Coping Effectively: A Guide for Patients and their Families

Although many medical advances have been made in the treatment of kidney and urinary tract disease, the emotional effects of kidney failure on patients and their families remain great because many areas of everyday living have to be changed.

What treatments are available for kidney failure?

Three major types of treatment are available for patients with kidney failure. They are hemodialysis, peritoneal dialysis and kidney transplantation.

• Hemodialysis may be done at a dialysis center or at home, and treatments usually take place three times a week.
• Peritoneal Dialysis may be done at home, at work, at school or wherever a clean, private space is available for bag exchanges. The two types of peritoneal dialysis are automated peritoneal dialysis (APD), which requires the use of a machine, and continuous ambulatory peritoneal dialysis (CAPD), which is machine-free.
• Kidney Transplants can come from living donors, who are usually family members, spouses or friends of the patient. Transplants can also come from people who died recently (non-living donors).
• You also have the right to choose not to start treatment if you feel the burdens of dialysis would outweigh the benefits for you.

It is important to remember that treatment does not cure kidney failure and that each type of treatment has its pros and cons. You and your family should explore each choice carefully with your doctor, transplant surgeon and other health care team members.

Taking a look at your lifestyle can help you decide which treatment is best for you. A treatment choice is not always final. For example, a patient who has decided that hemodialysis is the best choice may, at a later time, still consider peritoneal dialysis or a kidney transplant after talking to the doctor and other members of the health care team.

If you decide - with the help of your family and doctors - that a transplant is the best choice for you, you should be aware that a period of waiting will be necessary if the kidney is to come from a non-living donor. (See below*)

Occasionally, some patients choose to stop treatments once they have begun them. Patients who choose to stop dialysis do so knowing that without treatment, they will die.

Is it normal to have fears about beginning treatment?

Yes, almost all patients and their families have fears before starting treatment. Having concerns about how you will feel, whether the treatment will hurt, what the staff and other patients will think of you, and how long you can live with the disease is normal and expected.

The following steps can be helpful in dealing with these feelings:

• Ask the doctor for a referral to the dialysis unit where treatment will take place. Visiting the facility before you begin treatment can help make the dialysis machine and the treatment less frightening.
• If you are interested in a transplant, ask your doctor for a referral to a transplant center. Set up an appointment to visit with the staff.
• Make a list of questions to ask.
• Speak to other patients and families who have been through the same experience.
• Discuss all your concerns with the health care team at the facility.
• Call your local National Kidney Foundation affiliate for information and a list of the programs and services available.

Why is it important for me to get the right amount of treatment?

Dialysis treatment removes excess wastes and fluid from your blood. When you have enough treatment, your overall health will be better and you will have more energy to cope with the changes in your life. If you don't get the right amount of dialysis, these excess wastes and fluid are left in your blood, which can make you feel ill. In addition, studies have shown that receiving adequate dialysis treatment can help you live longer. Your dialysis center will test your blood to make sure enough wastes are removed. The main test used to measure your dialysis dose is called Kt/V (pronounced 'kay tee over vee'). Another test used by some centers is called urea reduction ration (URR). For hemodialysis patients, Kt/V should be at least 1.2 and URR should be at least 65 percent. For CAPD patients, weekly Kt/V should be at least 2.0 and for APD patients, weekly Kt/V should be at least 2.1.

Ask your dialysis care team what your numbers are. If your numbers are too low, ask what can be done to improve them. This information is based on the National Kidney Foundation's Kidney Disease Outcomes Quality Initiative (K/DOQI), a program developed to improve patient outcomes.

What are my responsibilities?

Understanding and taking charge of responsibilities are the first steps in adjusting to the treatment. Every patient should:

• Take part in decisions about type of treatment.
• Apply for funding to cover the medical expenses of treatment.
• Arrange transportation to the treatment center by car, bus, taxi, etc. The social worker at the dialysis center may be able to help by suggesting transportation sources for ambulatory patients and patients requiring wheel-chair transportation.
• Know and take medication as prescribed; inform the health care staff about any problems taking medicines or lack of funds to get them.
• Arrive on time for scheduled dialysis treatments.
• Follow the prescribed diet and fluid restrictions and tell the health care staff about any problems in following the diet.
• Make necessary arrangements for dialysis well in advance when traveling.

Learning that dialysis or a transplant will be needed can be overwhelming at first, but normal activities can be resumed slowly. Understanding your own needs and taking charge of health-related responsibilities can help you to feel more in control of your life. This is important in offsetting feelings of helplessness. Don't be afraid to seek assistance from family or friends; they want to help.

*How can I cope with the stress of waiting for a transplant?

In deciding to pursue transplantation, you have just made one of the most important decisions of your life. What happens next is one of the more difficult parts of a transplant - waiting for a suitable-matched donated kidney to become available. If you are fortunate enough to be receiving a transplant from a living donor, your wait will be relatively short. Those awaiting a cadaver donor have a longer wait, sometimes up to three years or longer, and there is no way of telling when a suitable donor will become available. During this waiting period, some people become fearful of the unknown. Here are some suggestions for turning this wait into a positive experience:

• Discuss your concerns openly with your dialysis caregivers — doctors, social workers, nurses and dietitians.
• Use the time to become informed about transplants by reading about the procedure and your care after the transplant.
• Ask to talk with people who have had kidney transplants — both successful and unsuccessful.
• If you are unable to work at your former job, ask your social worker about job retraining.
• If you did not complete high school, ask about help in obtaining your degree.
• Consider volunteering your time to worthwhile causes, such as programs to increase organ donation.
• Be sure to get regular exercise within your limitations.

Your main goals during the wait for a new kidney are to increase your knowledge about transplants and to maintain your physical health and activities.

To make sure that everything goes smoothly when the time comes for you to have the transplant, you should:

• Make sure the transplant center has your correct phone number and all other contact information and that all specimens needed for screening are sent to the tissue typing lab on time.
• Make necessary family arrangements for being away from home for a time when you have the transplant.
• Be prepared to get to the hospital in a timely fashion at any time of day or night when a suitable donor kidney becomes available.

How can I pay for my treatments?

Many of the costs associated with hemodialysis, peritoneal dialysis, and kidney transplant are covered by:

• Medicare
• Private health insurance
• TRICARE, formerly called CHAMPUS (if you are active in or retired from military service)
• Veteran's benefits
• State medical assistance
• State kidney patients (where available).

The financial counselor or social worker at your dialysis or transplant center can explain insurance coverage to you in more detail. You may also get additional information from the following sources:

• For information about Medicare eligibility and coverage, contact Social Security at 800 772-1213 or your local Social Security office to receive a handbook explaining Medicare coverage for dialysis and transplant services.
• For more information about TRICARE and veteran's benefits, contact your local Veterans Affairs office or check TRICARE's Web site at www.tricare.osd.mil.
• For more information about eligibility and benefits under state Medicaid, contact the state welfare department (Department of Social Services).
• For more information about your private health insurance, read your policy carefully and talk with your insurance agent or company benefits counselor about your benefits.
• If you are 65 or older, you may be able to get counseling about health insurance benefits at your local senior citizen's center.
• For more information about resources to help pay for medications not covered by Medicare or other health insurance, speak to your social worker. Many drug companies have programs to assist individuals who cannot afford to pay for their prescription medications.

How can patients cope with changes in medications and diet?

Taking all your medications and following the recommended diet and fluid restrictions are very important to your success on dialysis or with a transplant. For dialysis patients, failure to cooperate can lead to serious complications such as bone disease, heart attack, stroke and even death. For transplant recipients, it can lead to rejection of the new kidney. Remembering to take new medications can be hard. Medication reminders and pill boxes can help you to remember to take all your medications.

Eating less salt, watching foods high in potassium and phosphorus and limiting fluids can be frustrating. A dietitian who is specially trained to work with patients who have kidney disease can be very helpful. The dietitian will teach you how you can still eat small amounts of restricted foods you like and how to flavor foods with spices instead of salt.

Should patients with chronic kidney disease be encouraged to return to previous activities?

Absolutely! Although you should not return to activities until you are medically stable, plans to do so should be discussed early on with your doctor. Most likely, the doctor will be very encouraging. When patients and their families return to a more normal routine, they feel much more satisfied with their lives. They also suffer fewer emotional problems such as depression.

Although the need for worthwhile and stimulating activity is important, you and your family must approach these with flexibility and patience. The way you feel from day to day will be less predictable than before. Some activities may no longer be tolerated and others may need to be changed to another time.

Family members are encouraged to continue to pursue their own interests and activities. Giving up their time to meet the needs of their loved one who has a chronic illness often leads to feelings of resentment and can cause the patient to feel like a burden. It can also promote a "sick" role, which is not healthy for the patient or the family.

Can dialysis and transplant patients return to work?

Yes, with their doctor's permission, dialysis and transplant patients are encouraged to return to work. At first, working in addition to following an involved medical program can be tiring. Additional support and encouragement at home and from your health care team are important. Patients who are employed may want to consider taking sick leave or a brief leave of absence instead of giving up their jobs.

When attempting to return to work, you should keep several things in mind. Discuss your disease openly with your employer, to the extent that the disease could affect your ability to do the job. Answer any questions or concerns the employer may have. The employer should be informed that your doctor considers you medically stable to work. Your doctor can provide a letter for your employer stating that you are able to work and any limitations you may have. Special needs such as a change in work schedule should be discussed. If either you or your employer is still uncomfortable about the return to work, a trial period may be helpful, after which both can evaluate the situation.

In addition, dialysis patients receiving treatment in a unit or hospital should request a dialysis schedule that fits best with their work schedule. Many people who work prefer dialyzing at night because they sleep after dialysis and awake feeling refreshed. Most dialysis units will make it a priority to schedule employed patients on a convenient shift. If you are a CAPD patient, you should ask your employer for a clean, private place to do your CAPD exchanges.

If you receive Social Security Disability, the local Division of Vocational Rehabilitation Office may assist you in returning to a job or retraining you for another job. A pamphlet entitled Working with Kidney Disease: Rehabilitation and Employment is available from the National Kidney Foundation.

People facing dialysis treatment or a transplant may worry that their treatment could cause them to lose their job. A law passed in 1990 (the Americans with Disabilities Act) prohibits discrimination because of disabilities. If you are concerned about discrimination, contact an attorney, the Equal Employment Opportunity Commission (EEOC) or the Department of Labor. For information about filing a claim, call toll-free 800 669-EEOC.

Can I exercise?

Yes. An exercise program approved by the doctor can increase strength and endurance, prevent fatigue, reduce stress and depression and increase the overall quality of day-to-day living. Many patients with kidney failure report being unable to do as much physical activity as before. However, the use of EPO (erthropoetin), a medicine that corrects anemia, is improving the energy levels of these patients and, as a result, they are better able to start and continue a regular exercise program. Successful kidney transplants often increase patients' exercise tolerance to normal levels.

Before beginning an exercise program, it is important to consult your doctor and remember the difference between "doing" and "overdoing." An exercise program should be planned to meet your special needs. Exercising with a family member provides increased safety and companionship. A brochure entitled Staying Fit with Kidney Disease is available from the National Kidney Foundation.

Can I travel?

Yes. Travel for kidney patients requires advance planning, but it can be done. In fact, the ability to travel can be an important part of rehabilitation and a satisfying quality of life.

• When planning a trip, hemodialysis patients should make arrangements well in advance with a dialysis unit in the area to be visited (at least four to six weeks in advance, or more during popular touring seasons). Dialysis units are full and may not be able to accommodate unscheduled patients. Friends or family who live in that area can assist you in finding the nearest units by calling their local hospital or the National Kidney Foundation. A staff member in your local unit may be able to assist with dialysis travel arrangements, but generally, the initial contact is the responsibility of the patient or a family member.
• In making the arrangements, the dialysis unit will probably request medical information from your local unit. At the same time, information about method of payment will be requested. Many dialysis units bill Medicare for the traveling patient. Usually, the patient must pay the 20 percent balance and wait for any insurance reimbursement. It is important to check with the person who handles the unit's billing about the amount owed. In many dialysis units, doctors' fees are separate and may or may not be billed to Medicare and/or other insurance.
• Peritoneal dialysis (PD) patients will need to make plans for back-up medical care if they are going to be out of town for any length of time. The PD nurse or doctor can provide a referral to a transient PD program and make sure the appropriate records are sent. The financial arrangements should be discussed with both units, as the methods of payment for PD services differ.
• If you are on a transplant waiting list, notify the staff about how they can reach you at all times. You can also change your status to "on hold" until you return.
• Make sure to bring enough of your medicine along. Not all drug stores where you travel may have your needed medicines.
• Travel agencies that make reservations for cruises for dialysis patients are also available. It is important to reserve in advance because of the limited numbers of openings. Patients should check with their insurance companies about coverage for dialysis on cruises. Medicare does not cover treatments outside the United State in most cases. For more information, see the National Kidney Foundation booklet Travel Tips for Kidney Patients.

What kinds of changes in physical appearance may occur?

Changes in physical appearance due to chronic kidney disease vary from person to person. Sometimes your skin may become paler or slightly yellow. Some patients may want to use cosmetics to change their skin tone. The skin may become dry and flaky and produce an "ashy" appearance on darker skin tones. It is important to bathe daily and keep skin well-moisturized. Changes may occur in body weight, due to fluid loss or retention or some transplant medicines. You may also notice a changed taste in your mouth and a different smell to your breath. This is due to the buildup in the body of waste materials that are normally removed by the kidneys. Good mouth care can help. Brush your teeth, gums and tongue several times a day. Having dental checkups twice a year is recommended.

In hemodialysis, an access will be made surgically (usually in the arm) to insert the hemodialysis needles. This will appear as a large vein under the skin. However, the arm access does not appear as tubes or "plugs" sticking out of your skin. The skin near the site will become tougher due to the scar tissue that forms from the needle sticks. There will be a slight vibration felt instead of a pulse at the access site. In some cases, when blood vessels in the arm can't be used to make the access, a catheter is inserted into a blood vessel in your chest. This catheter can be hidden by clothing.

For peritoneal dialysis, a catheter will be placed in your abdomen so that exchanges of cleansing fluid (dialysate) can be done. This tube is visible but can be hidden easily with clothing. As with any changes in appearance, you will feel more comfortable once you become used to them.

After a transplant, the anti-rejection drugs can have certain effects on physical appearance. These may include temporary puffiness of face and neck, acne (pimples) and weight gain. Also, there will be a scar in the lower abdomen where the new kidney is placed.

Can patients with chronic kidney disease still enjoy sexual relations?

As with other chronic illnesses, the desire for sexual activity may change with the onset of kidney failure. This varies from one patient to another. Don't be surprised if your interest in social activity is lower. At first, a lot of your energy will be needed for the physical and emotional adjustment to your illness. Impotence, the inability for a man to have or maintain an erection, is common in kidney failure. This may be due to medical causes, such as medicines the patient is taking, anemia, or buildup of toxic wastes in the blood, which may not all be removed by dialysis. Emotional reasons, such as depression, fear of disability or death, or marital problems, can also affect sexual functioning. Couples who find that their sex lives are changing as a result of one partner's kidney failure should talk about the problem with the doctor or social worker because many of these problems can be treated.

While some men and women with kidney failure continue to have sexual problems, many transplant recipients become more active sexually and have fewer sexual problems as their new kidney continues to function. For additional information, see the National Kidney Foundation brochure Sexuality and Chronic Kidney Disease.

Can men with chronic kidney disease still father children?

Men with chronic kidney failure have been known to have less chance of fathering a child. This is due to a lowered fertility or even infertility. Individual cases can be pursued with a doctor. The risk of having a child with birth defects is not increased.

Can a woman who is on dialysis have a baby?

Women with kidney failure, whether or not they have begun dialysis, are usually advised against becoming pregnant. The rate of complications and the risk to both the developing baby and the mother are high. It is important to consult a doctor for further information and advice and to consider birth control. The use of EPO, a special medicine that corrects anemia, may increase the chance of becoming pregnant.

Can a woman who has a transplant have a baby?

Yes. A woman who has had a kidney transplant usually has more regular periods and better general health. Therefore, it is easier for her to get pregnant and have a child. However, pregnancy is not recommended for at least one year after the transplant, even with stable kidney function. In some cases, pregnancy is not recommended because of risk to the mother's life or possible loss of the transplant.

What can patients and their families do about feelings of depression and anxiety?

These feelings are very common. One of the most helpful things you can do is talk about them. Feelings are real and need to be shared. You may have been taught that it is "weak" to cry, but many times that is exactly what you need to do. You and your family will have more difficulty adapting to kidney failure if you hold the sadness and anxiety inside. Other patients can be a good source of support and inspiration. Ask your treatment team or your NKF affiliate for the names of patients you can talk to.

Even the closest family members do not have the ability to read your mind. Expressing your needs is healthy. With the stress of kidney disease, it is important to maintain a sense of warmth and closeness with family and friends. Expressing feelings openly and honestly is important to your family's health and emotional well-being. However, it is important not to make your family members feel guilty about your illness or to take out your anger about your illness on them.

Patients may feel they are a burden to their family. It is important to realize that kidney failure does not happen just to individuals - it happens to families. Sharing your thoughts and feelings freely in an honest, respectful manner can help you and your family. This includes the negative feelings of sadness, anger, fear and resentment. Holding these thoughts and feelings inside results in emotional distance between family members.

A recent PCORI-funded study looked at how well two treatments for depression - talk therapy and an antidepressant - work for people on dialysis. Learn more here.

How can patients and their families deal with the stress of chronic kidney disease?

It is important to realize that the stresses and frustrations of kidney failure are real and at times very difficult. Family members may feel as though their world is caving in, especially if they have not faced a major crisis before and the diagnosis was unexpected. They may feel helpless because they cannot do anything about the illness. They may be angry that kidney disease has happened to "their" family. They may fear that the patient may die. They may feel guilty if they did not realize the serious nature of the illness.

A period of confusion and tension may occur as everyone tries to cope with the demands of the illness, the anxiety of treatment, the disruption of everyday life and the sudden "scrutiny" of the health care system. Kidney failure requires changes in lifestyle. Routine chores and activities that require physical strength may be difficult to perform now. Family members or friends may have to take on added responsibilities.

Eventually, family life may return to near-normal, with treatment included as more or less routine.

The following steps can help to lessen the stress:

• Talk to the staff at the dialysis unit or transplant clinic.
• Write down questions ahead of time and inform family members about changes in treatment.
• Find out as much as possible about the illness through the National Kidney Foundation, local or national support groups, written materials and educational classes.
• Keep involved in the pleasures, activities and responsibilities of daily living.
• Find time to exercise at a level to suit your individual limits.
• Share your feelings with family or close friends.
• Share your feelings with other patients.
• Seek help from the social worker at the dialysis unit or transplant clinic or from an outside counselor, if family or personal problems need further attention.
• Find time to enjoy the outdoors.
• Try to keep your previous goals and arrange your treatment around your goals.
• Be patient and set realistic goals in adjusting to all lifestyle changes.

Is it normal for dialysis patients to feel upset at times with the staff at the dialysis unit?

Yes. A dialysis unit is different from any other health care setting. The unit almost becomes a "second family" because of the amount of time you spend there. The staff genuinely cares about your health and well-being. However, just as it is with family members, it is normal to feel frustrated and angry at them sometimes. Resentment caused by being dependent on other people is the most common cause for these feelings. It is important that you discuss your concerns with the staff in a respectful way. Keeping resentment bottled up inside can affect your treatment, health and adjustment.

When should professional counseling be sought?

Life with kidney disease and its treatment can be upsetting, particularly in the early weeks and months. Most patients and families go through a period of grieving as they try to adjust to complex feelings and make needed changes. Many people wonder if they will be able to cope well enough and whether their feelings are "normal." Most people go through a crisis period at the beginning, but with the support of family, friends, medical staff and other patients, they eventually adjust to life with kidney disease.

Dialysis units and transplant facilities have professionally trained clinical social workers who are available to provide adjustment counseling. Generally, the following may indicate a need for professional help:

• Depression lasting more than two weeks
• Thoughts about suicide
• Loss of appetite or increased appetite
• Too much or too little sleep
• Loss of interest in activities you used to enjoy
• Repeated angry outbursts
• Drug or alcohol abuse
• Inability to make decisions
• Social isolation.

Through counseling, patients and families can learn to draw on inner strengths and learn new ways of coping with kidney disease and necessary treatment. If additional professional help is needed beyond what can be provided by the facility social worker, ask for a referral to your local mental health center or private practice counselor (psychiatrist, psychologist or social worker). Remember, asking for help is not a sign of weakness, but of your desire to do well.

Is it normal for kidney patients to have mood swings?

Moodiness is common among kidney patients. It is often thought to be a result of the following factors:

• Uremia, or the buildup of waste products in the blood, can be irritating to the nervous system, causing an increase in irritability mostly in the early stages.
• Some medications may cause moodiness or make you seem depressed.
• The stress caused by chronic illness accounts for a wide range of feelings and moods. This includes general irritability, anger and frustration over the problems caused by the illness, and feelings of being hopeless and helpless when faced with a life-threatening disease.

How can a spouse handle these changes?

Someone whose husband or wife has always been easy-going and pleasant may find these kind of mood changes upsetting. If a new medication was added, or if a medication was increased before the change in mood occurred, notify the doctor. Understanding that irritability and moodiness may be part of the experience of kidney disease can help the spouse to accept these changes. It may be helpful to talk openly and honestly or remind the patient that this behavior affects others. It is also important to discuss ways to relax when tensions are high. Having a friend or family member to confide in can be helpful to the spouse.

How can teenagers with kidney failure handle fears about what friends and schoolmates will think of them?

Teenagers are concerned about how to tell their friends about their disease and how their friends will react. Often, schoolmates will notice the graft or fistula in the patient's arm and ask about it. Friends may wonder why the patient has to go to the hospital or clinic several times a week, instead of being with them. However, teenagers may have some knowledge about dialysis and transplants. They may have seen TV programs about kidney failure or transplants.

Teenagers who have difficulty telling others about this medical problem may not have worked out their own feelings about the illness. Talking with the social worker in the dialysis unit or transplant clinic may help them to work through these feelings. Also, talking to other teenagers with kidney disease about how they deal with things may help. The key is feeling secure and comfortable with themselves; then telling other people becomes easier.

Do many teenagers who have chronic kidney disease feel that their plans for the future are over?

Yes. Most teenagers (and even adults) who have kidney failure feel this way. Having kidney disease affects an individual's life, but the future is far from over. Starting dialysis treatments or having a transplant, following a special diet, and taking medicines are big changes. A kidney transplant may make extra medical visits necessary. Most young people worry about being able to continue with school, earning a living, getting married or having meaningful relationships.

However, many dialysis and transplant patients have completed school and started successful careers. Talking to the social worker at the dialysis unit or transplant clinic about these concerns may be helpful. Other teenagers with kidney failure would be happy to discuss how they cope with setbacks.

Summer camp is a great place to meet other young people with kidney failure. The National Kidney Foundation or a social worker can provide information about the many summer camps available for kidney patients throughout the country.

Another publication available from the National Kidney Foundation, specifically for teenagers, is It's Just a Part of My Life: A Guide for Young Adults with Chronic Kidney Failure.

Can a youngster who has kidney failure safely take part in active sports?

A youngster who is feeling well and enjoys active sports does not want to feel overly protected. Parents may find it difficult to know how far to let their child venture. Talking this over with the doctor will help parents learn whether they are making a decision from a medical or emotional standpoint. Often, a doctor's advice will be based on the type of physical activity (e.g., horseback riding, football).

Holding the reins too tightly may make the child angry, rebellious and resentful. It is important to try to maintain a healthy balance between common sense and concern over the child's health and well-being. As time passes and the parents see that their child continues to feel better, they may feel more comfortable with their decisions.

How can a parent handle having to make difficult medical decisions for a child who has chronic kidney disease?

Parents do not have to make decisions about medical care alone. A team of health care professionals is there to help make these decisions, based on the most up-to-date information. The choices are not always easy, and no one can predict the future. Parents always wonder whether they are doing the right thing. It is important to remember that there are no right or wrong answers. Parents must take comfort in making the best decision possible along with the health care team members. Talking this issue over with other parents of children with chronic kidney disease is helpful.

How can the parents of a child who has kidney disease handle discipline?

All parents worry about how best to raise their children. When a child has a chronic illness, this issue becomes even more difficult. Giving in to the child's every whim, or not expecting the child to have any responsibilities in the home, can often create short-term as well as long-term problems. Children need limit-setting, even though they may argue and become angry. Parents who give in all the time may be creating a demanding, spoiled and undisciplined child. Disciplining a child who has kidney failure is not an easy task for parents. Although parents feel worried and protective, they must consider the child's development, and think in terms of trying to maintain as normal a home environment as possible. Other children in the family will notice and be affected by how the child with kidney failure is treated.

Talking with other parents who are in a similar situation is helpful. Becoming involved in a parent support group might help lessen anxieties and concerns. One of the most important things to keep in mind is that there are no right or wrong answers. Parents should remember that they are doing the best they can.

How should parents talk to their child about the death of a close friend in the dialysis unit?

Most people are naturally uncomfortable in this situation, which fortunately, is not common. Talk with the social worker and nurse at the unit to see how they handled telling the other children. Parents should not deny the event for fear of making their child more afraid or unhappy. Although the child may not mention the death, it has not been forgotten; the child may be waiting for you to start the discussion. Generally, children can express their feelings if given the chance. It is important to allow enough time, as one discussion is generally not enough. Parents should be aware of their own feelings about this loss.

Anyone involved with the child who died will feel upset and will need to talk. Communication should be kept open with your child and with the staff. You and your child may need to talk with the social worker if your child's sadness or fears become too hard for you to handle alone. If you are concerned about how your own child is doing medically, you should seek assurance from your doctor.

How should parents explain kidney disease?

A parent's kidney disease can affect his or her children's lives. Discussing the illness and treatment openly with the children, at a level they can understand, can help prevent them from developing fears and misconceptions. Children may dwell on "terrible" things they have done or said and blame themselves for their parent's illness, which can cause problems in the future.

Often, children may begin to behave differently after the parent is diagnosed with kidney failure. Sometimes, they begin to act like "little adults" or "perfect angels." Other times, they begin to misbehave and have problems in school. These are ways children cope with a parent's illness and their fears about that illness. A parent who feels unable to talk to the child should speak with a social worker at the dialysis unit or transplant clinic. The social worker may be able to help both parent and child learn how to talk openly about the treatment and fears related to it. The social worker may refer the family to a family therapist or the child to a child therapist.

Can the responsibility of helping a parent who has chronic kidney disease be harmful for a young child or teenager?

Although children or teenagers may be glad to help a parent who is learning to adjust to life with a chronic illness (and sometimes with an associated disability), this can cause problems in the long run. The youngster may begin to feel responsible for the parent, leading to a reversal of the usual parent-child roles. When the parent has problems, the child feels at fault.

In growing up, a child must learn to separate from the parent. This becomes a difficult task in situations where the parent has a chronic illness because the child may feel he or she is shirking the duty to help. In some cases, the child may rebel against the illness entirely, causing severe family problems. Rather than overburden a child, the parent should seek help from a friend of community agency. Public health and social welfare agencies as well as local health agencies may be able to provide help with personal care and housework. This allows the child to grow up normally with the parent still in charge and in the parent role.

What is the best way to help an elderly parent who has chronic kidney disease?

The experience of having an older parent with chronic illness can be difficult. A person who has been independent may find it difficult to accept declining health. However, some people may be quite capable of being independent while on dialysis, and their adult children may be offering help before it is needed. In many families, a slow role-reversal occurs as aging parents become more feeble and dependent. Treating them with dignity and respect while, at the same time, taking more responsibility for their care, requires a delicate balance of patience, sensitivity and frankness.

Often one of the adult children becomes the primary caregiver of the parents, either by proximity or a choice to have the parent move in. This can be a burden if the other siblings are not a source of support and help with at least some aspects of the care provided.

Having everyone in the family talk about what is happening can be helpful. A social worker may help facilitate a family meeting if family members have a hard time talking together. The ideal situation is having the family pool all its resources, rather than for one person to carry the load. Joint planning for everyday needs such as cooking, cleaning, transportation and paying bills helps to ensure wise use of family resources.

Adult children can help by going to meetings at the dialysis clinic, learning about kidney disease and its treatment and allowing the parent to talk freely about concerns. They can also help the parent in dealing with the confusing number of agencies, interviews and medical regimens. They should also encourage the parent to continue with as many normal activities as possible, such as church attendance, senior citizen programs, hobbies, travel and visiting with family and friends.

What should the family do if the patient is not following medication and diet guidelines?

Families often confuse love with taking care of the patient. Even with the best of intentions, they can keep the patient in the "sick-dependent" role by taking too much responsibility for the patient's behavior. Generally, patients have a greater feeling of self-worth when they take control of their own behavior. The following suggestions can help to avoid this problem:

• Family and staff need to realize that the patient has the illness as well as control over intake of food, fluids and medication. No one else can assume this control.
• In many cases, the patient will begin to comply if the family clearly states concerns and limits of responsibility and then backs off.
• Being a good caregiver is viewed as loving. However, struggles with the patient over diet, fluids and medicines are often mixed with needs for power and control; feeling responsible and "better than" the patient. This, in turn, makes the patient angry and even less cooperative.
• Family members need to make sure that they are not making it more difficult for the patient to stick to the treatment by offering food or liquid not included on the diet.

For information on treatment choices:

• Choosing a Treatment for Kidney Failure
• Kidney Transplant: A New Lease on Life
• Dialysis: Choosing Not to Start
• Dialysis: Deciding to Stop

For information on rehabilitation:

• Sexuality and Chronic Kidney Disease
• Staying Fit with Kidney Disease
• Working With Kidney Disease: Rehabilitation and Employment
• Choosing a Treatment for Kidney Failure
• For the New Hemodialysis Patient
• For the New Peritoneal Dialysis Patient
• Nutrition and Kidney Disease
• Considering a Transplant
• About Organ Donation and Transplantation
• Kids and Kidney Disease

If you would like more information, please contact us.

© 2015 National Kidney Foundation. All rights reserved. This material does not constitute medical advice. It is intended for informational purposes only. Please consult a physician for specific treatment recommendations.