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Balancing Work and Caregiving

People get diagnosed with Parkinson's at different phases of life. For some, they may be younger or perhaps the spouse or partner still needs to work and isn't near retirement age yet. However, caring for someone with Parkinson's can also be a full-time job, especially as the disease progresses to a more advanced stage.

It will be important to consider what options are available to you as a care partner who is still working. Financially, you will need to do what is best for you and your loved one, especially if insurance is a key benefit to you working. You may have to weigh out the options of hiring additional help while you continue to work, or determine if taking time from work will best benefit you and your loved one.

Many people are very hesitant to tell their employers about their new situation. Some may disclose the diagnosis from the beginning. Others wait until their loved one with Parkinson's has more advanced care needs. This is a personal choice. However, it may be helpful to see if your workplace offers any special accommodations for care partners.

  • Look into your company's personnel policies. Check your employee handbook or staff website or talk to someone from the human resources department to learn if your company offers programs or special assistance for care partners. If you are a union member, ask a union representative to help you negotiate with your employer.

  • Arrange a meeting with your manager if you wish and prepare for it in advance. Before you approach the meeting, decide if you want to discuss your situation as a care partner, or if you want to go further and request specific job accommodations. Jot down the most important points you want to address.

  • Be upfront and positive. When you meet with the supervisor, highlight your strengths and contributions to the company. Indicate your willingness to work together to identify potential accommodations to help you continue to do your job while maintaining your role as a care partner.

  • Get it in writing. Send an email to your manager or HR representative with your understanding of the agreed-upon conditions. This will give everyone a reference point.

Later, if you consider leaving work altogether to accommodate your care duties, consider the following steps:

  • Explore your options. What are your alternatives to resigning? For example, can you take a break or retire early? Will your employer let you work remotely, or part-time? Would you want to consult or freelance on a schedule that is more suitable to your needs?

  • Take the time you need. The Family Medical Leave Act (FMLA) entitles eligible employees to take unpaid, job-protected leave for specified family and medical reasons. During such leave, group health insurance coverage continues under the same terms and conditions as before the leave. Eligible employees are entitled to 12 weeks of leave in a 12-month period to care for a spouse, child, or parent with a serious health condition.

  • Understand the repercussions of your options. Ask yourself: Can I manage with less money (and any effect on a pension or retirement plan)? Do not take this decision lightly. Think about the current and future loss of income if you leave your job. How would that impact your long-term care plan? In addition to the possible financial consequences, you should consider the potential loss of independence, social contact, and valuable skills. This may cause sadness or resentment. At the same time, the person with Parkinson's may feel bitter about his or her own loss of independence. Both of you must come to terms with these changes and these emotions.


Parkinson's Foundation. Page 20. Balancing Work and Caregiving. Chapter One. Early in the Journey: Your Care Partner Identity. Caring and Coping. A Care Partner's Guide to Parkinson's Disease. "Booklet."

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