Caring for a Person with Parkinson's Disease

Caring for a person with Parkinson's is a path in which the caregiver must learn to be flexible to adapt to situations, while still offering good care or neglecting himself.

In principle, caring for a person with Parkinson’s disease is about understanding the disease in depth and planning strategies to facilitate the day-to-day life of the person who’s suffering from it. However, it’s also about learning to cope with challenges from a flexible perspective and practicing self-care at the same time.

According to The Michael J. Fox Foundation for Research, being a good caregiver is essential to the well-being of the person with Parkinson’s, but it can be challenging at times. For this reason, caregivers are recommended to take into account the aspects that we’re going to look into below. Together, they’ll help to maintain a healthy relationship and provide good support.

Get informed and learn

The caregiver of a person with Parkinson’s must have a thorough understanding of the disease. This implies knowing how it affects a person on a physical, emotional and psychological level, as well as the person’s needs, the way they interact, sleep and express themself.

To learn more about the disease, you can access information resources that Parkinson’s associations and organizations make available to the public. Among these, it’s possible to find resources specially oriented to caregivers.

It should be noted that learning and becoming better informed doesn’t mean that the caregiver should aspire to knowing as much or more than the doctor in order to offer that care. However, it does mean that they must go beyond just the basic information to be able to face the challenges that may arise in the best possible way. The more you know about the disease, the better you can navigate each challenge.

• Specialists can be consulted for more information on how to care for a person with Parkinson’s disease.
• Preparing a list of questions can be helpful before you visit your doctor.

Know how to adapt

Caring for a person with Parkinson’s disease involves not only being well informed, but also being patient and flexible. This isn’t only because the disease can become very unpredictable, but also because different ups and downs can occur on the same day that, to a greater or lesser extent, will change your plans.

• Planning in advance is recommended, but always from a flexible perspective, which allows room for change and helps to cope with them.
• The most important thing is to maintain punctuality with the medication and the appointments with the doctor. The rest can be adapted.
• Maintaining a flexible attitude will be key in promoting the well-being of the person with Parkinson’s.

Observe

As the disease progresses, the person with Parkinson’s may deny or be unaware of the changes and new limitations. For this reason, the caregiver must be attentive and inform the doctor about it. This will help you to offer better day-to-day care, adjust the treatment and, of course, prevent complications (such as a fall, for example).

• Even when the person puts up some resistance, it’s essential to keep the doctor informed of the progression of the disease.

Face challenges

In addition to being attentive to new limitations that arise over time in order to inform the doctor about them, it’s a positive step to help the person to play some sort of role in their own care, and for them to maintain some responsibilities.

Helping with their own self-care will help them feel useful and in control of their well-being, which in turn will help them maintain their psycho-emotional health.

• Helping the person to recognize their limitations and coordinate strategies so that they can carry out some tasks is part of good care.
• It’s advisable to maintain good communication with the doctor, physiotherapist, occupational therapist and psychologist when coordinating strategies, so that these are the most appropriate ones.

Let off steam and take care of yourself

Caring for someone with Parkinson’s disease can be a great source of pride, but it’s still challenging and sometimes exhausting. For this reason, The Michael J. Fox Foundation for Researchers recommends that caregivers take the following into account:

• There’s no perfect caregiver. It’s normal to feel tired and have ups and downs at times.
• Taking time off to relax and attend to your own affairs is necessary and healthy. Doing it regularly will help provide good care.
• It isn’t necessary (nor recommended) to forget your own health or interests or life beyond Parkinson’s disease. Going out with friends, exercising, and spending time on hobbies are just as important and beneficial as the rest itself.
• It’s important to let off steam and request relief whenever necessary. In order to do this, it’s possible to request the help of family and friends, or external professional help (for household tasks, for example).

Caring for a person with Parkinson’s disease from a perfectionist attitude can lead to total burnout. For this reason, caregivers are recommended to take into account all the points mentioned above and, in case of doubt, consult a specialist.