Support For Chronic Kidney Disease Caregivers

Reviewed by: HU Medical Review Board | Last reviewed: February 2023

Being a caregiver to someone with chronic kidney disease (CKD) is life-changing in many ways. Your daily routines change, including those around household chores, delivering treatment, and navigating healthcare. You may be less able to travel. And you may have to make adjustments to afford the cost of treatments and medical equipment.1

There are emotional and mental changes as well. Your relationship with your loved one may shift – especially as the CKD progresses to later stages. When daily care of a person with kidney disease falls to you, it can be incredibly taxing and draining.1

In fact, research has shown that as a chronic disease like CKD progresses, the strain on the care partner also increases. There is a strong link between the decline in physical function of the person with kidney disease and a decline in the caregiver's health and well-being.1

Being a caregiver is challenging – even for the most well-prepared. By being aware of these challenges, you can take proactive steps to cope with the demands of caregiving.1,2

Acknowledge your feelings

It is completely normal to feel anger, grief, guilt, and depression when a person you love is faced with a CKD diagnosis. You may have strong feelings around your new role and the changes in your relationship.1,2

Find ways to express your feelings in a constructive way. Try not to place blame or be hurtful to anyone. This may take the form of:1,2

  • Writing in a journal
  • Talking with a close friend
  • Speaking with a therapist or counselor

Seek support

As a caregiver, it is critical that you have a support system. This can include friends, family, and support groups. Support groups can connect you with other caregivers who understand what you are going through. They can also provide a safe place to share your thoughts and emotions.1-3

The American Association of Kidney Patients lists caregiver support groups based on what state you live in. Take a look to find one that is in your area.3

Counseling can also be helpful. Social workers, therapists, and psychologists are trained to help caregivers with coping and dealing with chronic disease.1,2

Take advantage of community resources

Your community likely has a variety of resources that you can take advantage of if you need to. Many of these are free and run by volunteers. A few to consider include:2,4

  • Meals on Wheels – Delivers free, nutritious meals to your home
  • Paratransport – Offers complimentary transportation to and from medical appointments
  • Area Agency on Aging – Provides assistance and care for older people in the community
  • Lotsa Helping Hands – A resource where family, friends, and community members pitch in with tasks like transportation, household chores, and cooking

Know your limits

Caregiving takes a toll on your physical and mental well-being. If something is beyond your comfort level, do not be afraid to ask for help. You have not failed by asking for outside assistance. Give yourself a break, and remember that nobody is perfect.1,2

Nurture your relationship

Chronic kidney disease can place a lot of stress on relationships, so your relationship may change. Set aside time to connect with your loved one beyond your caregiving duties. Share memories together, sing songs, and laugh together to help you stay close.1,2

If you carry any painful memories, past wrongs, or hard feelings toward your loved one, work on forgiving them. Holding on to resentment can make caregiving more difficult.1,2

Take time for you

Caregivers cannot provide compassionate care if they are stressed, tired, or burned out. You need time away from your role to recharge and tend to your own needs. Set aside time to do things that relax or refresh you.1,2

Here are some activities you can try:1,2

  • Exercise
  • Take a nap
  • Get together with friends
  • Listen to uplifting music
  • Meditate

Find meaning in your role

Being a caregiver is challenging. But it can also be rewarding. The meaning you give to any job or role you have makes a huge difference in how you feel. Many caregivers note that their role makes them feel good and gives them a new way to feel grateful for family and friends.1,2,4

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