, ask yourself if doing more is really necessary or possible. Accept your limits. If things become overwhelming, consider talking to a counselor. A counselor can provide individual or family counseling about how to adjust to the changes Parkinson's disease is making in your life.
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Adapt the home environment
If a person with advanced Parkinson's disease is to remain at home, modifications such as railings and ramps may be useful. Try to maintain clear paths through the home of the person with Parkinson's disease to help them avoid tripping or falling over and so that they do not have to walk around furniture.
You might find it useful to arrange a consultation with an occupational therapist
or a physical therapist—they can provide additional information and assistance in
improving safety in the home.
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Long distance caregiving
Sometimes you may not be living in the same town or country as the person
with Parkinson's disease and will have to play a caring role from a distance. An important part of long distance caring is to remain in regular contact—if possible, set a designated day and time to call.
Long distance caring is more likely to occur during the early stages of Parkinson's disease when the person is less likely to be physically dependent on others. During this time, care will primarily consist of understanding and emotional support. Financial help may be of great assistance—try and inquire tactfully but clearly whether you can help out financially.
Plan ahead—try and anticipate problems that may arise in the future, not only
in the progression of Parkinson's disease, but also changes in your life which may make a difference to your future availability as a caregiver.
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