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.
Receiving Treatment for Kidney Failure
What treatments are available for kidney
failure?
Three major types of treatment are available
for patients with kidney failure. They are haemodialysis, 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 continuous cycling peritoneal dialysis (CCPD), 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
haemodialysis 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.
- .
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 centres
is called urea reduction ration (URR). For haemodialysis 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 CCPD
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. .
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 travelling.
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
dieticians.
- 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
haemodialysis, peritoneal dialysis, and kidney transplant are
covered by the NHS in UK, but some people take private medical
insurance:
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
dietician who is specially trained to work with patients who have
kidney disease can be very helpful. The dietician will teach you how
you can still eat small amounts of restricted foods you like and how
to flavour foods with spices instead of salt.
Returning to Work and Other Activities
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 2005 (the Disability Discrimination
Act) prohibits discrimination because of disabilities. If you are
concerned about discrimination, contact an attorney, the Equality
and Human Rights Commission (EHRC) or the Department of Works and
Pension.
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 anaemia, 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, haemodialysis
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 travelling
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.
Sexuality and Having Children
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 haemodialysis, an access will be made
surgically (usually in the arm) to insert the haemodialysis 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 you
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, anaemia, 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 anaemia, 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.
Dealing With Emotions
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.
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 counsellor,
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 counselling 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 counselling. 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 counselling, 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 counsellor (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 behaviour 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.
When Young Adults have Kidney Disease
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.
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 many 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.
Family Issues
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
tan 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 behaviour. Generally, patients have
a greater feeling of self-worth when they take control of their own
behaviour. 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.
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See also in this A-Z guide:
- Sexuality and Chronic Kidney Disease
- Staying Fit With Kidney Disease
- Working With Kidney Disease: Rehabilitation
and Employment
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