Talking to Your Adult Children About Your Advanced Parkinson's Disease

“Talking early and often helps you normalize tough topics, ease fears, and take control of a disease where much can often feel out of your control,” says Rachel Dolhun, MD, a neurologist and the principal medical adviser at the Michael J. Fox Foundation for Parkinson's Research.

By keeping your loved ones informed, you can also make sure that your treatment wishes are clear if your ability to communicate changes, says Nandakumar Narayanan, MD, PhD, a professor of neurology and Parkinson’s disease specialist with the University of Iowa Health Care. Below, learn some tips for talking to your adult children about Parkinson's disease and about how you might need them to be involved in your care.

Timing and Location

“First, know that these conversations rarely happen in one sitting, and information and preferences may evolve over time,” says Dr. Dolhun. “Let yourself off the hook to get to everything all at once.”

Think about the best time and place to talk, says Dolhun, who recommends having this conversation in a quiet, distraction-free space when your medication typically works best or when you have the most energy.

How You Want It to Happen

If having the whole family together can be overwhelming, think about scheduling a few meetings with smaller groups or with a few trusted advocates who can pass on the information to everyone else.

What You Want to Cover

You can also ask your Parkinson’s doctor for ideas, says Dolhun. “Ask what scenarios might be most likely for you or most important for you to discuss with your loved ones,” she says.

When talking to your adult children about advanced Parkinson’s, you can share some basic information about Parkinson’s, where you are in your journey, and what changes could be coming, says Dolhun. “Also share why you want to have the discussion and what you hope to achieve with it.”

How Your Parkinson’s Diagnosis Has Affected You

If your children don’t yet know that you have Parkinson’s, you can start by sharing your diagnosis and some basic facts about the condition.

What Parkinson’s Progression May Look Like

Next, you can explain how Parkinson’s typically progresses. You’ll want to share not only practical information (like what to do if something happens) but also the emotions surrounding your plans and the values and priorities driving your wishes, says Dolhun.

What You Need Right Now vs. Future Needs

Explain if and how your Parkinson’s symptoms affect your daily life and ask for help if you need it. Even if you don’t need assistance yet, you can talk about potential future needs.

“I’d start with the way you want to live,” says Dr. Narayanan. For example, if you want to live independently at home, then communicate that clearly, says Narayanan. “It’s also useful to discuss preferences around daily support, driving, home safety, financial planning, and long‑term care options.”

Legal and Financial Arrangements

Getting Prepared for an Urgent Need

It’s important to cover the critical information that your family would need to know in the event of an urgent medical event, says Godfrey, who recommends giving a trusted loved one a list of your medical history, current medications, and doctors.

“If you have a medical power of attorney, living will, or any other advance directive, be sure to review it and provide copies for anyone who is designated as a decision-maker,” says Godfrey. This will help you get exactly the care you want in any situation.

Leaving the Door Open for Future Conversations

Parkinson’s progresses on an unpredictable schedule, so plan on having more talks about new symptoms and needs. “It can be uncomfortable to think about the future when you have a progressive disease, but having these conversations early will allow for more time to plan, explore options, locate resources, and have more peace of mind in the long run,” says Janicke.

Don’t neglect your own emotions, either — think about how you’re feeling when thinking about the future or even about having these conversations, says Dolhun.

You can listen and validate but also guide the conversation back to cover the topics important to you. If everyone needs a break, take it and pick up the conversation after a few minutes or save it for another day.

After your first conversation, schedule your next one. Many people have a brief follow-up talk after each visit with the neurologist, says Narayanan. During each discussion, assign someone to take notes so you all have the information discussed.

“If you don’t know where or how to start or get stuck along the way, there are many who can help: your loved one’s doctor, a social worker, or a counselor or mental health professional,” says Dolhun, adding that palliative care can also guide this aspect of Parkinson’s management.

Janicke sometimes refers her patients to a geriatric care manager (also known as a private care manager or an aging life care professional), who can offer an unbiased perspective and help clarify needs and goals.

Godfrey also recommends online resources to guide these conversations, like Prepare for Your Care and The Conversation Project.

• It can feel difficult to talk to your adult children about a Parkinson’s disease diagnosis, but early, frequent conversations help you all prepare for the future.
• Together, you can discuss how Parkinson’s affects you, changes that may come, and how you want to live your life and receive care.
• You don’t have to plan this conversation alone — you can ask your doctor for resources or a referral to a social worker or other specialist who can help facilitate these talks.