Sometimes those living with Parkinson's will refuse help from their care partners even though they may 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 all together. This can be difficult to navigate.
Additionally, your loved one may even become resentful to your help. It can be easy to get frustrated and take this personally depending on their reaction and behavior toward you when you are only trying to help. Try not to take it personally. Try to put yourself in their shoes. Think about how frustrating it would be for you to want to do something as simple as buttoning your shirt or tying your shoe and getting frustrated that you can’t or you are struggling to do it.
Often, we think we know our loved ones in and out. Afterall, for some of us we may have been married for 40+ years to one another. We may think we know each others thoughts, and can even complete each other’s sentences. But when Parkinson’s enters the picture, it can change those thought processes, moods and even behaviors and reactions.
Knowing when to step in and intervene can be very difficult. We want our loved ones to be as independent as possible for as long as possible. Sometimes it means just stepping back and letting them do it. If you see they become frustrated, start with communication before jumping in to help. This can be challenging and requires a great deal of patience on the care partner’s part. We know we could get it done in a matter of seconds. But for our loved ones, the actual act of trying to do it themselves is good for them physically and emotionally.
Perhaps you might try this approach. Should you see your loved one struggling to button their shirt, ask: “Honey, I notice that you are frustrated when trying to button your shirt. Would you like my help? I’m happy to help at any point you want me to, but I also want to respect your independence to do it yourself.” This gives them the choice and they can let you know if they prefer for you to automatically intervene or let them keep trying. For some, they may not be asking for your help simply because they don’t want to be a burden to you. Others may be adamant to do it themselves out of respect to their own dignity and independence. Let them choose when to ask for help. But know it is also ok to offer.
If they do choose to keep trying, consider giving yourself more time to get places you need to go and start the “getting ready” process earlier.
In some cases, our loved one is making choices that truly impacts their ability to live a quality life with Parkinson’s. Perhaps they refuse to exercise, or do not take their medications in a timely manner. This is extremely frustrating for us as care partners because we know that their choices are impacting their quality of life – and in turn, those choices are also impacting our life as their care partner.
Keep in mind that apathy is a true symptom of Parkinson’s. The fact that they may not be motivated to want to do what needs to be done can be part of the condition, not just a refusal to be difficult. This is when you might want to consider a conversation with your loved one to discuss additional medication treatments for treating apathy and bring it up at your next medical appointment.
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. It is also acceptable for you to explain how their choices are impacting your life.
While we are reluctant to admit it, sometimes the advice our loved ones need to hear, needs to come from someone other than us as the primary care partner. Consider helping your loved one to plug into a support group. By being around others with optimistic attitudes and a willingness to do the work to live a quality of life with Parkinson’s, they may get the inspiration they need to make better choices for themselves.
If your loved one with PD refuses to exercise, perhaps brainstorm for ways you can move together with fun activities you both enjoy. Or, find a workout partner or friend that might be willing to join your loved one in their exercises, making it as much about social connection and enjoyment as actual movement.
Communicating clearly and compassionately is important. It takes finding a delicate balance between respecting the person living with Parkinson's independence and knowing when to offer help. At the end of the day, they are the captain of their own ship. Other tips include:
Express to them your concerns about their refusal of your help. Would they be able to help themselves in an emergency? Perhaps think of “what if” scenarios.
They need to know that in the end, help is there to make them feel better, not worse.
It’s also ok to express your concerns. You are a partner in this treatment as well. Explain how their choices are impacting your life.
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.
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.