Fear of the Future: Caring for Someone with Parkinson’s

As a chronic and progressive disease, Parkinson’s disease (PD) is emotionally taxing for both the person who has it and their caregiver. In Health Union’s Parkinson’s Disease in America 2017 survey, caregivers admitted they fear the long-term complications of the condition.

The emotional toll on caregivers is significant, both from the daily, increasing responsibilities of caring for a loved one, as well as dealing with the progressive, debilitating nature of PD.

Common fears felt by caregivers

Some of the biggest fears caregivers identified in the survey included:

  • What will happen in the future?
  • What if I’m not capable of handling everything my loved one needs?
  • Who will care for him/her if I no longer can?

In addition, there are common fears about Parkinson’s disease itself, including the risk of falls, being physically unable to lift the patient, and changes that occur in the loved one’s personality due to cognitive impairments, memory loss, or dementia.

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Fear is a natural reaction to any scary situation, and PD can be frightening. There are consecutive losses that are experienced by the person with PD as well as by the caregiver, and the relationship between the 2 people changes.

Knowing that PD will continue to change the person, it’s natural to have fear about what’s to come. And while your team of doctors can give you some idea of what to expect, every person’s journey and experience is unique, there’s a lot of unknowns.

Managing fear of the future

Acknowledging its presence - The first step in managing fear is acknowledging its presence. Recognizing what we are feeling, without trying to change it or taking any action, is important. This state of awareness of your own feelings helps bring you into a present moment state. Try to focus on the physical feeling of the emotion in your body, noticing where it is and what sensations it causes. If the focus on fear also brings up sadness, allow the emotions to flow.

Be mindful of your thoughts. Fear of the unknown is the mind jumping ahead to what if’s. Bring your attention back to the present moment. How are things in this moment? The present is all we ever have any control over.

Find your inner peace. When our minds go into fear and our thoughts run wild, we lose the ability to think creatively or clearly. Experiment with ways to come back to a place of peace within. Mind-body techniques, meditation, acupuncture, yoga, and breathing techniques can all help. A simple loving-kindness meditation can also bring peace to you and others.

From the place of peace, determine what your fear is trying to tell you. Fear is just an emotion that is trying to help you. What is your fear trying to tell you? Is there anything you can learn, prepare, or take action on now?

About the In America survey

The Parkinson’s Disease in America 2017 survey fielded by Health Union gathered data from over 1,100 patients and 440 caregivers. The data illustrates the challenges both patients and caregivers face as they navigate the journey of diagnosis, symptom management, medications, and the effect of Parkinson’s on their lives and emotions.

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