Caregiving in the later stages of CKD
Caring for someone in the later stages of CKD has its own unique challenges. As the disease progresses, caregiving often involves more complex care routines, more coordination with the care team, and thoughtful planning to support comfort and daily living.
- Medically reviewed by
- AKF's Medical Advisory Committee
- Last updated
- December 22, 2025
What makes later-stage care different?
As kidney function significantly declines, patients and care partners (or care givers) often face decisions about dialysis, transplants or end-of-life care. This stage requires an even deeper level of organization, advocacy, and self-care.
When the eGFR falls between 15 and 29 (stage 4) or the kidneys fail completely (stage 5), the body cannot effectively filter waste or manage fluids. Your loved one will experience more intense symptoms. Symptoms can change quickly in later stages. Knowing what to look for helps catch problems early. Learn more about caregiving during the earlier stages of CKD.
Pay attention to:
- Swelling (edema) in the legs, feet, hands, or face
- Very little or no urine
- Shortness of breath
- Sudden tiredness or confusion
- Nausea, vomiting, or loss of appetite
- Pruritus (itchy skin)
- Muscle cramps or weakness
Write down when symptoms start, what makes them worse, and if they improve. Share this information with the care team so they can adjust treatment if needed.
What should I know about dialysis and transplant planning?
Later stages of CKD require making critical decisions about dialysis (a treatment to clean your blood when your kidneys are not able to) and kidney transplant. Care partners are essential in helping their loved one explore treatment options.
Dialysis preparation
Dialysis can be done in a center or at home. Ask the care team which type fits your loved one's health and daily routine.
- You may help track daily weight, swelling, appetite, and energy levels so the care team can adjust treatment.
- For home dialysis, care partners often help with training, keeping a clean area for supplies, and building a routine.
- For in-center dialysis, care partners can help with transportation and planning rest time afterward.
Learn more: Home dialysis: Care partner essentials
Transplant preparation
- Getting a kidney transplant requires a full evaluation to check health, medicines, and support needs. Care partners often help gather records, schedule tests, and manage appointments.
- Talk with the care team about waitlist steps, living donor options, and what recovery will involve, including strict medicine schedules and infection monitoring.
- Caregivers often help with the donor search by gathering information, reaching out to potential donors, and supporting their loved one through the testing and evaluation process.
How does the kidney-friendly meal plan change?
Your loved one’s nephrologist and registered dietitian nutritionist may have recommendations for a kidney-friendly eating plan in later stages to manage symptoms and slow CKD progression. Your role in meal planning, label reading, and tracking intake becomes more essential than ever. Your loved one may need to limit salt, phosphorus, and potassium. Some people also need to limit how much they drink each day to prevent fluid overload. Ask a dietitian for clear examples of foods to choose and foods to avoid. You can learn more about healthy eating for their stage of kidney disease and find kidney-friendly recipes on Kidney Kitchen®.
How should I handle difficult conversations?
Caring for someone with kidney disease often means facing emotional decisions together. These conversations can feel uncomfortable, but they help prevent confusion and keep everyone on the same page.
When it's time for these talks, choose a calm, private space. This gives everyone room to speak openly without distractions.
As you begin, try to:
- Clarify your loved one's wishes in simple, direct language
- Ask what matters most to them and what worries them about the future
- Listen for what brings them comfort and what feels overwhelming
- Share concerns honestly while staying supportive
If your loved one's health declines, it may be time to talk about:
- Conservative management: care focused on comfort and slowing symptoms without dialysis
- Palliative care: support for pain, stress, and symptom relief at any stage
- Hospice care: extra support when life expectancy is limited, centered on comfort and dignity
Discussing these options early helps make sure care decisions match your loved one's values and goals.
How can I support their emotional well-being?
Living with advanced CKD can be frustrating and tiring. Your loved one may feel discouraged, scared, or withdrawn at times.
You can support them by:
- Listening without judgment
- Helping them stay connected with friends and family
- Encouraging light activity if the doctor approves
- Making space for breaks, hobbies, or rest
If they show signs of depression or anxiety, talk to the care team about mental health support.
How can I care for myself?
Later stages often bring more stress for care partners. Protecting your health allows you to provide the best care for your loved one. Schedule your own medical appointments, social or quiet time to avoid burnout.
- Seek counseling: It is completely normal to feel grief, sadness or anxiety. Speaking with a therapist or joining a support group for dialysis care partners can provide a safe outlet.
- Set boundaries: Communicate with the care team and other family members about what tasks you can and cannot take on. Understand that you cannot do everything, and that is okay.
Your well-being directly impacts the quality of care you provide. Don't forget to prioritize your own rest and emotional support.