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.