When Help Isn't Wanted

Sometimes those living with Parkinson's and their primary care partners will refuse help despite the fact that they probably need it. This can be very frustrating for those wishing to offer help. A primary care partner may also get frustrated with their loved one living with Parkinson's if they choose to refuse their help. This can be difficult to navigate.

​

If your loved one with PD has chosen to refuse treatment altogether (including medications), you might tell them that research has shown that they may be able to slow the progression of the disease if they start treatment sooner rather than later.

​

If they are taking medications for their PD but are still requiring some help with their daily activities, you may suggest a home support worker, or someone who could help them out from time to time (like a family member or friend).

​

This might be a good option for them, especially if they are afraid of losing their independence. The support worker (or family member/friend) could come on a trial basis, and that way the person with Parkinson's could see for themselves the benefits of having outside help.

​

Communicating clearly and compassionately is important. It takes finding a delicate balance between respecting the person living with Parkinson's or the primary care partner and offering help. At the end of the day, they are the captain of their own ship. Express to them your concerns about their refusal of help. Would they be able to help themselves in an emergency? They need to know that in the end, help is there to make them feel better, not worse. Also, consider the benefits of the help being offered and sell them on it. Make sure they realize it isn't a burden to you, and that you are HAPPY to do it.

​

Sources:

Maria, Lianna. Page 187. When Help Isn't Wanted. Chapter 61. The Complete Guide for People with Parkinson's Disease and Their Loved Ones. Purdue University Press, 2022.