The Value of Self-Care for Home Dialyzors and Care partners

Would you join me in a little daydream?

Let's step into a fairytale village without the pressures of time, efficiency, and productivity in our current world. This village is surrounded by fertile land, beautiful trees, and a pristine lake that is the primary source of water for the community. Every day, one of the villagers rises with the sun to collect water from the lake. To ease the burden of the task, she hangs two large pots on the end of a pole. She places the pole behind her neck and across her shoulders and carries the water up a path from the lake. You are seated at the top of the hill and watch the villager as she treks back up. One of the pots, say the left one, is full and a little water splashes out of the top. The other pot, the right one, has a crack, with water trickling out of the pot. Despite the availability of other pots, the villager selects and attaches the pot with the crack every morning.

Imagine sitting at the top of the hill and watching this water ritual. Your thoughts might first be drawn to the villager and her attitude in the process. You might then begin to imagine the weight of the pots full of water and appreciate the ingenuity of her pot and pole system. Maybe you spend some time thinking about that crack-bewildered that she continues to choose the cracked one. As your focus expands to the path itself, you might notice that as the villager returns, the left side of her path is rocky. By contrast, the right side is lush, with a beautiful path of flowers that line her trail.

There are many versions of this tale. In some the pot with the crack is ashamed by its failure to hold water. In others, a child asks the villager why they use the pot. In both versions, the villager explains that the crack is not an imperfection-rather, it is perfect for tending to the flowers that grow along the path. In some versions, the villager shares that the beauty along the path improves her daily water ritual.

This morality tale is often used to as a meditation on self-compassion, self-esteem, or embracing imperfection. Embedded within these lessons and the villager's ritual is also a reminder of the value of self-care.

Everything is Connected

The flowers that bloom along the path might not be totally dependent on the water from the crack in the pot (it does rain, after all). But the water does help the plants thrive. Back in our real world, our relationships help us move beyond surviving-towards thriving. Meaningful relationships are good for our health! When we have relationships that are characterized by reciprocity, mutual support, emotional connection, shared meaning, and effective conflict resolution, we are more likely to have better quality of life, be more satisfied with life, have better control of our health, feel less sick, and live longer.¹ A strong network of friends and family can help people on dialysis have better health outcomes and live longer.^{2, 3}

When health challenges sneak into daily habits and activities, the balance of relationships shift and care partners may begin to be overwhelmed with dialysis-related tasks.⁴ In relationships where both parties share responsibilities, care partners might find themselves “carrying all the pots” if activities that were once shared become more one-sided.

Despite the potential burden with the addition of home dialysis tasks, care partners have reported that their role in home dialysis helps them continue to grow and develop resilience (3). Just as with the villager and the flowers, the benefits of the care work are shared. The villager brings water and the plants bring beauty. In home dialysis, where partner tasks vary from meal preparation to cannulation, the work of caring between partners may be unbalanced. But, relationships can still thrive. A care partner may do some or all of the more obvious care tasks-and a person on dialysis can give care by expressing gratitude, pursuing goals, engaging in activities that bring shared joy, and participating in household tasks.

Using Resources and Tools Intentionally

The villager in this tale has two goals. The first is to get water to the community and the second is to tend the flowers. In this case, the villager had tools and resources to make the process easier. We can assume that there are others in her community who demonstrated the efficiency of the pole and pot technique to transport the water. However, with her additional goal of watering the flowers, this villager adapted the tool by using a pot with a crack.

Home hemodialysis and peritoneal dialysis introduce new habits and routines into daily rituals. Exploring ways to adapt to these new activities is an important part of coping with dialysis. This is not something that has to be done alone! The Home Dialysis Central Facebook group is a resource of collective wisdom in finding new ways to manage the medical, personal, social, and financial impacts of home dialysis. Clinic social workers, nurses, dietitians, and nephrologists can partner to explore ways of individualizing the home dialysis experience. The most important experts in adapting daily routines and rituals are the people living with the changes. Working together to problem solve can help relationships continue to grow and develop.⁵

Remembering to Fill Both Pots

In this tale, the villager simultaneously provides for her daily needs while tending to the flowers. Imagine how this tale would be different if the villager chose to fill the pot for the plants and did not get water for herself. Our tale might then be like Shel Silverstein's The Giving Tree-one in which the villager gives to the flowers at the expense of her well-being.

Care partners often hear the reminder “You have to put your oxygen mask on before you can help your person.” This is true during a crisis. However, waiting until an emergency to manage stress is not a successful strategy for thriving as a partner in home dialysis. Rather, each person in the relationship-the person on dialysis and their partner must check-in with themselves daily to make sure both pots are filled. Each person in the relationship is responsible for confirming they have what is needed to nourish their own mind (work, volunteering, hobbies), body (food, sleep, exercise), and spirit (love, beauty, and humor). The person on dialysis who intentionally fills both pots (engages in self-care and stress management activities) is better able to respond when the relationship seems unbalanced. The care partner who intentionally fills both pots is better equipped to manage the potential burnout that can accompany home dialysis.

It is unfair (and unhelpful) to suggest that a self-care and stress management routine will eliminate any distress with home dialysis. Stress is a natural part of life and provides information that enables us to find and maintain balance. Signs that we might be shifting from stress to distress might be irritability, changes in eating or sleeping, and difficulty focusing. These signs are information and a reminder to check that we are filling and using the right pots for the tasks ahead of us. We need to ensure that our pots are being refilled daily so that we can tend to the relationships that bring meaning and connection to our lives.

References

1. Uchino BN, Cacioppo JT, Kiecolt-Glaser JK. The relationship between social support and physiological processes: a review with emphasis on underlying mechanisms and implications for health. Psychol Bull. 1996 May;119(3):488-531. doi: 10.1037/0033-2909.119.3.488 ↩
2. Kimmel PL, Peterson RA, Weihs KL et al. Psychosocial factors, behavioral compliance and survival in urban hemodialysis patients. Kidney International 54(1), 245-254, 1998. https://www.kidney-international.org/article/S0085-2538(15)30637-2/pdf↩
3. Ibrahim N, Sharlene S.L.T., Din N.C. et al. The role of personality and social support in health-related quality of life in chronic kidney disease patients. Public Library Sci 10(7), 1-11, 2015.↩
4. Hoang VL, Green T, Bonner A. Informal caregivers' experiences of caring for people receiving dialysis: A mixed-methods systematic review. J Ren Care. 2018 Jun;44(2):82-95. https://www.ncbi.nlm.nih.gov/pubmed/29357407↩
5. Walsh, F. (2002). A family resilience framework: Innovative practice applications. Fam Relat, 51(2), 130-137. https://doi.org/10.1111/j.1741-3729.2002.00130.x↩