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Yesterday’s blog outlined the three major areas my wife, as a caregiver, supports my health and well-being. In this blog, I will expand on the first major area, dialysis. Recall, this is preparation for whatever the VA asks of us in support of our application for the Caregiver Program.

Here is a comprehensive listing of the ways my spouse assists me with my peritoneal dialysis routine at home:

Assistance with Treatment Tasks

  • Setting up the Dialysis Machine: Connecting solution bags, setting machine parameters, ensuring proper operation, and troubleshooting minor issues. This is especially critical during illness on my part when I cannot operate the Cycler. (See pic 1 below)
  • Preparing the Treatment Space: Clearing and organizing a clean, pet-free area, arranging furniture for comfort and accessibility, and ensuring adequate lighting
  • Organizing Supplies: Ordering, receiving, unpacking (without breaking sterile seals), and storing dialysis supplies in an organized, accessible manner (See pic 2 below)
  • Maintaining Cleanliness: Cleaning the treatment area, ensuring all surfaces and hands are disinfected, and helping with sterile techniques to minimize infection risk (See pic 3 below)

During Dialysis Sessions

  • Assisting with Exchanges: Helping connect and disconnect tubing, monitoring for leaks, and ensuring all steps are performed in the correct order
  • Monitoring for Complications: Watching for signs of infection (redness, swelling, fever), leaks, or equipment malfunction, and knowing when to seek medical help. Provide catheter area oversight and care.
  • Timekeeping: Keeping track of treatment schedules, ensuring exchanges happen on time, and making sure no treatments are missed

Health and Lifestyle Support

  • Fluid Balance Monitoring: Measuring and recording input and output, tracking weight, and helping adjust fluid intake as directed by our care team.
  • Meal Preparation: Shopping for groceries, preparing kidney-friendly meals, and encouraging adherence to dietary guidelines. Liaise with the team dietitian.
  • Medication Management: Assist in prescriptions, organizing medications, and reminding me to take them as prescribed.
  • Exercise and Activity: Encouraging and assisting with appropriate physical activity as recommended by my dialysis and healthcare team

Logistics and Transportation

  • Errands and Appointments: Driving me to in-center checkups, lab visits, or other medical appointments, and running errands as needed. See “legs” blog Thursday for the need for this.

Emotional and Social Support

  • Providing Encouragement: Offering emotional support, helping me cope with the challenges of dialysis, and maintaining open communication. 48% overall of dialysis patients are depressive. 98.5% of PD patients display depressive symptoms.
  • Part of this support is the care and feeding of our Golden Retriever, who acts as an emotional support dog for me in all regards, not just dialysis. Without the support of my spouse, I could not keep and maintain my support golden.
  • Advocacy: Communicating with our healthcare team, asking questions, and advocating for our needs or preferences.

Emergency Preparedness

  • Recognizing Emergencies: Knowing when to call for medical help (e.g., signs of peritonitis, severe pain, or equipment failure)
  • Backup Planning: Being prepared for power outages or supply shortages, and knowing how to handle unexpected situations. This is especially critical in North Texas due to tornado activity being common.

Summary:
My spouse’s role as my caregiver in peritoneal dialysis is multifaceted, involving hands-on treatment tasks, infection prevention, scheduling, health management, logistical support, and emotional care. Her involvement is crucial not only for the technical aspects of my dialysis but also for maintaining my overall well-being and quality of life. Without her, I could not and would not be able to soldier on.