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Caregiver Good Start Guide

When you find out someone you love has Chronic Kidney Disease (CKD) and will begin Peritoneal Dialysis (PD), you may want to help but not know how. Caring for a PD patient can be overwhelming, especially when you are a part of that person’s daily life. Being a caregiver is a special responsibility, and you should take pride in knowing that your loved one has entrusted you with such an important role in their life. This guide will help you get started on the path to taking care of them, helping you understand what you can expect, where to turn for help, and what you can do to help you and your loved one live a full life. If you have any questions about the information discussed in this guide or other topics not discussed, be sure to talk with your loved one’s nurse or doctor about it.

Preparing for PD

As a caregiver, you may feel overwhelmed at all there is to learn about CKD and PD, but it’s important to get involved and take an active role in your patient’s care. Research and education will go a long way in helping you feel more comfortable and hopeful about CKD.

Your feelings and involvement

Your initial feelings may include grief, fear, anger, sadness and even guilt. All of these emotions are normal, but it’s important that you deal with them appropriately. It’s easy to become so involved in your loved one’s care that you forget to take care of yourself.  You may feel guilty about taking time for yourself, but it’s important that your needs are met too.  If you are overwhelmed, stressed or unhealthy, it will be more difficult for you to care for someone else. A patient’s need for your support can be stressful; don’t be afraid to be honest and ask for help when you need it. There also are many support groups available for caregivers; ask your patient’s social worker to refer you to a few that might be helpful.

The patient’s feelings and your role

As a caregiver, your greatest role is being there to support and encourage your loved one. When they begin dialysis, they may feel emotions that are similar to yours. They may be overwhelmed, frightened and nervous at this new change in their life. During this time, it’s important to practice open communication and talk about how each of you are feeling. Ask each other questions, and take time to discuss how you can help and what each of your expectations are. Try to remain as positive and upbeat as possible, as patients can easily become saddened and negative about their future. Remind them that they are not defined by their disease.

PD care team

When taking care of a PD patient, you are not alone.  While on PD, a patient may have a whole team of people dedicated to making sure they have the best care available, the resources they need, and are living life to the fullest. A patient’s core team is likely made up of their current social worker, nurse, nephrologist and dietitian. Whether you and your loved one need help performing peritoneal dialysis, ordering PD supplies, or have questions about daily activities, the PD care team will be there for help and advice.  No question should be off limits, and they are usually a phone call away.

The first few weeks

Before starting peritoneal dialysis, the patient will need to have a PD catheter inserted into the abdomen, usually near their belly button. This catheter is a soft plastic tube that carries the PD solution to be transferred into and out of the abdomen. This will be an outpatient surgery, allowing them to go home the same day, and they should be able to return to most of their normal activities within seven to ten days.

After surgery you and the patient will participate in a one to two week training program at a dialysis clinic, which will provide you with the education and tools to perform PD safely at home. During this time, you’ll also meet the PD care team, and they may make adjustments to the patient’s diet, fluid intake, and medications. As the primary caregiver, you will be taught everything the patient is taught, including how to order and store supplies, proper cleaning of the catheter, performing PD solution exchanges, and recording important information.

When preparing for the training program, keep in mind that you may need to take time away from work. If you live in a more rural area, you might need to make lodging arrangements, and/or find someone to help watch your children for an extended period of time.

Once the training program is complete, you and your loved one will go home, and a nurse will check in frequently for the first week, or until you both become comfortable with the process.

The first year

Once you return from the training program, you and your loved one will begin preforming PD at home. Depending on what you have discussed, you may assist the patient in starting their dialysis machine, helping them remember to take their medication, ordering their PD supplies each month, monitoring their diet and fluid intake, and other tasks. If you work, you may also need to speak with your employer about making arrangements for you to attend doctor’s appointments, which will typically occur one to two times a month.

It may take time to adjust to all of the changes, but you should quickly settle into a new day-to-day routine. To make the most of it, it’s important to stay engaged and ask questions when you need to. Always remember, the care team is there for support, no matter what you and your loved one’s needs are.

Living with someone who has CKD doesn’t mean your life has to stop. It’s natural to have questions and take time to adapt, but PD patients and their caregivers are usually able to live a comfortable, fulfilling lifestyle. PD can provide you with freedom, flexibility and satisfaction that can help you and your loved one feel like you’re both living, not just surviving.

For further support

There are many organizations that you can turn to for further support. Below you’ll find a list of websites that will provide more in-depth information on CKD and PD.

American Association of Kidney Patients (AAKP)

The AAKP is a national non-profit organization founded by kidney patients for kidney patients. It's a great place to learn more about kidney disease, find important information and publications, and get support from people who understand exactly what you're going through.

Renal Support Network (RSN)

The Renal Support Network is a patient-focused, patient-run organization. Its website provides a wealth of useful information and support for people affected by Chronic Kidney Disease (CKD) and on dialysis.
Patient-to-patient help and support is only a phone call away on the Patient HOPEline: 1-800-579-1970 from 10am to 8pm PST

This patient-to-patient forum provides an online community of patients who are very supportive of each other and helps new patients and experienced patients with kidney disease cope with the daily struggles of living with their illness.

Culinary Kidney Cooks

A dialysis diet cookbook written by health care professionals.

Home Dialysis Central

Sometimes, you may have a question or just want another patient's viewpoint. On the Home Dialysis Central Forum, you can post questions to, and read posts from, Peritoneal Dialysis (PD) or Home Hemodialysis (HHD) patients, as well as healthcare professionals.

For more detailed information on what exactly a PD patient goes through when starting PD and what you may be a part of, read the
Patient Good Start Guide.

Brought to You By Baxter Baxter