Navigating Relationships with Loved Ones

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.”

-ParkinsonsDisease.net Community Member

Receiving a diagnosis of Parkinson’s disease 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.”

-ParkinsonsDisease.net 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.”

-ParkinsonsDisease.net 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.

Comments

View Comments (3)
  • lovetobake
    7 months ago

    I am exasperated! I want to stay independent, but I would also like to know my husband would be willing to help me if I needed it. How can I ask for help without sounding like I’m feeling sorry for myself? He is a great guy but often doesn’t seem to notice when I need assistance. This probably sounds like a stupid question, but I don’t know how to tell him to pay closer attention to my needs without sounding like I’m complaining. I am definitely feeling the progression of the disease and I need him sometimes to come help me right away especially when my toes curl and cramp up and I’m holding on for my life to avoid falling. He tends to chastise me if I’m baking or doing something that exhausts me when all I need is a little help cleaning up or whatever. I am trying to hold on to everything I used to do just to feel normal. I’m 9 years into the disease and am still trying to figure it out.

  • KellyW moderator
    7 months ago

    Hi Lovetobake! Thank you for sharing your question with us. I have had PD for 16 years. I met my husband after I was diagnosed so he knew a little bit of what he was getting in to. We found, as the years passed, that I didn’t talk to him very much about my day to day symptoms. I didn’t want our relationship to be all about Parkinson’s. We started attending a support group and I felt so comfortable being around people who understood the ins and outs of PD that I just let it all hang out. After the group, my husband said “I had no idea that you had so much going on”. Since then, I’ve learned that I need to share more and to ask him for help when I need it. We have some standing instructions like “if I’m ever stumbling with my words, just say the word for me and we can move on” or “if I am struggling with money at a store, just take it from me and pay the person” just so I don’t feel foolish. Those are our small set of rules, but they helped to open the dialogue and ask for future help with things so it comes more automatically to him.
    So, I guess my thoughts are, try to get him to attend a support group with you, He might also have an opportunity to meet other care partners and learn how they deal with issues. And, try to set a few “rules” just so he knows that if you are struggling, he can and should help you with whatever you are trying to do.
    I hope this helps!
    Kelly, ParkinsonsDisease.net Team Member

  • angela.robb moderator
    7 months ago

    Hello lovetobake – First, welcome to the ParkinsonsDisease.net community. I’m so glad you found this resource for yourself! There are many compassionate folks, who live with Parkinson’s each day, who are sharing their experiences and knowledge with the community here.

    I’m a wife and a carepartner for my husband, so my comments come from this perspective. Karl and I find that living with Parkinson’s does require a team effort. We work together to help each other cope with the ups and downs of Parkinson’s. We also try hard to communicate with each other about what each one of us needs. Although we’ve been together for over 20 years, we still have times where we both forget to ask for help or anticipate the other’s needs. We work hard to ask and give help to each other and be aware of each other’s feelings. I try to be helpful but I also want to make sure I don’t overstep and take his independence away.

    We make time to have conversations about each other’s needs. I can say this is hard sometimes when we are wrapped up in the goings on of daily life! But, it is very important to have these conversations and I try to have them not a the exact moment he needs help but to reflect on it later. Sometimes, I found having them at the exact moment there is a need can cause undo stress on both of us.

    Having an open and honest discussions about both of your needs may be the best place to start. No matter how many years anyone lives with Parkinson’s, we are all still trying to figure things out :). Parkinson’s really is a condition where there’s always something new to cope with, from all perspectives.

    -Angela, wife and PD carepartner, ParkinsonsDisease.net community team member & advocate

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