Embracing the Role of a Care Partner

Sarah’s journey as a care partner began with a stark realization: her husband Shane’s health was declining rapidly. Battling brain cancer and end-stage kidney disease, Shane’s need for support became evident. This realization marked the beginning of Sarah’s transformation into a care partner, a role she embraced with dedication and love.

Sarah and Shane chose home hemodialysis (HHD), and the decision to use a NxStage® system was pivotal. It promised some normalcy during a turbulent time in Shane’s health journey. For Sarah, it was not just about providing medical support; it was about restoring dignity and comfort to her husband’s life. Home dialysis was a bit daunting at first, but the nurses and care team with Fresenius Medical Care played a crucial role in their transition to HHD, offering not just medical expertise but emotional support as well.

Putting in the Work

Managing Shane’s dialysis treatments became the core of Sarah’s daily routine. She balanced medical care, household responsibilities, and emotional support. In the beginning, the thought of managing HHD for Shane overwhelmed Sarah. But the support she received from NxStage’s customer service and tech support teams were a huge relief. Knowing that help was just a phone call away made things a little easier. Together, Sarah and Shane navigated the complexities of this new lifestyle, gradually overcoming each obstacle with resilience and teamwork.

The NxStage system brought an unexpected gift – flexibility. It allowed Shane to continue his career from the comfort of their home. It also allowed them the flexibility to attend important life events, such as their son’s cross-country team picnic, since they could choose which days to do Shane’s treatments.

This semblance of normality was a beacon of hope for them, a reminder that life could still offer moments of joy and fulfillment.

Challenges and Triumphs in Caregiving

Balancing caregiving with self-care and work was hard for Sarah at the start. It was a challenge for her to find time for herself while ensuring she met Shane’s health needs. Now, Sarah and Shane prioritize clear discussions about their schedules, ensuring both their needs are met. This approach has been pivotal in maintaining their emotional well-being and managing the requirements of proper dialysis treatment at home. On some days, Sarah felt overwhelmed by the emotional weight of her responsibilities, but she found strength in reminding herself of the gratitude they both felt for being able to take care of Shane’s dialysis at home. The ability to seamlessly integrate treatment into their home life, even managing to start dinner while Shane was on the machine, transformed their living space into a place of healing.

Amid the day-to-day responsibilities, Sarah faced moments that tested her strength and resolve. The first time she held the needle for dialysis, she had a panic attack. This moment underscored the emotional demands of her new role. But with each challenge came a growing sense of empowerment. The small victories along the way deepened the trust between them, keeping her motivated and turning overwhelming challenges into empowering milestones in their journey.

“You can’t get the help you need if you try to shoulder it all alone,” Sarah advises. Celebrating even the small victories makes the journey easier.

One of their significant triumphs was a successful trip to Seattle, made possible by the flexibility and travel capabilities of their NxStage system. Preparation for the trip began early with their nurse, with meticulous planning and coordination, including drawing insights from fellow patient Vanessa Evans’ packing video on social media. The proactive support from their nurse, assuring them of their readiness for travel, was invaluable. The trip not only allowed them to share new experiences, like trying different foods and exploring the city, but also demonstrated the possibilities that lay ahead for their family to be able to travel.

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Insights and Advice for Future Caregivers

In her journey as a care partner, Sarah learned the critical importance of open communication and the delicate balance of self-care. Her advice to other caregivers is to lean on the dialysis community and their care team for support. Joining an online community and sharing experiences can be incredibly helpful. She emphasizes the necessity of expressing fears and needs openly. “You can’t get the help you need if you try to shoulder it all alone,” Sarah advises. Celebrating even the small victories makes the journey easier.

Sarah experienced many emotions as a care partner – from fear and anxiety to profound gratitude and love. Providing treatment was challenging, but experiencing moments of profound satisfaction and witnessing Shane’s health and spirits improve made all of it worthwhile for Sarah.

Not all patients may experience these benefits.