Resilient Care Partnering

Many years into my role as a care partner, I’m admittedly still learning how to navigate and often find myself lost in an unfamiliar wilderness. Every day presents a new set of challenges for my husband Davis with Parkinson’s and for me as the primary care partner. Some are more easily resolved than others. Resilience was an essential part of growing up while living in a home where Mom had multiple sclerosis and was tested almost daily as an endurance athlete. My quest to improve my capacity and performance taught me to adapt to unexpected hiccups, like injury and illness. Getting better is the currency of an elite athlete in her prime but isn’t always an option for someone with a degenerative illness. Now, together, we strive to make every day better, or as my husband says, “to stem the decline.”

I find myself still seeking improvements in my capacity—now as a care partner—and am eager for coaching. As a facilitator in the care partner space, I’ve been fortunate to be in conversation with many social workers and psychologists who have bolstered my ability to manage the ups and downs of living adjacent to—and caring deeply for—someone with Parkinson’s. At a recent care partner meetup, we had a special guest who taught us some new skills. Kathleen Crist, the executive director of the Houston Area Parkinson Society, is a licensed social worker who has served the Parkinson’s community for 22 years. We asked her to join us and share some of what she has learned, and specifically to help guide care partners, specifically those struggling to communicate their own needs effectively to their person with Parkinson’s. Some of what we learned may be applicable to others in the caregiving space. Ms. Crist's personal experience as the primary caregiver for her grandmother who had Alzheimer’s disease has also informed her work and lessons learned, which I hope will ease your journey.

Cultivate responsible independence

Ms. Crist’s first tip was for caregivers to encourage responsible independence of the individual who has Parkinson's. She said, “We can try to level the playing field a little bit and practice inclusion, which is to make space for the individual with Parkinson's to participate in as much as they can, for as long as they can.” I see this as "enabling" rather than "disabling" the person you are caring for. It’s an important distinction. It not only gives the care partner more space by sharing duties around the home but also creates a team atmosphere in which to thrive.

Identify and manage loss

Ms. Crist acknowledges that people with Parkinson’s are experiencing loss every day. “They're experiencing loss of ability. They're experiencing loss of identity. They're experiencing loss of contribution. In addition to all the physical changes that they're noting, there may be cognitive and intellectual and personality changes too. We must be careful as caregivers not to just take over all the decision-making which we sometimes want to do out of a true, genuine place of love, care, and concern.” Allowing the person with Parkinson’s to contribute to the decision-making of daily life can help you manage loss by sharing responsibility. This can get harder when the person has cognitive challenges, which happens for many but not all people with Parkinson’s. Ms. Crist reminds us, “Loss is real for the care partner as well.” And sometimes simply acknowledging loss is the first step toward acceptance of a reality that is constantly changing.

Sustainable care partnering requires endurance.

Connie Carpenter Phinney

Adjust and adapt to a new routine

We dove into a question about respite care. One of our listeners was desperately seeking outside help but the person she cared for was resistant. Ms. Crist asks care partners to openly discuss why they need help—and to be specific—when informing their person which can help them better understand their need for time away. Seeking outside care might begin with baby steps; asking a friend or relative to come in for an hour or so. If you can, especially in cases like Parkinson’s where the road is long, start early in the process even before you really need outside help. If you wait until the situation is more dire, it will become more difficult to not only find help, but to accept it.

As a former elite endurance athlete, I look at this as training. In this case, we are training ourselves to let go and training the individual you look after to accept outside care. There’s a coaching axiom that says it takes two weeks to adjust, and two months to adapt. Adjustment means you no longer feel stiff and sore from the training, while adaptation means your body has fully acclimatized to it. As an athlete, adaptation meant reaching a new level of fitness. For the care partner, this might mean you have created a more sustainable environment in which both you and the person you look after can thrive.

Set boundaries

Ms. Crist also encouraged care partners to practice setting boundaries. Boundaries help you to step back but also allow you—the care partner—to maintain your own identity. The person you are caring for may also need to set boundaries, especially in the case of long-term chronic illness. Just as we don’t always want to be labeled with the care partner role, they also want to avoid feeling like a patient because it leads to more loss of self. Setting boundaries might need to be elastic, as conditions change, but they can be helpful in making your role as a care partner sustainable.

Recruit the bad guy

Lastly, she said sometimes you must recruit help to deliver hard news. “Let someone else be the bad guy,” she said. Ms. Crist has helped facilitate this with her constituents as part of her work directing the Houston Area Parkinson’s Society. Recruiting a third party can be a key to getting what you need during tough times especially when navigating topics too inflammatory for you—the care partner—to grapple with alone. This can be especially helpful if you are the adult child, and you are suddenly making decisions for your parent. And it can certainly be the case with couples as the decision-making dynamic swings under duress caused by disease. Letting someone else be “the bad guy” can provide more ease in the care partner relationship but might also help you realize the objective of getting needed help and/or time away. Find someone you both respect—a friend, colleague, or clergy—who has the expertise to help you more easily navigate the conversation. This is especially helpful when the care partner needs respite and the person being cared for is resistant.

Seeking change is the first step toward achieving it and many of these tips may help provide framework for a more sustainable relationship. None of it is easy, but all of it is possible with planning, support, and the most limited of all commodities, time.