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Most patients diagnosed with end stage renal disease (ESRD), who must undergo dialysis, take charge of their care. They drive themselves to doctor’s appointments and dialysis treatments. They take their medication in proper doses and in a timely manner. Sometimes, they will rely on a spouse or partner for support if they are feeling ill or need help. But if the patient is too young or too old to do these things, responsibility often falls to an adult family member. When your child or elderly parent must rely on you to make decisions regarding treatment, the responsibility can be overwhelming. Here’s an overview of what you can expect when you become the primary caregiver for a person who has ESRD. 

Your initial feelings and emotions

No one wishes to see their child or parent become ill, especially to the point where they must undergo dialysis. Being worried about your loved one’s condition and about how you will cope is natural. Educating yourself about kidney disease and dialysis will go a long way in relieving any fear you may have. 

Grief

Many people experience grief. As a parent or an adult child, you will mourn the fact that your loved one is not the same. Kidney disease may take away some of their energy and vitality. Dialysis treatments will also take up time. This can alter the patient’s lifestyle as well as the primary caregiver’s lifestyle. Try to remember that treating a serious illness can help the patient feel better and will take you to another phase of healing. 

Anger

Anger is another common emotion that often happens when you feel weighed down and helpless. When caring for a child or a parent, you may feel that you need to be extra cautious in order to give the best care possible. The amount of information needed to make decisions about a patient’s care can be overwhelming. No one person can possibly do it all, and do it all perfectly. As a result, you could feel angry at yourself for being unable to provide the level of care you would like, or for being unable to prevent the disease from happening. You may even feel anger and resentment towards the patient for not taking better care in the first place and placing this burden on you.

Guilt

Grief and anger can lead to guilt. You may think to yourself: “What right do I have to feel this way when a loved one is suffering?” Such self-talk can make you feel petty and small. People think they need to be noble and selfless when it comes to caring for their parent or child. To be anything less is to be a bad person. This is not true. These emotions are part of being human. 

Another type of guilt is called “survivor’s guilt.” Parents will often feel guilty for being healthy when their child is sick. Or they may feel that they somehow caused the disease through neglect. Adult children can feel the same way toward their parent.

The important thing to remember about these emotions is that you need to let them out. Do not feel you need to suppress or hide them, and do not be ashamed for having them. Not giving your emotions an outlet will make them more powerful, and your feelings of guilt may increase. 

Talking about your emotions will make you feel better. Ask the dialysis center’s social worker to refer you to a support group of other caregivers who are dealing with the same issues. Many hospitals have support groups and invite educational speakers to talk. You can learn many things about ESRD and dialysis. Listen to educational speakers—who cover a variety of topics—and can give you tips on how to cope.

Dealing with the patient’s feelings 

The person undergoing dialysis will have similar emotions. They, too, are grieving the loss of their kidneys that they thought would continue to function normally. Their lifestyle has changed, and they are frightened about the future. They will feel angry at the fact that this has happened to them. They may feel jealous of you because you are healthy. Many elderly patients will feel guilt for being a burden on their adult children. 

Talk about the feelings you both are having. Acknowledge their feelings and ask them to acknowledge yours. Opening the lines of communication is very important. It can prevent misunderstandings. With elderly parents, it is important to discuss expectations. Do they expect you to be their primary caregiver or do they wish to hire someone? Adult children are often surprised their parents opt to have a stranger help them. Parents do not wish to be a burden on their children. If this is not discussed properly, adult children may believe this signifies the parent does not trust them, and could lead to feelings of rejection and hurt. 

If your child is undergoing dialysis, you may not wish to express all the emotions you are feeling for fear of burdening them. That is fine. However, children are very aware. If they ask, do not deny your feelings. They make take this as a cue from you that it’s not okay to talk about such things. Children should be encouraged to talk about their thoughts and feelings. You can help them understand and deal with them. This is a valuable resource for children and can boost confidence in their ability to handle difficult times. Your child will feel much more secure knowing they can talk to you and find a solution. 

What can I expect the first month?

Many things must be done before someone undergoes a first dialysis treatment.  First, the health care team will ensure that you understand what dialysis is and how it works. They will answer any questions you have. The doctor may also prescribe different medicines and the dietitian will give you specific guidelines regarding food and fluid intake. A social worker will be available to discuss financial concerns and make appropriate recommendations.

Depending on what kind of dialysis treatment the doctor recommends, a vascular access will need to be surgically created in the arm for hemodialysis or abdomen for peritoneal dialysis. In hemodialysis, the access is the line that will take blood from the body and feed it into the dialysis machine to be filtered. The clean blood is then put back into the body. If the doctor recommends peritoneal dialysis, a small tube will be inserted into the patient’s abdomen. This tube will be used to fill and empty the stomach cavity with dialysis solution (dialysate), which will filter the blood. Children need help in caring for their access, especially after surgery. It must be kept clean. The elderly also may need assistance in ensuring their access is clean, functional and infection free. 

If you opt to have hemodialysis performed at a dialysis center, you’ll be getting to know the health care team including: nurses, technicians, dietitians, social workers, facility administrators and others. If you elect to have the patient undergo home dialysis (either hemodialysis or peritoneal dialysis), you will be trained in the procedure and how to use the equipment. All centers require someone other than the person undergoing treatment to monitor the hemodialysis equipment. Children and the elderly should never be left alone when undergoing dialysis.

Peritoneal dialysis can be done with a machine called a cycler or done manually. If done manually, the bag of dialysate must be emptied and changed several times a day. A cycler will run at night while the patient is asleep.

Even though your loved one has started treatment, you will still need to go to doctor’s appointments. The doctor wants to see that your child or parent’s health is improving. If it is not, or if complications set in, the doctor will want to know as soon as possible.

If your loved one goes to a center for dialysis, make sure to keep all appointments. Dialysis at a center can be time consuming and may not always be convenient, but it is necessary to keep your child or parent healthy. For those who choose peritoneal dialysis or home hemodialysis, a consistent schedule should be followed.

First year

At this point, you have probably adjusted to the treatment schedule and dialysis has become part of your lifestyle. Perhaps you’ll find your parent or child is more comfortable with dialysis. Of course, there may still be times when they will be fearful or worried. That’s a normal part of the process.

As the primary caregiver, you’ve gone through the same ups and downs. In addition, you may feel tired and worn out. Sometimes caregivers are so involved in taking care of the patient, they forget to take care of themselves. It’s important to remember that you need to take some time for yourself, whether it’s a short break during the day or a trip somewhere. 

A new perspective

Your initial reaction to dialysis was probably based on lack of information. We all have fear of the unknown. But as you help your loved one undergo dialysis, you may see the symptoms of kidney disease improve, giving the patient back the energy they had lacked. It’s rewarding to see how patients with kidney disease benefit from dialysis. And it is particularly satisfying to know you helped your love one through a difficult time. If you are involved in a support group, share what you have learned. This information could help others who are in a similar situation.