The Emotional Impact on Care Partners
As a care partner, you’ re focused on your loved one’ s health and well-being. It can be easy to forget to take care of yourself, and you may feel lonely, fatigued or burned out. Not everyone will experience fatigue or burnout, but it’ s important to know the signs. Don’ t ignore them: Take steps to address them as soon as they occur so you can maintain your own health and well-being for the long haul.
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Loneliness and Isolation
Life as a care partner can feel lonely and isolating. Loneliness is a sense of being disconnected, even when you are around other people. You can be happily married and still feel lonely. Isolation comes from not feeling connected to others, whether through romantic partnership, close friendship or larger community. Feelings of loneliness and isolation don’ t just make us feel bad; they are bad for our health. They can increase stress, anxiety and depression, and decrease quality of life.
Many care partners say they feel alone in their experiences and cut off from others— sometimes even their loved ones. This might be a result of symptoms that interfere with social activities, changes in relationships where people are around less or act differently or simply a lack of time. It may also be a result of stigma or misconceptions around Parkinson’ s disease.
Stigma around Parkinson’ s can touch care partners just as much as a person living with the disease. Friends, coworkers and strangers may not understand Parkinson’ s and its symptoms; they may make awkward, hurtful or unhelpful comments. You may feel embarrassed, frustrated or left out. These experiences can make it harder to stay socially connected, adding extra weight to an already challenging role.
You can combat stigma with education: Let others know what Parkinson’ s is, what it looks like and how symptoms affect your loved one. But it’ s equally valid to not want to explain; you can come up with a go-to response to change the subject(“ I appreciate your questions, but I’ m much more interested in hearing how you’ re doing!”) or point people to credible resources— like The Michael J. Fox Foundation— to learn more. Reach out to your support network and other care partners as well; they may have suggestions for addressing stigma, too. Turn to the Resources for more.
Strategies to Ease Loneliness and Isolation
Prioritizing positive, meaningful connections with yourself, your loved one and others can help ease loneliness and isolation. For example:
+ Schedule a regular check-in with yourself to assess how you’ re feeling.
+ Plan an outing outside of the home once a month.
+ Get to know those you see regularly, like your loved one’ s physical therapist or your mail carrier. Mini moments of connection count.
+ Join a support group or meet with another care partner one-to-one.
+ Volunteer for a cause you enjoy.
+ Take an exercise class or join a book club.
+ Engage in faith-based activities or community, if that suits you.
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