Having a loved one on dialysis can be challenging, whether it’s your mom, dad, brother, sister, or partner. Between dialysis days, rest days, and all of life’s responsibilities, it can be hard to know how to best support your loved one through their journey; you are not alone in this. Many people are going through this, and there are resources available to help you support your loved one. Below are ten tips to help you support your loved one who is on dialysis.
Get Educated and Take Notes
If your family member is just starting dialysis, the first few treatment sessions can be stressful. Although they will have learned what they need to do, your loved one will likely have been in information overload during training and may not remember everything that was said or that they saw during training. You can help support your loved one by learning as much as you can before they start dialysis, including taking any classes offered and taking detailed notes during trainings. Sharing your notes with your family member will help answer questions that might come up later and also help you both discover areas where additional information may be needed.
Note-taking is also helpful after your relative has been on dialysis for some time, as their health can change over time due to changes in the dialysis prescription, new medications, or dietary changes for example. Keeping track of any changes that occur in their overall health, their laboratory test results and food eating habits can help you and your loved one communicate effectively with their healthcare team to identify solutions to problems that might occur.
Take notes during trainings that are offered.
For in-center hemodialysis, you can take online or in person classes on what to expect before they arrive for the first day of treatment. In addition, ask for a tour before starting in-center hemodialysis to become better familiar with what the clinic looks like.
For home dialysis, you can take classes with your family member to learn along with your loved one and see where you can specifically help.
Create a quick cheat sheet of key information and keep it with you.
Key information that you learned during trainings
Current list of the medications your loved one is taking
Any allergies your family member has to specific medications
Dialysis center & nephrologist team phone numbers
Establish a schedule and stick to it
Whether your relative is conducting home dialysis or has opted for in-center dialysis, having a regular schedule keeps everyone on track and allows for your non-dialysis related activities to continue as scheduled.
If your loved one is having in-center hemodialysis, it is important to get your family member to the dialysis center on time with time to spare to ensure that they get the full treatment. Because dialysis is doing the job of the kidneys, which is normally 24-hour seven days a week job, in just 12 to 16 hours a week, it is critical that no time is lost. Any delays can result in lost treatment time for your loved one’s dialysis treatment, which can be detrimental to their overall well-being. Having a schedule established at home will allow you to help your loved one get ready and arrive to the dialysis clinic on time.
There will be times of course when life plans get in the way of arriving at the scheduled time, the dialysis staff will understand, you just need to make sure you communicate to them as soon as possible to make alternative arrangements for your loved ones’ dialysis treatment.
Keep your set schedule so that non-dialysis related activities are kept
Arrive on time to in-center hemodialysis center to ensure full treatment
Notify the dialysis center if you will be late as soon as possible
Learn about food and drink restrictions
A major adjustment for your loved one and you will be learning which foods are okay to eat and how much fluid they are allowed in a day. With everything else that your loved one is adjusting to, you can help support them by also learning the list of foods they can have and how much fluid is okay to drink between treatments.
The dietician in the dialysis clinic is a wealth of knowledge for any questions you or your family member may have about dietary concerns. Oftentimes, the dietician can provide you with easy print-outs that you can keep around the kitchen for quick reference if you’re not able to consult the dietician first.
At first, it may seem daunting when considering all of the foods that your loved one can’t have, however, once you have both practiced it for a bit, you’ll come to realize that with just a few tweaks, the options are abundant. So, don’t hesitate to ask the dietician questions as you get familiar with this new way of eating.
Understand what foods are good and not good for a person on dialysis
Place a list of acceptable foods inside cabinet doors in your kitchen as a reminder
Learn how much fluid is okay for your family member to drink between dialysis treatments
Help Track Symptoms & Blood Test Results
Your family member might not recognize slight changes that may occur over days or even weeks as they are just focused on living their daily life and making it through to the next dialysis session. You can help your loved one by tracking their symptoms and their blood test results.
After a dialysis session, it is normal for your family member to feel drained and need to rest. Taking note of specific symptoms, such as increased difficulty breathing or persistent dizziness can be helpful in picking up on issues, such as anemia (low hemoglobin count) or fluid imbalance- both of which the nephrologist, and the dialysis staff can address. Your loved ones’ regular blood test results will also give you an indication of how they are doing, so learning about specific blood test results and what is the expected range for a person on dialysis is important as well. Never hesitate to report any new or ongoing symptoms to your family members' dialysis team as this can help the dialysis team determine if any changes in treatment are needed and improve the quality of dialysis your loved one receives.
Symptom tracking is not limited to symptoms that are physical. If you notice a sudden change in your relative’s mood, this may also indicate certain conditions, such as mental concerns or even anemia (low oxygen to the brain and body as a result of low hemoglobin), so anything that feels significant to you is important for the dialysis team to be aware of.
Make written notes of any physical symptoms
Track key blood test results
Make written notes of changes in mood
Encourage your loved ones to pursue their interests
Continued pursuit of interests outside of dialysis is another great way for your loved one to remain engaged and thrive while on dialysis. Encourage your relative to pursue old interests or new ones. Some great hobbies for people on dialysis include learning a new creative art, such as painting, pottery, or photography; developing a green thumb (indoor or outdoor gardening); traveling (the social worker and clinic staff can help arrange for your family members treatments in different clinics around the country); and learning how to cook new dialysis-friendly recipes.
While dialysis can be time-consuming, make sure your partner or loved one is taking the time to still stay involved in other activities as well. Finding an activity that you both enjoy can be a great way to also stay connected to one another and can have other benefits, such as increased levels of contentment and happiness, so get out there and explore.
While your loved one may not be able to do everything he or she was able to do before, it is important that your family member stay active exercising and doing things they enjoy. Being active can help your loved one stay fit physically and mentally, and provides opportunities to socialize, all of which can help with maintaining a positive mindset.
Help your loved one schedule a walk or other activity with you or a friend
Contact local recreation centers to see what they offer (YMCA clubs for example can offer chair yoga or other modified activities that involve everyone. Senior pickleball and tennis leagues might also be available locally)
Speak with the social worker at the dialysis clinic for additional suggestions
Any activity is better than none, so get your family member and yourself out and have some fun!
Encourage your loved ones to care for themselves
Another way to empower your relative as they are transitioning or continuing their dialysis journey is to encourage them to continue to care for themselves as much as possible. There are many changes that your loved one will be experiencing with dialysis, which may mean that he or she is not able to do everything the same as before. Finding activities that won’t be too stressful or strenuous can help your loved one stay engaged and feel productive.
Do your best to keep an eye on your loves ones capabilities as they continue on dialysis, they might not want to do certain things because they are tired right after dialysis, but later in the day they might want to complete or participate in tasks, so remember the timing of when you are asking or reminding them to do something , so that they have the best chance of successfully completing the activity.
It is also equally important to encourage your loved one to ask for and accept help, and rest when they feel they need it. The pressure to continue doing all the same things may lead to fatigue or emotional distress in both you and your loved one.
Encourage loved ones to maintain regular self-care activities when they are rested
Remind them to ask for help when they need it
Empower your loved one by sharing resources
For many people, starting on dialysis can create a sense of loss in one’s life. However, as a caregiver, you can help empower your loved one by sharing resources that you find helpful. Staying informed on the latest research or suggestions for coping with kidney failure can help you and your relative feel informed, empowered, and involved in the plan of care.
If you have trouble finding the information you are looking for check with the social worker at the dialysis center, as they are familiar with a variety of resources, including the National Kidney Foundation (NKF), the American Association of Kidney Patients (AAKP), and the Renal Support Network that offers information and help to people on dialysis and their care partners. Additionally, as a caregiver, you may be able to join a local support group solely for those caring for people with kidney disease. These support groups not only serve to lift you up during hard times, but are also great sources of information.
Check with the social worker at the dialysis center for information when you have trouble finding answers on your own
Learn from national organizations like the National Kidney Foundation and American Association of Kidney Patients
Join the local caregiver support groups to learn about additional resources
Find out about receiving services in your home
If your family member seems to need some help, it may be beneficial for you both to find which services are available to help with things like household chores, meal prep, and even transportation needs. Having help with even one aspect of keeping up your home will help to free up time and minimize stress for both of you. Reach out to your social worker in the clinic and local groups in your area such as the National Council on Aging or Elder Services organizations, or if you are affiliated with a religious organization they might know someone who can provide services for you and your loved one.
Take Time for Yourself
Last but not least make sure to take time for yourself. According to a 2020 study, one in five Americans are now family caregivers. Of concern in the study was the fact that caregivers’ health had declined in the previous five years. Oftentimes, the pressure placed on the caregiver can be overlooked and the stress can become overwhelming, so avoid burnout and take time to enjoy self-care activities. Some great ideas for self-care include a massage, lunch with a friend or other family, going to a movie, or even going for a daily walk. If you have concerns about the interruption in care for your loved one, there are agencies that will provide respite care for a day or even several days. Again, discuss this with the social worker at the dialysis center to find out more and see the resources section below.
Set aside “me” time
Accept help from others and ask for help when you need it
Do something to relieve stress (ex's: exercise, meditation, long walk, evening with friends)
Pay attention to your own mental and physical health
Connect with others who understand what your experiencing
Your role as a caregiver is important, know that you are not alone and there are resources available to help you! You matter. Take the time to learn about what is available, it will help you in the long run, so that you can both live your best lives!
A Caregiver’s Wish List: Tips on How Dialysis Patients Can Help Their Caregivers. AAKP.
Caregiving in the US 2020. The National Alliance for Caregiving.
Nutrition and Dialysis. National Kidney Foundation (NKF).
Family and Caregiver Resources. National Kidney Foundation (NKF).
Caregiver’s Role for In-Center Hemodialysis. Fresenius Kidney Care.
Dialysis and Kidney Health Class. Fresenius Kidney Care.
Nancy’s House: Caring for caregivers.
From one caregiver to another podcast with Kay Coughlin
What is fluid management and why it is important
Travel planning when on dialysis