Caring for Dialysis Patients

It’s Perfectly Normal to Feel Overwhelmed
 

At first, dialysis brings many changes to your life, and there might be days where it feels like there is too much to manage. As a result, adapting your lifestyle to care for someone on dialysis can sometimes feel like an overwhelming experience.  Acknowledge and discuss the difficult aspects of your role with the one you care for, their healthcare team and those you're close to. Caregiver support networks might also be a helpful resource for you, as you can connect with others who are experiencing similar challenges.
 

Planning and Scheduling Are Key
 

While there are different dialysis treatment options, one thing that most have in common is the importance of sticking to a treatment schedule. For some dialysis treatments, such as with in-center hemodialysis (ICHD), sticking to a set dialysis schedule is crucial. For home hemodialysis (HHD) and peritoneal dialysis (PD) treatments, there is often more flexibility in terms of when and how often you treat. It's therefore a good idea that early on you familiarize yourself with the established schedule and help make sure it's adhered to. 
 

Understanding Your New Normal
 

Even though things will change in your life, life does not stop at the diagnosis. Actually, it's quite possible to live a life close to what you're used to. But dialysis will require lifestyle changes for you and the person you care for. This may include changes to diet, exercise, traveling and potentially work-life balance depending on the specific dialysis therapy. You can read more about the impact dialysis can have on everyday life.

Getting to Know a New Language
 

When the person you care for begins PD, you will encounter many new words and phrases. One of the most important is “peritoneum.” The peritoneum refers to the part of your abdomen that is used as a natural filter to mimic the abilities of a kidney in PD. This is just one of many phrases you will probably hear along the way, along with exchange, cycler, catheter, and many other terms. Learning these may help you feel more in control. You should never hesitate to ask the healthcare team if there is anything you need explained further.

Changes at Home

PD requires many different items that will need to be stored at home, for example fluid bags. You will need to make adequate room for these in a clean and dry space. You will also need to frequently have these replenished, typically through a delivery to your home. Making a plan for how and where to store these, and making space for the supplies, might be helpful in your preparation as a caregiver.

Sleeping and New Bedside Routines

PD exchanges may take place during the night, with a dialysis machine next to your bed. The set-up and the dialysis machine will create some light and noises, and it's possible that you will notice these things while you sleep. It may take some time to get used to, but it will become familiar over time. If possible, attend a training session where you can see (and hear) the process to familiarize yourself with the new routines.

The Importance of Cleanliness

PD requires a catheter to fill and drain the liquid (dialysate) that cleans the blood during each exchange. It's crucial that the exit site and the catheter are kept clean. It can be a good idea that you participate in the consultations, so that you can share the responsibility of keeping a high level of cleanliness and understand what is needed to maintain a healthy exit site.

Keeping Yourselves Active

Like anyone else, people on dialysis feel and do better by staying active. You can participate in many activities together and you should encourage the person you care for to keep being involved in their work and hobbies. Just be aware that you should always speak with their doctor to ensure that a particular activity is right for them.

It’s Okay to Take Some “Me” Time

Caring for dialysis patients can be challenging for you both emotionally and physically. Getting out of the house and spending time with others is a good way to take a break, talk about your feelings and keep your energy up to stay positive. You can also explore being part of a caregiver network.  Make sure to find the balance that is right for you.

Getting to and from the Clinic
 

As the person you care for may be fatigued or unable to drive to and from the clinic, you may need to transport them. It helps to be ready in advance to drive them or have organized other means for transporting them to their appointments. For patients needing to travel by hospital transport, this may mean being picked up, up to two hours before dialysis and waiting for transport afterwards to take them home.

A New and Private Aspect to Their Life

The person you care for will be spending a lot of time at their dialysis center and will develop new relationships with people at their clinic. This means that they will now have a large part of their life that is separate from you. You may feel left out and this is perfectly normal; it will help to discuss your feelings with them and those close to you.

You Will Have More Time to Yourself

As the person you care for will be spending many hours at the clinic, you can take this time to do things for yourself. Whether it's getting things done around the home, staying active or spending time with friends, use this time to focus on what makes you happy. This is a key differentiator for ICHD vs. home hemodialysis (HHD).

Ask as Many Questions as You Like

At the beginning, you will have to make many choices and there will be a lot of new information to process. It's perfectly normal to ask many questions or feel confused. The healthcare team at the clinic should take the time to address these with you. Just know that in time, dialysis will become routine and familiar.

Be the Eyes and Ears at Home

It's important that you take notice of the details happening in the life of the person you care for so you can support them in discussions with their doctor. These include:

• Other symptoms such as cold or flu
• Changes in sleep patterns
• Difference in mood or behavior
• Limitations you may observe in their activities
• Issues that need to be addressed with their healthcare team

For some, it could be helpful to keep a diary of changes to make sure you're capturing important details. This can also help you cope with the changes of caring for a dialysis patient.