Notes from the Care Partner Meetup: December 2024

As usual we started our live call with a breathing practice. As a former elite endurance athlete, I have long known the power of the breath, and I invite you to work on taking “breath breaks” to help in regulating your emotions and help you find equilibrium during stressful times.  

Box breathing is something that the Navy Seals use—so why not us? It’s a simple self-care technique that involves inhaling for four counts, holding your breath for four counts, letting it out slowly for four counts, and holding it again at the bottom of your breath. Do this several times in succession to regain a sense of calm when you feel anxious and overly stressed. It is simple, and it helps!  

BALANCe, RENEGOTIATION, and when it’s about the care partner

After the breathing exercise, Pat started off our conversation by sharing his experience downsizing in his job as a middle school teacher because his wife, Cydney, needs him to be more present. Anxiety is a big part of Parkinson’s for many people, and Cydney does better when they are closer together, so Pat is currently trying to create a work environment where his wife won’t be left home alone.  

Kathleen commented that finding a balance is often challenging as you figure out your own needs as a care partner while managing the needs of the person you’re caring for. This is especially important if you love what you do and don’t want to fully give it up.  

Pat said, “I see light in the opportunities,” and while he plans to quasi-retire, he isn’t ready to stop working altogether. This is where he is working to find the balance. Cydney was 47 when she was diagnosed, and she retired quickly from her work. Because of this, they missed out on some of the potential for earnings which is something people in the young onset Parkinson’s world understand. 

Pat also talked about how his wife had knee surgery recently. While recovering, she took a little spin on her recumbent bike in their cul-de-sac. He said his neighbors came out to applaud her efforts which made her throw her arms up in victory. We discussed how important small victories are and how bringing the neighbors in helps to build community and more understanding. Pat was happy for this victory, but he also said, somewhat jokingly, “It’s not about me.” 

This prompted a question for Kathleen: “When is it about the care partner?” Her answer was swift and to the point: At the point of diagnosis.  

Kathleen explained how care partners can’t help but be affected when someone they love is diagnosed with a chronic illness. In fact, the impacts probably start even before diagnosis, when the care partner realizes something is not right. Often, this is why couples first go to a doctor and seek a diagnosis. 

So it is about us–the care partners–and it’s important to acknowledge that. Pat says he has built a lot of community and partnerships throughout the years with Parkinson’s and how that helps him and Cydney be stronger as a unit. 

EVERYTHING CHANGES AND COMMUNITY HELPS

We also discussed how everything changes with diagnosis. Since some of our audience are newly diagnosed, our first advice to you is to start acknowledging how it affects you. Then, our next advice is that you build a community to support you and your person with Parkinson’s.  

Pat says he loves a good roller coaster ride and they are making the best of it, even having fun and certainly they have built a huge community where they live in Las Vegas and beyond. 

There’s a metaphorical story about a couple who are bound for an idyllic island beach vacation, but when they exit the plane, they are in Holland. It’s cold and wet and windy. What do they do? They acknowledge it wasn’t the destination they chose, but they immediately pivot and make the best of it. After a few days, they learned to embrace the culture, character, history and people in Holland. Their outlook changed; they changed. This is the story for most of us after diagnosis, but it’s important not to forget the difficult transition. 

Kathleen said, “I think most of us are kind of hardwired to want to feel like we’re planning or to feel like we’re prepared.” Kathleen also referenced Hardwiring Happiness by Rick Hanson. In this book, Rick Hanson says that if we were walking in the jungle and heard leaves rustling, we would assume the noise was not butterflies, but jaguars. This is our most primal defensive response to a threat, and it’s how we as a species are programmed. It helps to balance our energy and find a balance where we are not scared, but prepared. 

HAPPY TIMES, PERFECTION, AND REDUCING STRESS 

Gail talked about our capacity to recreate the happy times, especially around the holidays and how we must learn to let some of that go as we age, and as we care for someone now in our more unpredictable lives. She said, “I wonder why we, as caregivers, do not realize how much work and stress were added to our lives in trying to make things like they were when everything was easier.” 

Kathleen responded, “I’ve yet to meet someone who’s actually perfect. There are some people who probably grade themselves on the on the high end of things. Close to–but not–quite perfect. And it’s a huge amount of pressure.” Kathleen also acknowledged our desire and nostalgia to recreate happier, healthier times. It’s important to keep reaching for a brighter future, even when it’s hard, but don’t expect perfection. 

Kathleen continued, “I think many of us who identify as caregivers or care partners also just have this idea that we that we can accomplish anything we set our minds to, and sometimes that’s taking too big of a bite.”  

Gail said, “Maybe we need to sit down with each ourselves and say, ‘Okay, I understand what we are trying to accomplish. Let’s see if we can pare it down. If we don’t reduce our stress, we prematurely age.’ So, please, let it go.” 

How can you reduce your own stress? Take a breathing and exercise break. Then, after you’ve done that, contemplate what your choices are, and maybe even make a list of those choices. And work toward minimizing the load. Don’t be afraid to say no or ask for help. 

QUESTIONS FROM THE AUDIENCE 

“Any suggestions for how to maintain joy when your loved one is overwhelmed with apathy and depression? I’m finding it difficult to be as attentive and supportive as I want to be while also not feeling swallowed by his darkness.” 

Kathleen said, “That’s a very difficult thing, because a lot of times it’s very easy to feed off the mood and the energy and the tone of people around us. You can do your best to try to help people with their depression or their anxiety or their apathy by acknowledging their feelings. And try not to internalize that in a way that that contributes to a darker mood or darker place for yourself.”

Kathleen added, “I think then you must really assess what brings you joy, and then figure out what are the daily bites of things you can do for yourself. Journaling helps with this. Stepping back and just taking a minute for yourself will help.”

We also have to acknowledge that change is often uncomfortable, so we must adjust our expectations. Sometimes even that can help bring your level of stress down. Let go of things that don’t really matter. 

Gail added, “One of the problems with being a caregiver is you don’t allow yourself the extra time to maintain your social circle. You give yourself a pass not to connect.” But Gail also thinks that these are the relationships we need most. They give us an escape and a reminder of who we are outside of caregiving. Schedule time for friends, put it on your calendar and get used to finding someone to sit with your person if they need continual attention. 

Also, I recommend you take time to journal. Write a few things down. Breathe some nice steady breaths. Doodle. Breathe again. Make lists and review them periodically, but also just keep going. Keep giving yourself those breaks, the little bits of time to yourself, while also committing to not being too isolated. Make dates with your friends. It’s hard, but you can do it. 

“What strategies have been helpful to get, to know your person better with the changes they are going through while honoring them, and your grief, at the same time?” 

Our advice was to start with listening.  

Kathleen said, “Communication is going to be key. And acknowledging what you feel and they feel is also important. It’s okay to agree that it really sucks.” Kathleen also said she asks students and interns she works with to spend time with people with Parkinson’s. Afterward, she asks them to describe how they feel. What does Parkinson’s feel like for your person? How about for others?

When we ask, we learn, and it creates more compassion. Those conversations help to level the playing field. It’s also okay as the care partner to express not only your commitment, but also your fear or sadness.  

“My husband is 70 years old and was diagnosed 5 and a half years ago, and she said, she’s feeling a lot of grief and anger as he becomes more helpless and dependent. How do I deal with this and maybe find a counselor who understands?” 

Gail said, “Support groups are wonderful. We recommend online support groups if you don’t live near one or are not able to attend in person.” 

Kathleen added, “Resentment and grief are such complex, complicated emotions, and they’re signals that our bodies are giving us to figure out ways to respond versus react. Sharing some of that grief with someone helps. Therapists are incredibly helpful, and although many don’t understand Parkinson’s, they can help with your feelings of grief and loss. But you also are experiencing a loss of identity, and your brain is painting a picture of your future that scares you.” 

It helps to get some guidance in sorting out ways to help empower your person to be able to do more so you can make space for yourself. This might help both of you feel less helpless. 

Kathleen volunteers anyone living in Texas to contact the Houston Area Parkinson’s Association for help. She recommends online telehealth if you can’t leave the house to make an appointment. 

Keep building your community and your community changes. When you are diagnosed, don’t be afraid to meet other people with Parkinson’s and their care partners, because we learn so much from each other. There are so many brave people out there navigating this with relative ease.  

Please remember, though, it’s not easy for anyone, even if some make it look a little easier than others. Still, you can mine their wisdom, and maybe even be a support person for them, because those that are even navigating more easily still need support, just like you do.  

Kathleen added, “Don’t underestimate the power of a friend who knows nothing about Parkinson’s because you might welcome the change and talk about anything but the disease.” 

Both Gail and Kathleen suggest taking classes especially those the help you let your mind go. Do art, join a book club, take up knitting, or woodworking. Learn a new language. Or get out and exercise. Do something for yourself. 

“What if your person with Parkinson’s isn’t following doctor’s orders or refuses to go to Physical Therapy?” 

Seek medical advice. Most medical practices have an online portal for direct communication with clinic staff, be proactive and let them know what you are experiencing.  

Personality changes can be medication based, so take notes and try to understand what is happening in the home so you can make an accurate report to the clinic. Most medical professionals working with people with Parkinson’s know they can help, let them try.  

“Is there ever a time for a caregiver to give up?” 

Kathleen answered, “Yes.” And she did so quickly. 

She went on to say, “The amount of sweat equity that you put into being a care partner, the amount of intellectual equity, the amount of emotional equity that you’re putting into things is huge. But I will say that there have been plenty of times in my professional life where I have encouraged care partners to walk away because they’re doing more harm than good to the individual with Parkinson’s. If there is damage being done—for the care partner or the person with Parkinson’s—you might have to walk away. It’s okay to acknowledge you can’t do this.” Kathleen also noted that this decision doesn’t have to be made forever. 

What can you do to prevent this type of crisis? In our experience, the number one thing you can do is to connect with your team and, as always, keep building it. Especially after diagnosis, this might mean people in the Parkinson’s space. Often these are the people who will understand your situation and help you through difficult times. Your old friends may not be able to understand your current situation.  

WE ARE HERE FOR YOU 

This was a hard note to end on, but it was important, too. It takes courage and bravery to explore these questions.

As always, we like to remind you, our listeners and readers, to check out the list of Davis Phinney Foundation Ambassadors. They are reachable, approachable, and highly motivated to help you. 

Gail, an Ambassador herself, closed our meeting by saying, “You’ll remember all the bad things—all the screw ups—but take some time to hold your person’s hand, so that is one of the memories you’ll be able to add: your appreciation of that person.” Sit down, hold their hand, and don’t beat yourself up.  

Keep going and thanks for reading.