Kidney Chat: Ask a Caregiver with Frances Ashe-Goines

Learning you need to start dialysis may be overwhelming. There is a lot to think about when choosing the best treatment option for you. Starting dialysis also means creating a new normal for you and your loved ones. While you adjust to regular treatments and change your eating habits, you may also have to rely on friends or family members for help getting to appointments, doing in-home treatments and other daily activities. Knowing what to expect can help you adjust. In this post, AKF Board of Trustees member Frances Ashe-Goines answers questions about starting dialysis, drawing upon her experience as a nurse and a caregiver for 20 years for her daughter who lived with kidney failure. 

What if you live by yourself and do not have anyone to help when you start dialysis? Is it possible for you to do things on your own?

It is much better if someone is available to be trained and check in on you during dialysis. You will need support. People who bring others into the doctor's office with them retain more information and help you understand your treatment options.

In some states, a social worker can connect you with services that provide in-home assistance for people undergoing dialysis treatments.

As caregivers, how should we expect patients to feel after their treatments? Is it painful?

Hemodialysis involves sticking a needle in your artery in order to clean and replace your blood, so it can cause some discomfort or pain when the needle enters your body. Because of this, some experienced patients prefer to insert the needle themselves because they know their own body well.

The treatment itself is painless, but it can be very physically tiring, even though you are laying down for treatments. People getting hemodialysis can also develop anemia because they are not producing enough red blood cells, which can also make you feel fatigued.

It is hard to know what to eat when you are on dialysis and sometimes information is conflicting. How do you know if you are eating right?

A doctor or dietitian can tell you if your nutrient balance is correct. But there are lots of reliable resources on AKF's Kidney Kitchen®, which has recipes, food trackers and patient videos with very helpful information.

Some people with kidney disease think they only need to eat in kidney-friendly ways when they are about to go in for their dialysis. It is important to stick to the meal plan your doctor or dietitian creates for you all the time.

It can be hard to adjust, but it is possible to get used to using salt substitutes like lemon juice. The whole family can adjust to a healthier way of eating along with the patient – this also motivates everyone to find the best possible recipes.

How can I support my loved ones when they are starting to adopt healthy habits to manage their high blood pressure or diabetes?

It is important to understand what your loved ones' numbers mean. Pay attention to their blood pressure and insulin levels so that you have a frame of reference when their doctor tells you that they are doing well or poorly. Going with your family member to the doctor and paying attention to these details is a great way to help them – since they might be overwhelmed.

Another great way to support family members is to exercise or adopt healthy eating practices right along with them.

Can people on dialysis travel and go on vacation?

Yes! You have to plan ahead with your social worker and nurse, but you can find dialysis centers in most cities. The patient can go to another center, sometimes at a cost, and dialysis nurses can forward their paperwork to other cities. This can also be a way of finding out about better or alternative treatment practices elsewhere.

What is something you wished you knew ahead of time about caring for someone on dialysis?

Worrying too much can be counterproductive. Remember that the person you are caring for is sensitive to your anxiety and often does not want you to worry. Try to appreciate the ways in which the person you are caring for is staying positive and working to be independent and follow their lead. Sometimes it is important to allow for silence in your interactions with the people you are caring for, so they have a space to feel their own emotions. This might lead them to open up more.

What can health care providers do to help caregivers and their families adjust to dialysis?

Listening is really important, even if your time is limited. Listen to their fears, concerns and worries, and this will guide you in making them feel more comfortable. Telling families a lot of technical details is not always helpful. Sometimes just listening to them and responding to their questions is a better approach.

How do I get on the organ donor list?

Start at DonateLife.net to register for a kidney donation. AKF has more information here.

The responses for this Q&A came from an AKF 2020 webinar titled, "Kidney Chat – Ask a Caregiver." To hear Frances' insightful answers to more caretaker questions, be sure to watch the full webinar.