Kidney failure is likely to include some dialysis treatment, and this can be a major life adjustment for the patient and all caregivers.
“First of all, when we see patients, we try to make them fully aware that nobody likes dialysis,” said Dr. Leslie Spry, a spokesman for the National Kidney Foundation (www.kidney.org). “It’s not a very friendly option, but sometimes it is a necessary option.”
In the case of children and young adults, dialysis is a way to keep their bodies functioning until they can get a kidney transplant, which can take three to five years on a transplant list or less if they have a living donor. These patients are typically on peritoneal dialysis. With older adults in need of elder home care services, doctors more often use hemodialysis. Patients can receive both types of dialysis at home or in a center, but it must be done for a few hours at a time several times per week.
The reality is that the treatment possibly requires a caregiver to drive a person to and from dialysis multiple times per week. Each time that caregiver must wait for a few hours during the treatment. If it’s done at home, then the caregiver has to help the person getting dialysis with it many times per week. Even if someone is middle aged and can drive themselves to and from the treatment, Spry says dialysis can be a burden.
“All dialysis units have a social worker,” he explained. “The social worker becomes pivotal in evaluating these folks and assessing the psychological and overwhelming burden placed on caregivers.”
For those young and otherwise healthy enough, it is possible to continue to work, travel, and exercise even while undergoing dialysis.
“For someone who is 40 or 50 years old, it is a life interrupted,” Spry said.
He points out that hemodialysis is better for people who remain primarily at home for treatment, whereas peritoneal dialysis is easier for travel.
The National Kidney Foundation’s website (www.kidney.org) discusses many other concerns, including topics about sex, child bearing, physical appearance, how to talk to family members and who should take on caregiving responsibilities. One issue is to consider is whether or not dialysis is the best choice - especially for the very elderly and those with other chronic illnesses.
“If you are middle-aged and you have diabetes and need dialysis, your life expectancy is not so good,” Spry said.
Spry says the key for both dialysis patients and their caregivers is to have realistic expectations of what dialysis can do and what treatment is like.
“If someone burns out trying to be a caregiver to someone on dialysis, then they feel guilty, and the patient ends up in a nursing home and they feel angry that their spouse or whoever cannot take care of them,” he said. “Those folks with only the patient and the caregiver around are the worst case scenario [for dialysis].”
Because of the frequency of treatments and the possibility of treatment extending for years, Spry says families do best when supporting one another – even if it means someone moving back to their hometown to get dialysis.
Before starting dialysis treatment, experts recommend that people visit the facility where treatment may take place, talk with other patients and their families who already went through dialysis, make a list of questions and concerns about dialysis to discuss with your doctor, and know that it is normal to have fears and concerns about dialysis treatment.