Navigating Relationships with Loved Ones

“I was diagnosed with PD six years ago. Within a year of my diagnosis, my wife became increasingly distant and non-communicative. One day she admitted that she was pulling away because she feared that I would become dependent. She had no intention of nursing me. It wasn’t what she signed up for. Although I’m still very independent, and taking steps to remain that way, our relationship seems to be permanently altered. I’ve just had to get used to it, but it is difficult.” Community Member

Receiving a diagnosis of Parkinson’s disease (PD) or continuing to navigate a long-standing journey with the condition involves making many adjustments. From changes in medical care, to adjustments in daily activities, life with Parkinson’s can be ever-changing.

One major area of change is often personal relationships. The way we interact with those around us, especially loved ones, may completely change, and need to continuously evolve when PD is in the mix.

Navigating these relationships can become incredibly tricky, and there may be bumps along the way. However, with strong, open communication, and an effort toward making quality time for loved ones, navigation may become easier.

Learning to communicate

“PD shifts our partnership from a simple 1-to-1 to a more complex combination of dependency and open communication, balancing PD-related activities with the way life was before PD.” Community Member

Communication is key in creating and maintaining relationships with PD. Even if you and a loved one have practiced healthy communication for years, a diagnosis of PD can prompt the need to relearn how to openly and honestly communicate.

Healthy communication is honest, fair, respectful, and involves a great deal of listening to others that you’re trying to communicate with. When battling PD, some of the most critical conversations may be centered on your needs and your caregiver’s needs.

For example, if you want your loved one to accompany you to your medical appointments, tell them. If you want to be more independent, communicate that as well. If you don’t want PD to define your conversations, let your loved ones know that, and tell them you’ll bring the topic up when you’re ready or need to. Being truthful and realistic about what you want and need from your loved ones or caregivers may help prevent communication difficulties and struggles later on.

Finding time and enjoyable activities together

“I went through a very rough time for about a year and my relationship with my husband changed quite dramatically. He quickly had to become my caregiver…As things improved with me, our relationship started to shift from caregiver to care partner. And that is where we remain. I feel it is a good place. It has helped us to do as many activities that make us feel like a “normal” couple. We have planned trips that I may not be able to do later in life. Parkinson’s has definitely dealt us a full hand, but we have tried our best to work through it.” Community Member and Moderator

Depending on your PD and where you’re at in your journey, it may not be feasible to do all of the activities you once enjoyed. Learning what you are able and unable to do, as well as finding new activities and hobbies you enjoy, can be a lifelong experience.

In some cases, it may be that an activity you and a loved one once enjoyed together is no longer an option. Finding a new activity that is within reason for you, as well as joyous for the both of you, may keep the relationship strong and fun.

Whether it’s something active, like a walk through the park, or something more relaxed like a comedy movie marathon, making an effort to spend quality time with a loved one where you are both interested and engaged may provide an outlet to get away from everything and just connect with each other.

Educate those around you

Some relationships may benefit from a gentle nudge toward researching PD. Some of your loved ones may be confused as to what PD is, and how your life will look moving forward. Those who are unsure about what may come next and what you’re going through or could go through, may choose to pull away or be wary when spending time with you.

In addition to openly communicating your needs, abilities, and wishes, it may be beneficial to point a loved one toward easy to understand information on PD. Online communities like ours often have resources geared toward a variety of audiences, including caretakers and loved ones of those with PD, in addition to basic information on the condition.

Your loved one doesn’t need to do an extensive, time-consuming research project on PD, however, showing them where they can find basic resources and information to answer any PD-related questions may help them better understand what you’re going through.

Of course, there are many ways to navigate personal relationships with PD in addition to the ones suggested above. How do you handle relationships with loved ones? Have these relationships changed since being diagnosed? Let us know if any of these ideas ring true for you, or if there are any other tips or issues to consider when fostering connections with loved ones while battling PD.

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