November is National Family Caregivers Month, and in honor of this, November’s panel discussion focused on the importance of care partners, support systems, and Parkinson’s care teams. Panelists shared personal stories of how they’ve found strength and support from their families, friends, and communities as they navigate life with Parkinson’s.
BUILDING AND MAINTAINING SUPPORT NETWORKS
A supportive network or community is essential for living well with Parkinson’s. What this looks like will be different for everyone. For some people with Parkinson’s (including several panelists), a live-in care partner is central, while for others this community/network primarily involves friends, neighbors, and extended family.
The key is to build diverse support networks, both within the Parkinson’s community and in your personal relationships. The panelists emphasized the need to create bonds with several people and groups, which can help keep any one person from feeling burdened.
Finding support through the Parkinson’s community in particular can be life changing, several panelists said. Larry shared how he would struggle to navigate life with Parkinson’s without the Parkinson’s community. “We get what others are going through,” he said. “There’s a bond that we have. The strength of the Parkinson’s community cannot be underestimated.” Karen, too, spoke about the benefits of having a Parkinson’s network. “I have such a sense of trust in the Parkinson’s community,” she said. “I know we’re going to march forward together.”
There are numerous Parkinson’s communities and support groups that you can get involved with. Davis Phinney Foundation Ambassadors can help you find a local group and/or connect with people in the Parkinson’s community far and wide. Reach out, early and often.
CARE PARTNER DYNAMICS
The panelists addressed the benefits and challenges of relationships with care partners, especially when your care partner is your spouse or life partner. The panelists emphasized that open and honest communication, mutual understanding, and compassion are essential for navigating Parkinson’s as a team.
When it comes to communicating with a care partner, Kat reminded listeners that timing is important. She recommends people set aside “neutral time,” when you and your care partner can calmly talk about how you’re both feeling and any changes you or they may be noticing. “Try to avoid these conversations in the heat of the moment,” she said.
A few panelists with live-in care partners shared that balancing independence with support can be challenging. While it’s important to ask for help when you need it, you also don’t want to feel like a burden to your partner or make life all about you all the time. To help with these challenges, the panelists recommended the following:
- Inform your partner that you’ll ask for help when you need it. This helps you maintain your autonomy and lets your loved one know that they don’t need to be constantly asking you if you need help.
- Be intentional about supporting your partner and their dreams. Remind your partner that their wishes and goals are worthy and should be pursued, and work together to determine ways they can achieve their goals.
- Giving your partner and yourself permission to be present for each other.
- Learn how to talk about “the hard stuff,” and learn how to be a good listener.
- Remember that time impacts relationships, with or without Parkinson’s. Don’t use Parkinson’s as an excuse for relationship problems.
- Make active choices to build and maintain the support of people other than your care partner.
- Recognize that no matter how supportive your care partner may be, you will experience symptoms they can’t help you manage. It’s important to take ownership and action to manage your symptoms.
- Rely on counselors, friends, and resources to help bolster you.
- Encourage your loved ones to build their own care teams and get the support they need.
NETWORKS OF FAMILY AND FRIENDS
A wide network of friends and family can support you tremendously when you’re living with Parkinson’s. However, it is important to remember that not everyone in your social circle may understand the complexities of Parkinson’s, and some people close to you may need time to process (and even grieve) your diagnosis.
Just as it is with a care partner, communication is key to navigating these relationships. Tailoring the communication to the dynamics of each relationship (such as with children, friends, or partners) can help build deeper connections and shared understanding.
Know, too, that relationships will change over time, and different people will respond in different ways to news about a Parkinson’s diagnosis or changing symptoms. If you are experiencing challenges in your relationships due to Parkinson’s, consider this advice from the panelists:
- Give your family and friends time to process. Allow them a period of grieving, just like you allowed yourself this time to grieve.
- Know that some people will not want to talk about Parkinson’s, or even acknowledge it. To maintain a relationship with them, you need to accept this reality.
- If someone close to you is reluctant to talk about your Parkinson’s but you feel the need to tell them about it, approach that conversation gently. Open the dialogue with a statement like, “I notice that you don’t want to talk about my Parkinson’s. I’m feeling like there’s a big part of my life that I can’t share with you. I miss connecting with you.” Use “I feel” language. It’s okay to have a need as a parent and to address this with an adult child.
SELF COMPASSION
No matter what your support network looks like, treating yourself with grace and compassion is critical to living well with Parkinson’s. Whether it’s overcoming apathy, navigating changing relationships, or coping with anxiety, the panelists emphasized the need to be patient with yourself, celebrate small victories, and recognize that personal growth takes time.
ADDITIONAL RESOURCES
Davis Phinney Foundation Ambassadors
In Your Area: Parkinson’s Groups
Independent Parkinson’s Network: Members
How to Communicate What Parkinson’s Is to Friends and Family
How to Share Your Parkinson’s Diagnosis with Family, Friends, and Co-workers
WANT MORE PRACTICAL ARTICLES LIKE THIS?
You can learn much more about living well with Parkinson’s today through our Every Victory Counts® suite of resources. Each manual is packed with up-to-date information about everything Parkinson’s. Click the link below to reserve your manual(s).
Thank you to our 2024 Gold Partner, AbbVie, and our Silver Partner, Mitsubishi Tanabe Pharma America, for their ongoing support of these must-have manuals. Additionally, we’d like to thank Barbara and Dale Ankenman, Abby and Ken Dawkins, Bonnie Gibbons, Irwin Narter, Lorraine and J Wilson, and Gail Gitin in loving memory of Gene Gitin for their generous donations that allow us to make these resources available and accessible to all.
