How to Be a Caregiver for Someone With Chronic Kidney Disease

One reason, he and Kramer say, is that not enough people at risk get the appropriate tests or follow up on the results. But when people get help at earlier stages, the experts say, they can limit kidney damage and complications.

To assist, they say, caregivers should track those blood and urine results, and encourage their loved ones to follow up with doctors when the numbers look abnormal or get worse — meaning albumin levels rise or blood filtration rates fall.

Kramer says it’s important to know that CKD can worsen without symptoms, which tend to show up late in the disease. Those can include leg swelling, fatigue, itchiness and headaches.

“Your kidneys are just incredibly resilient,” she says. “They work extremely hard. And as you lose kidney function, they just work harder and harder and harder.”

People sometimes learn they have kidney disease only when another health problem leads to testing. That’s what happened with Abe Rosenstein, 74, of Edison, New Jersey, who learned he had high blood pressure and mid-stage kidney disease in his mid-50s during a bout of pneumonia, according to his wife Judy Rosenstein, 75. Until then, she says, “he never went to a doctor because he never really got sick.”

Know the treatment options

Treatment involves controlling the things that might make CKD worse, like high blood sugar levels and high blood pressure, and managing complications, like anemia and high levels of potassium and phosphorus in the blood. Treatment also aims to lower the risk of heart attack and stroke, which are strongly associated with kidney disease.

In addition, doctors have a growing list of medications that slow progression of the kidney damage itself.

“We have more tools available now than ever before,” Campbell says.

Those include drugs known as SGLT2 inhibitors, initially approved for type 2 diabetes. They are now approved by the Food and Drug Administration for certain people with CKD, including some without diabetes.

Studies suggest appropriate use of those drugs could delay the need for dialysis by 13 years in some patients, and “that’s amazing,” Campbell says.

But he and Kramer say few people who qualify are getting the SGLT2 inhibitors or other newer medications. “Caregivers can be advocates for getting those medications,” Kramer says.

If your loved one is not seeing a nephrologist, it’s worth asking their primary doctor whether a referral makes sense, Campbell says. Go with them to doctors if you can, he says, “to listen and fill in gaps and ask questions.”

Because there are rarely symptoms, patients sometimes “deny their kidney disease,” and don’t take the medications and make the lifestyle changes that could slow it down, Kramer says. Caregivers can help, she says, by encouraging loved ones to stick to treatment plans.

Support a kidney-friendly diet

At every stage of CKD, diet matters, says Melissa Prest, a registered dietitian who specializes in kidney disease and has practices in Chicago and Seattle. Early on, the biggest focus is on cutting excess sodium, she says, which contributes to high blood pressure and kidney damage.

“The thing people always say to me is, ‘Oh, I don't use a saltshaker,’” she says.  But she says most salt comes from restaurant meals and packaged foods. That means cutting salt often means cooking more at home, reading labels and searching for restaurant nutrition information online, she says.

As kidney disease progresses, other diet changes might be needed. In some cases, Prest says, doctors advise cutting back on potassium, which is in many fruits, vegetables and salt substitutes. Phosphorus, often used as a food additive, can also become a problem.

Protein recommendations can change over the course of kidney disease, she says, with patients urged to cut back as the disease progresses, but advised to eat more if they go on dialysis. At that point, she says, people often need protein supplements.

To sort through it all, it helps to see a registered dietitian, she says. If a caregiver is the family cook, it can be particularly valuable for them to come to those sessions, she adds. Medicare covers visits for many patients.

Judy Rosenstein says that when her husband’s kidney disease took a dramatic turn for the worse a few years after his diagnosis, “I don’t know what I would have done without the dietitians.” With their help, she says, she was able to help him stabilize his numbers enough to stay off dialysis for several more years.

Balance exercise and fatigue

Exercise also can help kidneys function longer, Kramer says.

But in advanced stages, having enough energy can be a problem, she says. “I have wives that say, ‘Why doesn't he get out and exercise? I’m always trying to push them to exercise,’ and I try to gently remind them that the most common symptom for advanced kidney disease is fatigue.”

Kramer says she often recommends afternoon naps. “It might even be good just to schedule it,” she says.

Know the options when kidneys fail

If your loved one has kidney failure, that means their kidneys function at 15 percent or less of the normal level, according to the National Institute of Diabetes and Digestive and Kidney Diseases. At that point, they have three options: dialysis, a kidney transplant or supportive care, for those who no longer want intensive interventions. 

Dialysis can take two forms: hemodialysis, in which a machine filters wastes and water from the blood, usually at a dialysis center, several days a week; or peritoneal dialysis, in which dialysis solution is pumped into the lining of the belly and emptied several times a day. Peritoneal dialysis is often done at home.

Either kind can demand a lot of caregivers — whether they are constantly driving someone to the dialysis center or helping them use and maintain dialysis equipment at home, Campbell says. So, caregivers should be part of discussions about which approach is best, he says.

Kramer says the best thing you can do for a loved one on dialysis is to avoid overly negative thinking. People often live for years on dialysis, she says: “They have lives, they eat dinner with their family. They watch television. They go to movie theaters.” It’s right to do everything you can to prevent the need, she says, “but when people do go on dialysis, it is not a death sentence.… It is a gift.”

Judy Rosenstein says when her husband eventually started peritoneal dialysis, the retired engineer largely managed the treatments himself.

Her biggest role by then, she says, was doing everything she could to help him find a kidney donor. She put up a Facebook page, distributed flyers, made appeals at synagogues, and once considered putting an electronic sign on the Staten Island Ferry. “I became obsessed,” she says.

Eventually, working with a nonprofit organization, “our miracle came through,” she says, with Abe getting a kidney from an unrelated donor in 2016.

It’s working beautifully today, she says.

Donna Tovalin’s 20-year-old kidney is working nicely too. She says her husband deserves a lot of the credit: “His love, patience and most importantly faith are the best daily medicine I could ask for.”