18
+ Organize and cover in-home support, if needed. This could look like engaging another person to check on your loved one and their primary care partner, prep meals, organize and give medications, or do light housecleaning.
+ Research and arrange local services, such as physical or speech therapy, community exercise or meal delivery. If possible, work with a care coordinator who can serve as additional eyes and ears on the ground.
+ Support the primary care partner in their own self-care. Don’ t just ask if they’ re caring for themselves; help make it happen, in whatever way they say helps.
+ Use technology to stay connected. Consider setting up a regular video call( for example, every week or every month) to check in. need to ask directly for their support. Asking directly might feel like one more thing on an already long to-do list, but asking gets you and your loved one the support you most need. Turn to Pillar 2: Ask for What You Need to learn more.
Social, Cultural and Other Factors
A person’ s gender identity, racial or ethnic background, sexual orientation and socioeconomic status also can affect the care partner experience.
Across all diseases, men are less likely than women to be care partners, and male care partners may be less likely to seek support. Those who are part of an underrepresented or marginalized group— members of the LGBTQ + community and people with diverse sexual orientations and gender identities— can face unique challenges that aren’ t met through current support structures. These individuals may see fewer, if any, care partners like themselves and be less inclined to reach out for support or assistance. This can exacerbate loneliness and isolation, and lead to burnout. For more, turn to Burnout Is Real— and Preventable.
Kate Harmon( top left) stayed connected with her family through video calls.
Time Since Diagnosis
Many care partners and their loved ones say they feel very supported when first opening up about a Parkinson’ s diagnosis. Eventually, though, that support often fades and isn’ t there when it’ s really needed. No matter the time or distance, showing up consistently is key.
As a care partner, you may need to manage these relationships to keep them from fading into the background— or to bring them back. If you feel like people have disappeared, tell them how much their support means and how they can help. It can be beneficial to remember the reasons why people might step back: They may be busy with their own lives, unsure what to say or do to help or grappling with their own feelings about illness and mortality. In other words, it’ s not personal— but you still may
As part of the LGBTQ + community, we’ ve always needed a medical team that respects us as partners. At every new appointment, Steph still wonders,“ Will this nurse or doctor be biased? Does she say‘ wife’ or‘ partner’?” That mental energy takes away from what we need to focus on. Thankfully, her current team treats us as we are.
Melissa Clague
Table of Contents