When a family member develops kidney failure, the whole family is affected. Being worried about your loved one's condition and about how you will cope is natural.
Adjusting to Kidney Disease is a highly stressful time. These may be related to your health, the strain of traveling to your clinic appointments, the challenge of keeping up with family and household responsibilities; changes in life circumstances; financial pressures; or conflict in your family/personal relationships.
Whether you are new to attending a Chronic Kidney Disease clinic or have been coming for years, you can expect some ups and downs.
If a parent develops kidney failure, children have questions.
Some children are outspoken and ask many questions, while others may be quieter and afraid of the answers. The goal is to open lines of communication between parents and children of all ages. Educating yourself about kidney disease and will go a long way in relieving any fear you may have.
We share common questions as examples of the kinds of concerns a child might have. If your child does not express his or her circumstances, the questions included may help you begin a discussion with the child about living with kidney failure.
The answers provided are intended only to give you an example of the type of response you might make. Use your own words to make sure it's appropriate for your child's age and understanding.
Most experts agree that it is essential to answer the questions honestly, without giving more information than is asked for.
If you feel you need help to meet your child's need for information about kidney disease and treatment or help you and your child cope with your kidney failure, talk with your nephrologist, and he will guide you to a social worker or psychologist
Common questions or concerns
Chronic Kidney Disease
Why are you so sick all the time?
Kidneys do many things to keep us healthy. One of these is cleaning poisons from the blood. My kidneys are not working as they used to; some bad things build up in my blood.
When the kidneys don't work the way they are supposed to, it is a little bit like a washing machine that does not work right. It may look fine from the outside, but inside there are many essential things that do the work. If something doesn't work right, the washing machine doesn't clean the clothes well.
Why are you in a bad mood?
My bad mood is not your fault and does not mean that I don't love you anymore. There are many reasons why I may feel "down" sometimes:
- I am worried about my health. I worry about the future.
- I don't feel good. I'm sick.
- I don't feel like I used to. I want to do everything that I used to do, but now I can't.
- Things bother me more than they used to. I have lots of worries and don't feel well enough to think about all of them.
- I feel angry, or frustrated, or sad, or scared when I think about being sick.
- Often when I seem impatient or angry, I'm not mad at you. I don't have as much patience as I used to, but I will try to be more patient.
Why don't you play with me anymore?
Right now, I'm feeling too tired for active things. I want to be able to play like I used to, and maybe when I get used to my treatment and start feeling better, I may be able to do more. But right now, I'm not strong enough.
In the meantime, we can try to think of other things we could do together so that we can keep playing and having fun together. Maybe we can think of some things right now that we can do, like puzzles and games, maybe watching a movie or reading a book.
Why do you have to go to the doctor?
The doctor needs to watch how my kidneys are doing. That helps me take good care of myself, so I can help to keep my kidneys working longer. When I go to the doctor's office (or clinic or hospital), many people work together to help me feel better. Doctors, nurses, social workers, and dietitians all work together to help me.
Are you going to die?
I hope I will live for a very long time. But everyone dies at some point, so yes, some time I will die. I am making changes in the way I live to help me stay alive longer.
Why do so many things have to change in our lives?
Because I am sick, we need to work together to keep our family running smoothly. Each of us will have to learn new jobs, and each of us can do things to help. Like cutting the grass, bringing in the groceries, and staying with a neighbor sometimes after school if I can't be there because of a doctor's appointment.
Will this kidney disease last forever?
Yes. I will have kidney disease for the rest of my life. But, with the help of the healthcare team, some things about it may get better. We can do some things as a family to make it better.
First, we can divide the jobs that we have to do. Everyone can help. We need to develop new hobbies and activities to do together to have fun. We need to let everyone have his/her way of handling the worry.
Some people may be angry, some sad, some may want to be by themselves, and some people may want to talk about it. Each person has his/her way, and each way is okay.
Can this happen to me?
Some kidney diseases run in the family. (Note: Your doctor can give you specific information about your condition.) However, you cannot catch kidney disease.
Why do you have a band-aid on your arm?
To cover up the hole where the needle was during dialysis. For the same reason that you put a band-aid on your knee if you scrape it to keep your skin clean while it's healing.
Does dialysis hurt?
No, it doesn't hurt, but putting in the needles does hurt for a minute. It is hard to sit still for such a long time, and sometimes I don't feel perfect.
Why are you away so much?
I am away so much because the dialysis process takes a long time to clean my blood.
What does the dialysis machine do?
It cleans my blood like a washing machine cleans the dirty clothes. If my kidneys worked the way they should, they would clean my blood all the time. Since they don't, I have to dialyze often.
Can I visit you?
Many units let families visit. I can ask my treatment team to help us plan a visit or a time for you to see the unit.
Are we still able to go on a vacation?
Yes, we will still be able to take our family vacations. But, it will take a little more planning, and I will have to take time out for my treatment.
What is the catheter for?
The tube lets me put fluid into my belly to do some of the cleaning work that my kidneys used to do.
What does the fluid feel like?
The fluid makes me feel full, like I just ate a big meal. It doesn't hurt.
Why do you have to wear a mask?
I have to wear a mask so that germs can't get into my belly.
Will the treatment ever end?
I will always need some treatment. I might change kinds of dialysis or get a transplant.
Will I get to visit you when you go to the hospital for a transplant?
Most hospitals will allow visitors. Most will arrange a time for healthy children to visit a parent.
Will the operation hurt?
Yes. All operations hurt some. The medical team will give me medicines to keep me comfortable while I am healing. After I go home, I might be sore for a while. But I will heal.
Will you wake up?
Yes. The doctors will give me medication to let me be asleep during the operation. When that medication wears off, I will wake up.
Why can't I kiss you? Why can't people come to visit?
When I first have a new kidney, some of the medications will make it hard for my body to fight germs. During this time, I will try to stay away from people who are ill.
Why do you have to take medicine?
To help the new kidney keep working, I must take medication every day.
Will you have to go back to the hospital?
I will have to see my doctor often to have my blood checked. If there is a problem, I might have to go back to the hospital for a few days to fix the problem.
Will you ever have to go back on dialysis again?
I hope not, but if the new kidney stops working, I will do dialysis again. I might also choose to get another transplant.
Where did your kidney come from?
(In the case of a living donor): Most people have two kidneys and need only one. A healthy person can give one of his/her kidneys to a loved one.
(In the case of a cadaveric donor): Sometimes, when a person dies, the person's family chooses to give his/her kidneys to people who need them.
Have fun with your kids, relax your emotion and enjoy life.
Take the time to talk with your family and your kids.
Try to laugh as much as possible to relax your emotions and help your kids adjust to this new life routine. Watch a funny movie or sitcom, read a comic book or spend time with people you love. Let humor help you and your family keep a perspective on life!
Cry if you need to
Sometimes crying can be as good a release as laughing. It doesn't mean you're not coping, not helping your kids adjust, or you're weak. It can be a healthy release from a build-up of emotions.
Listen to music
Listen to music with your kids and your loved ones. Listening to music can provide a positive distraction and help you pass the time.
Share the things you love to do with your kids. Whether it's gardening, going to the beach, reading a book, or cooking.
Opt for optimism
Positive attitudes have the power to diffuse stress, and they will help your kids adjust in a better way. By learning to "look on the bright side," you can help counteract the adverse effects of stress. Sometimes the negative statements that run through your mind can feed into a negative attitude, and that will affect the way your kids adjust to this new routine.
You might need help with your kids through all of these changes; talk with the people who are closest to you. Let them know how you are feeling and take time to listen to their concerns as well.
Your nephrologist, APRNs, and social workers are also available to assist you and your family in understanding and cope with your experiences. Please do not hesitate to contact your nephrologist by telehealth or ask to see him/her while you are on dialysis if you are not feeling well.
You have a caring team of people available to help.