ADVICE FOR CAREGIVERS

Whether you live with a Parkinson's patient, or help a family member or friend with Parkinson’s often, you likely face some of the issues associated with "caregivers."

As a caregiver, your state of mind and overall health can impact your ability to provide the care your loved one needs, at the level you want to give. It’s important to remember that you need to take care of yourself when taking care of someone with Parkinson’s disease, especially as they become more dependent on you.

Caring for someone who has Parkinson’s can bring with it a range of emotions. You may feel particularly loved and appreciated and may have a sense of pride in being able to provide care and support. On the other hand, there may be moments when you feel overwhelmed, sad or angry at the situation, or even frustrated with the person you care for. First, you should understand that these feelings are normal and nothing to be ashamed of. You are providing care, but you’re also part of a relationship. Like all relationships, this one will continue to require patience and understanding.

Caregiving can feel like a 24/7 job, and it is important to stay in touch with yourself by pursuing your own interests and keeping active. Asking family and friends for help, or finding professional in-home care, can give you time to yourself to reenergize and refresh. It can also give you and the person you care for new things to talk about and may help to reduce feelings of isolation.

There are also practical things that you can do to help your loved one get the best care.

  • Stay organized – Keep a record of your loved one’s medications, doctor visits and symptoms to make appointments more beneficial and efficient.
  • Know the limitations of your coverage – Educate yourself on your insurers’ practices for reimbursement of medical care so you can plan accordingly.
  • Do your homework – Gather information on Parkinson’s disease and treatment and care options so you can serve as your loved one’s advocate and help plan for the future.
  • Observe your loved one’s disease – Share with your loved one’s doctor if you observe symptoms such as motor function changes, mood/anxiety concerns or speech issues that your loved one may not notice or may not mention
  • Discuss important plans and decisions for the future– Talk about wills, advanced directives and other life issues.

Getting accurate information through open and honest conversation can make a difference in your loved one’s care. So it’s important to focus on communication between you, your loved one and their treatment team.

Learn more about building a care team
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