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.
You can tell your children that the average life expectancy of someone with Parkinson’s is the same as an average person without the disease, and everyone progresses at different rates. But you can also tell them about possible worsening symptoms and complications down the line.
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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
Since advanced Parkinson’s can affect your communication and thinking, it’s important to have your health decisions and wishes confirmed in a legal document called an advance directive. This could include assigning a power of attorney, who can make medical decisions for you when you can’t.
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If setting up the legalities can feel difficult or stressful, you can ask your healthcare provider how to set this up. They may recommend speaking with a social worker, who can help guide the process.
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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.
