Helping you live a better life on dialysis

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For Caregivers

Happy coupleEven with you there, your loved one may feel very alone as he or she deals with the news of kidney disease or kidney failure. As one patient said, “I have had this feeling of being totally overwhelmed with this disease. I don't really know how to put into words how I feel. I know I have a lot to be thankful for, but I can’t help but be hurt at what my life will become now. At this point, I feel like the air has been let out of my balloon.”

You may feel much the same. It’s hard to know how to react when you don’t know what to expect. You can start to understand what your loved one is going through by learning about kidney disease and its treatment so you can speak the same language and ask questions. Then, talk honestly with your loved one about your fears and concerns.

How Kidney Disease Feels Physically

For many people, having kidney disease, especially as it gets worse, is like having the flu all the time:

  • Your loved one may feel so tired and weak that it’s hard to walk up a flight of stairs or around the block.
  • He or she may feel cold all the time, as if they have a fever.
  • He or she may have trouble concentrating and may forget things.
  • He or she may sleep more.

It’s common to think that he or she will always feel like this, but these symptoms are most often due to anemia—a shortage of red blood cells—which can be treated.

Because the failing kidneys aren’t removing fluid, swelling can occur in the feet and ankles, and/or hands and face. Sometimes people can’t even put on their shoes. Extra fluid in the lungs can make it hard to breath, and is sometimes mistaken for asthma or pneumonia. Having too much fluid can strain the heart, especially in someone whose heart is already weak due to congestive heart failure or other problems.

Each person is different. Some have a few or even all of the symptoms listed above. Others insist that they feel fine and their kidney disease is only detected by blood tests. The best way to know for sure how your loved one feels is to ask.

How Kidney Disease Feels Emotionally

Most people who find out they have kidney failure and will need dialysis are scared at first. Besides fear, it is common to feel anger and/or guilt. Depression is also quite common with any type of chronic illness, including kidney disease. It’s part of grieving for the loss of health and a “normal” life. Both you and your loved one may be affected. Getting counseling can help you see things in a more positive light. Talk to the doctor, too, about your questions related to what can and can’t be done on dialysis. It may surprise you to learn that nearly anything your loved one did before should still be possible with dialysis.

Throughout your journey with kidney failure, you and your loved one will need to talk openly about feelings on a regular basis. Doing this will keep negative thoughts and feelings in check and will give you both more energy to concentrate on what’s really important to your relationship. Being able to talk openly with one another will also help children or other family members to share feelings and ask questions.

Helping Your Loved One to Remain Independent

When someone has a short-term illness, others “take care” of the sick one until he or she is better. But a chronic illness like kidney disease doesn’t disappear. When people have a chronic illness, they need to learn how to live with it and do as much as possible on their own—even if it isn’t quite all they could do before. Although it’s natural to want to help, be careful that you’re not keeping your loved one from doing things they still are capable of doing. It’s better to encourage and expect your loved one to contribute to everyday activities and chores in any way they can. This is important to self-esteem and feeling worthwhile as a person.

Some families urge a loved one to quit a job and go on disability to “take it easy.” Research shows that people on dialysis who keep working feel better and stay healthier. The doctor can help to determine if work is still possible. If other arrangements or a different type of job would be better for your loved one, the social worker at the dialysis center can provide information. He or she can also provide information on job accommodations that might be needed to keep a job.