If your loved one has been diagnosed with End Stage , it’s natural to feel overwhelmed and unsure about what to expect during the disease. As an experienced hospice nurse with years of experience, I am here to you through this journey with and empathy. In this article, we will cover what end-stage is, the changes you may observe in your loved one, and how to provide the best care from onset until the end of life.

What is End Stage Renal Failure?

End Stage Renal Failure, also known as End Stage Renal Disease (ESRD), occurs when the kidneys lose their ability to function properly. At this stage, the kidneys can no longer adequately filter waste and excess blood fluids. As a result, harmful toxins build up in the body, leading to various symptoms and complications.

Understanding the Journey of ESRD

  • Early Stages: During the early stages of ESRD, your loved one may not experience significant symptoms, and the disease progression can be slow. Medical management and lifestyle changes can help slow down the progression at this point.
  • Mid-Stages: As the condition advances, your loved one may start experiencing noticeable symptoms and complications. They might require dialysis or other medical interventions to manage their health.
  • End Stage: At this stage, the kidneys’ function is severely limited, and the patient’s quality of life might be significantly affected. The focus of care shifts to providing comfort and symptom management. This typically involves .

Changes in Your Loved One’s Health and What to Expect

As End Stage Renal Failure progresses, you may notice several changes in your loved one’s health and overall well-being. It’s important to remember that each person’s experience may differ, but some common symptoms and changes include:

  1. Fatigue and Weakness: Your loved one may feel more tired and weak than usual, as the kidneys’ inability to filter waste can cause a buildup of toxins in the body. These toxins make your loved one feel sick and tired. The kidneys produce a hormone that stimulates the body to make more red blood cells, which carry oxygen to the body. Your loved one may have fewer red blood cells over time, increasing weakness, tiredness, fatigue, and shortness of breath.
  2. Fluid Retention: The kidneys’ inability to eliminate excess fluids can lead to swelling in the hands, feet, and ankles. It can also raise the blood pressure of your loved one and make their heart work harder.
  3. Changes in Urination: Your loved one may experience changes in urine output, such as decreased or increased frequency, darker urine, or foamy urine. The change in urine appearance can signify more waste products or proteins.
  4. Loss of Appetite and Nausea: The buildup of waste products can cause a loss of appetite and frequent nausea. This can cause your loved one to lose weight, and the weight of the fluid buildup may mask this weight gain.
  5. Itching: The accumulation of toxins in the bloodstream may lead to skin itching. The kidneys also help keep skin healthy and smooth. The buildup of toxins and poorly functioning kidneys can make the skin dry and irritated. The itching can lead to skin scratching and cause sores or .
  6. Sleep Problems: Your loved one may have difficulty sleeping due to fluid buildup, itching, or . They may also have restless legs syndrome, which causes them to feel like moving their legs while trying to sleep. This can make them feel tired and sleepy during the day.
  7. Mental Confusion: As the disease progresses, some patients may experience mental confusion or difficulty concentrating. The kidneys also help keep the brain and nerves working well. When the kidneys are not working well, they cannot remove the waste products that affect the brain and nerves. This can make your loved one feel confused or forgetful. They may also have trouble paying attention or solving problems. This can affect their daily activities and relationships with others.

Caring for Your Loved One: From Onset to End of Life

Caring for a loved one with End Stage Renal Failure can be emotionally and physically challenging, but there are ways to ensure their comfort and well-being throughout the journey. Here are some essential tips for providing the best care:

  1. Stay Informed: End-stage renal failure is a severe condition that affects your loved one’s kidneys and other parts of their body. You can help your loved one by learning more about their condition and how to care for them. You can ask doctors, nurses, and other healthcare workers for information and advice. They can teach you what to do and what to expect.
  2. Medication Management: Your loved one may need different medicines to help their kidneys and other organs. Some medicines may help lower blood pressure, control blood sugar, or prevent . Some medicines may help reduce their pain, itching, or nausea. You can help your loved one by ensuring they take their medicines on time and as directed by their doctor. You can also keep track of their medicines and check for any .
  3. Dietary Considerations: Your loved one’s diet is crucial for kidney health and well-being. They may need to eat less of some foods and more of others. For example, they may need to limit their salt, potassium, phosphorus, and protein intake. These are substances that can build up in their blood and cause problems. They may also need to eat more foods rich in calories, , and minerals. These are substances that can give them energy and nourishment. You can help your loved one by working with a dietitian who can make a special diet plan for them. You can also help them prepare and enjoy their meals.
  4. Fluid Control: Your loved one’s fluid intake is also very important for their kidney health and overall well-being. They may need to drink less or more fluids depending on their condition. For example, they may need to limit their fluid intake if they have swelling or high blood pressure. They may need to increase their fluid intake if they have or low blood pressure. You can help your loved one by monitoring their fluid intake and output. You can also help them measure and record their weight and blood pressure regularly.
  5. Mobility and Comfort: Your loved one may have trouble moving around and feeling comfortable because of their condition. They may feel weak, tired, or sore. They may also have swelling, cramps, or numbness in their legs or feet. You can help your loved one by assisting them in walking, sitting, or lying down safely and comfortably. You can also help them use devices like a cane, a walker, or a wheelchair if needed. You can also help them with personal care, such as bathing, dressing, or grooming.
  6. Psychosocial Support: Your loved one may have emotional and social challenges because of their condition. They may feel sad, angry, scared, or lonely. They may also have trouble coping with their situation or expressing their feelings. You can help your loved one by offering emotional support and understanding throughout their journey. You can be a good listener and encourage open communication. You can also help them stay connected with their family, friends, and community.
  7. Pain and Symptom Management: Your loved one may experience pain or other symptoms because of their condition. They may have headaches, backaches, or stomachaches. They may also have nausea, vomiting, diarrhea, or . You can help your loved one by working closely with the healthcare team to manage their pain or symptoms. You can also help them follow their treatment plan and correctly use their medicines or therapies. You can also help them use non-medical methods to relieve their pain or symptoms, such as massage, music, or meditation.
  8. Quality of Life: Your loved one’s quality of life is essential for their happiness and dignity. Their medical care may not meet their physical, mental, or spiritual needs. They may also have personal goals or preferences that are not respected by their healthcare team. You can help your loved one by maintaining their quality of life and ensuring they engage in activities they enjoy, even if they have limitations. You can also help them make decisions about their care that reflect their values and wishes.
  9. Hospice Considerations: Hospice is a type of care that focuses on maximizing quality of life through truly patient-centered care to provide comfort throughout whatever life remains. Hospice is not a place but a service that can be provided at home, in a hospital, or a facility. Hospice is not a way of giving up but a way of living fully and peacefully. You can help your loved one by considering hospice as an option when their condition becomes terminal and their life expectancy is less than six months. You can also help them by discussing their hospice goals and preferences with them and their healthcare team.

Conclusion

Having a loved one with End Stage Renal Failure can be challenging, but with knowledge and compassionate care, you can support them on their journey towards a good death. Stay informed, communicate openly with the healthcare team, and provide comfort and emotional support throughout this grim time.

Resources

National Kidney Foundation – Understanding End-Stage Renal Disease (ESRD)

You and Your End Stage Renal Disease Network

Penn Medicine End Stage Renal Disease

End-Stage Renal Disease (ESRD)

Providing Comfort During the Last Days of Life with Barbara Karnes RN (YouTube Video)

Preparing the patient, family, and caregivers for a “Good Death.”

Velocity of Changes in Condition as an Indicator of Approaching Death (often helpful to answer how soon? or when?)

The Dying Process and the End of Life

The Last Hours of Life

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Gone from My Sight: The Dying Experience

The Eleventh Hour: A Caring Guideline for the Hours to Minutes Before Death

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Eldercare Locator: a nationwide service that connects older Americans and their caregivers with trustworthy local support resources

CaringInfo – Caregiver support and much more!

Surviving Caregiving with Dignity, Love, and Kindness

Caregivers.com | Simplifying the Search for In-Home Care

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Compassionate Caregiving series

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Take Back Your Life: A Caregiver’s Guide to Finding Freedom in the Midst of Overwhelm

The Conscious Caregiver: A Mindful Approach to Caring for Your Loved One Without Losing Yourself

Dear Caregiver, It’s Your Life Too: 71 Self-Care Tips To Manage Stress, Avoid Burnout, And Find Joy Again While Caring For A Loved One

Everything Happens for a Reason: And Other Lies I’ve Loved

The Art of Dying

Final Gifts: Understanding the Special Awareness, Needs, and Communications of the Dying

Top 30 FAQs About Hospice: Everything You Need to Know

Understanding Hospice Care: Is it Too Early to Start Hospice?

What’s the process of getting your loved one on hospice service?

Picking a hospice agency to provide hospice services

National Hospice Locator and Medicare Hospice Compare

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