Caring for dialysis patients

Acknowledge your feelings

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 assist 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 are 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

There are different dialysis treatment options but one thing that most have in common is the importance of sticking to a treatment schedule. For some dialysis treatments, such as with in-centre haemodialysis (in-centre HD), sticking to a set dialysis schedule is crucial. For home haemodialysis (home HD) and peritoneal dialysis (PD) treatments,there is often more flexibility in terms of when and how often you treat. It is therefore a good idea that early on you familiarise yourself with the schedule and help make sure it is adhered to. Be sure to talk to your healthcare team about whether scheduled treatments are part of your loved one’s dialysis journey.

Understanding your new normal

Even though things will change in your life, life does not stop at diagnosis. Actually, it is quite possible to live a life close to what you are used to. But dialysis will require lifestyle changes for you and the person you care for. This may include changes to diet, exercise, travelling and potentially your life at work, depending on your loved one’s specific dialysis therapy and how much carer responsibility is required of you. You can read much more about the impact dialysis can have on everyday life.

Getting to know a new language

When the person you care for begins peritoneal dialysis, you will encounter many new words and phrases. One of the most important is “peritoneum.” The peritoneum refers to the lining of your abdomen. The peritoneum is used in PD as a natural filter to mimic the abilities of a kidney in peritoneal dialysis. 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

Peritoneal dialysis requires many different items (such as fluid bags) that will need to be stored at home. Adequate room in a clean and dry space will be required for storage. These will need to be replenished frequently, typically through a delivery to the home of the person you are caring for. 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. If you are uncertain about any changes at home ask your loved one’s healthcare team as it is likely that they helped patients with similar issues in the past.

Sleeping and new bedside routines

PD exchanges may take place during the night, with a dialysis machine next to your loved one’s bed. The set-up and the dialysis machine will create some light and noises, and it is possible that these things may be noticed during 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 familiarise yourself with the new routines of your loved one.

The importance of cleanliness

Peritoneal dialysis requires a catheter (tube going into the abdomen) to fill and drain the liquid (dialysate) that cleans the blood during each exchange. It is crucial that the catheter comes out from the skin (the exit site) and the catheter are kept clean. It can be a good idea that you participate in the consultations, so that if needed you can share the responsibility of keeping a high level of cleanliness and understand what is needed to do 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 this activity is right for them.

It’s OK to take some “me time"

Caring for dialysis patients can be challenging for you 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 can help keep your energy up to stay positive. You can also find out if being part of a caregiver network is something for you. Make sure to find the balance that is right for you.

The home may need an update

Home HD requires pure water to create dialysis fluid. This means that changes may be required to the plumbing in the home of the person you are caring for, to provide the required water quality. If home HD is planned, the healthcare team will visit the house to assess the suitability and the plumbing requirements. The hospital will cover the majority of the plumbing and electrical costs required for home HD.

Your role is critical in caregiving

Home haemodialysis can be done several times a week for 3 to 8 hours at a time. Depending on how well the person you are caring for is, they may need help with their dialysis each time, which can be a large commitment from you

The use of needles is required when undergoing home HD. Your loved one often is able to learn to do this themselves, but some patients require a carer to assist them with this. The healthcare team, your loved one, and you, will agree on a training plan to determine the best process of how to needle for therapy, and how to manage this in your home.

Settling into a new routine

The person you care for may choose to do their dialysis during the day or throughout the night. There is some flexibility surrounding when they perform their treatments, but it is important that they undergo the entire treatment each time, so learning how to complete all the different steps is helpful. Being there during dialysis can be a good support and can help ensure treatments are carried out safely.

Getting comfortable

The decision of where in the home the person you care for should undergo HD is important. They will be spending many hours in the same location so it should be comfortable for the both of you. Make sure you choose a location that does not interfere with other daily routines and can offer sufficient comfort throughout the treatments.

Keeping track

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

• Other symptoms such as cold or flu
• Changes in sleep patterns
• Difference in mood or behaviour
• What limitations you see in their activities
• Any questions that arise from you or the person you care for

For some, it could be helpful to keep a diary of changes to make sure you are capturing important details. 

Staying well-equipped

Home haemodialysis requires dry storage space for supplies. You will need to select a location that works for both of you, and you’ll need to make sure there are enough supplies for at least a week of treatments. Making a plan for where and how to store these supplies may help you prepare for supporting home HD.

Give yourself a break

Your role in your loved one’s care is very important, so it is essential that you take some time for yourself and continue to do the things you enjoy on your own. This helps relieve stress and can do wonders for your energy levels and mood. If you want to, search for local caregiver support networks, where you might find additional help and advice.

Getting to and from the clinic

Some people on dialysis are able to drive themselves to or from treatment. However some people can feel tired or unable to drive to and from the clinic. If they are unable to drive themselves, you may choose to bring your loved one to dialysis yourself. There may also be the option of hospital transport to and from dialysis. For patients using this service, this may mean being picked up, up to two hours before dialysis and waiting for transport afterwards to take them home. It is best to consult with the renal team to understand the transport options particular to your loved one’s hospital.

A new and private aspect to their life

The person you care for will be spending a lot of time at their dialysis centre and will develop new relationships with people at their clinic. This means that they will now have a large quantity of their life that you will not be a part of. You may feel left-out and this is perfectly normal; it helps that you 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 is getting things done around the home, staying active or spending time with friends, use this time to focus on what makes you happy.

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 is 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 is important that you take notice of the details of what is happening in the life of the person you care for so you can support them in discussions with their doctor.  Watch out for areas such as:

• Illness symptoms such as cold or flu
• Changes in sleep patterns
• Difference in mood or behaviour
• What limitations you see in their activities
• Issues that need to be addressed with their health care team

For some, it could be helpful to keep a diary of changes to make sure you are capturing important details. This can also help you cope with the changes.