Thursday, June 30, 2016

How can we protect our family financially while being faced with expensive treatments for cancer?

76. How can we protect our family
financially while being faced with expensive
treatments for cancer?



One of the primary causes of stress among
people with cancer and their families is coping with
the possible financial issues.



Mark’s comment:

First of all, you’ll need to take a serious look at your
finances. If you’re self-employed as I was when my mother
was sick, find a lawyer and discuss options, such as forming
a corporation to limit personal financial liability. Figure
out as many tax shelters as possible. Think about limiting
the number of business associates you tell about your loved
one’s cancer—potential clients or partners may assume that
you’re going to be too busy helping the person with cancer to
take on work, and then your business will decline just
when you need the income most.

Then . . . just be a grownup about it, which is harder than
it sounds if you’re caring for someone. Yes, a certain amount
of emotional turmoil is to be expected, but the point is that
you and your loved one can’t allow the cancer to rule your
life. You still have to earn money, you still have to live your
life, and the dishes don’t wash themselves.

One of the primary causes of stress among people
with cancer and their families is coping with the possible
financial issues. Financial concerns primarily
stem from two sources: (1) the cost of medical care
and level of insurance coverage, and (2) the loss of
wages caused by temporary or permanent job loss.

There are several ways to help reduce the financial
impact, including knowing what the person with cancer
can do to protect him or herself and knowing
about possible government and private financial assistance.

However, this topic is complex and varies by geographic
region and by individual concerns and situations.

Consult a social worker, along with a lawyer or financial
planner, to obtain specific information. The following
information serves as a guide to help you ask the right
questions.

The doctors want my husband to get radiation therapy for the next six weeks, five days a week. I don’t drive, and I’m afraid my husband won’t feel well enough after his treatments to drive himself.How is he going to get back and forth for his treatments?

75. The doctors want my husband to get
radiation therapy for the next six weeks,
five days a week. I don’t drive, and I’m afraid
my husband won’t feel well enough after his
treatments to drive himself.How is he going
to get back and forth for his treatments?


Insurance policies seldom cover the cost of transportation
to and from routine medical appointments, but
check his insurance plan anyway, just to be sure. If your
husband is being treated at a major cancer center at
some distance from where you live, you can ask the
doctors at the center if there are other medical centers
closer to your home where your husband can receive
the same treatments. This will make arranging a transportation
schedule easier with the assistance of family
and friends who might be able to provide rides for
your husband to his appointments.

Sometimes help from friends and family is not enough;
you may need to explore other options. One is to pay
privately for car service or an ambulette, if you have the
financial resources. Hospitals close to home may provide
free or low-cost transport services to and from medical
treatments, such as radiation therapy or chemotherapy.
Financial assistance is also sometimes available from
local chapters of national cancer support organizations,
such as CancerCare, Inc., and the American Cancer
Society, if you can demonstrate financial need.


Ambulette = A transport service for patients, usually a 
van that can accommodate patients in wheelchairs.


Another option is to look into public and nonprofit
transportation programs for the disabled or aged, if
your husband qualifies. Most communities, for example,
have paratransit programs to complement the
local public transportation system. If you are unable to
use public transportation because of a physical impairment
or medical condition, paratransit may be available
to take you door-to-door to your desired
destination for the same cost as taking a bus. Advance
reservations are required, however; contact your state
or local Department of Transportation for details
about their program and how to apply for service.


Paratransit program = A local public transport 
system for those with a physical impairment
or medical condition.


Similarly, there may be van service available for senior
citizens in your community, sponsored by the government
or by community organizations such as churches
and voluntary charities, to help you get back and forth
between home and the hospital or clinic.

Another problem that can arise, even when patients or
family are able to drive, is the availability and cost of
parking. A handicapped parking permit, available
through your local municipality, may help. You don’t
need to be wheelchair bound to qualify, but usually a
letter from a physician is required. The cost of parking
in a parking garage per visit can also quickly add up
over time, so if you and your husband are on a fixed
income with limited resources, ask the social worker at
the hospital or clinic where you are being treated
whether there are any philanthropic programs or parking
vouchers available either through their institution
or organizations like CancerCare, Inc., that might be
able to provide financial assistance.

What is a skilled nursing facility? How does my father get into one?

74.What is a skilled nursing facility? How
does my father get into one?



Unlike nursing homes, short-term rehabilitation
in an SNF (skill nursing facility) is a stepping stone,
a structured setting of care to help patients go home.



Skilled nursing facilities (or SNFs) are often confused
with nursing homes, both by patients and their families.
SNFs provide a higher level of shorter-term care
that aims at having patients return home or to a family
member’s home. Nursing homes, on the other hand,
provide primarily long-term, custodial care for patients
who can no longer live elsewhere on their own.

Although many SNFs began as nursing homes, or
have units in them that provide long-term care, they
also house rehabilitation units where patients can stay
temporarily to receive physical and occupational therapy
until they have regained a level of functioning that
allows them to go home. Unlike nursing homes, shortterm
rehabilitation in an SNF is a stepping stone, a
structured setting of care to help patients go home.

Once you’ve begun the process of considering having
your father go to an SNF for short-term rehabilitation,
the hospital discharge planner should be able to provide
you and your father with a list of local facilities.

The discharge planner at the hospital will probably
have brochures or even videos on hand to provide you
with some background about these places. If you or
your father is interested about the type of care provided
at an SNF, you can contact the admission office of any
facility you are considering and arrange a tour.

Your father doesn’t necessarily have to go to an SNF in
the town where he lives. If it’s more convenient, he can
go to a facility closer to you in order to make it easier for
you or other family members to visit him, provided there
aren’t any restrictions based upon his insurance. If you
know of any facilities from previous experience or have
friends who can make recommendations about places, so
much the better. Try to identify about five facilities as
potential placements for your father, as your first choice
may be full or won’t accept your father because they can’t
meet his medical needs. Consult with the hospital discharge
planner so that he or she can put in the necessary
paperwork for application to these facilities.
If your father participates in a managed care plan (see
Part 7 for insurance information), remember that these
care facilities may have to be in-network to be covered
by insurance. Most SNFs accept Medicare, but Medicare
will cover only the first 20 days of a stay at an SNF.
After that, there is a co-payment ($133.50 per day for
the year 2009) for days 21 through 100, after which
patients are financially responsible for the costs of their
stay. For this reason, some facilities require some kind of
financial review as part of the application, in case the
patient stays at the SNF longer than anticipated.
Once your father is medically cleared and ready for
transfer to an SNF, hopefully you will have already visited
your five choices and decided upon your preferences.

Sometimes, though, your first choice for placement does
not have a bed available, even though they’ve medically
accepted the patient. If you’re comfortable going with a
second choice facility that does have a bed ready, fine;
keep in mind also that it’s always possible to transfer
later to another facility if the care provided is not adequate.

If there are facilities willing and able to accept
your father, but you or your father insists on one in particular,
his health insurer may inform you that it will no
longer pay for his current hospitalization while waiting
for a bed at your first choice SNF. Things don’t often
reach this impasse as long as you’ve been working in
conjunction with the medical team and discharge planner
and have made a good faith effort to look at
options and consider alternatives.

Another obstacle that can arise is when the SNFs
refuse to accept a patient on medical grounds, either
because the patient is too high-functioning to require
rehabilitation in a facility or has other nursing care
needs that the facility is unable to provide. In the latter
case, you need to go back to the discharge planner to
find other facilities capable of providing the specialized
care your father needs. If, on the other hand, your
father is now getting out of bed independently, walking
without assistance, and meeting other goals, SNF
placement may, in fact, not be needed, and going home
may be the appropriate plan.

My mother can barely get out of bed to go to the bathroom. Even though we’ve hired an aide to help her at home during part of the day, I’m really concerned about her safety when she’s alone.What should we do?

73. My mother can barely get out of bed to go
to the bathroom. Even though we’ve hired an
aide to help her at home during part of the
day, I’m really concerned about her safety
when she’s alone.What should we do?



Nancy’s comment:

If you’re caring for someone who doesn’t live with you, it
can be helpful to have an occupational therapist (OT)
make a home visit to the patient’s house to evaluate the
patient’s needs for safety and mobility. This may be covered
by insurance. An OT can suggest placement of grab bars in
a bathroom, a ramp rather than steps for easier access, and
other safety and comfort measures, which can make a great
difference in how the person you’re caring for can manage
when he or she is alone. Just improving a person’s mobility
can buoy his or her spirits and speed recovery from a difficult
round of chemotherapy or radiation treatment.

There are times when people are unable to manage
alone, either because of physical limitations, mental
impairment, or both. Decisions about how to handle
this involve both practical and emotional considerations.

Ask yourself: Is the impairment temporary or
treatable? Or is the impairment long-term and not
likely to improve? If your mother has recently been in
the hospital for a couple of weeks or longer, it may not
necessarily be the cancer that leaves her unable to care
for herself, but rather the weakening and deconditioning
of the body that occurs when people are inactive
for prolonged periods of time.

In either case, talk with the doctor to see what she
thinks is contributing to your mother’s physical condition.
Ask her about having a physical therapy evaluation.

A physical therapist and physiatrist will both
assess your mother’s ability to manage safely at home
and suggest a program for her rehabilitation. Similarly,
if your mother just had surgery and seems confused or
“just not herself,” it could be a temporary side effect of
the anesthesia or other medications. If this continues,
do not be surprised if the physician wishes to consult
with doctors from other specialties to discuss possible
solutions.


Physiatrist = A doctor who specializes in rehabilitation
medicine.


If your mother is currently admitted to the hospital, it
may be that after a few days of physical therapy, your
mother will be able to return home directly and be able
to manage with support from family members staying
with her. A physical therapist may be able to visit her
at home to help her get back her strength, and a home
health aide may be included in these services to help
your mother get back on her feet again. With this
assessment and assistance at home added to what
you’ve already arranged, your mother may be able to
manage well out of the hospital.

Although you may still be uncomfortable with the idea
of your mother going home, it’s important that you take
into account how she perceives her care needs, before
imposing any plans or solutions. If she feels she can
manage at home with the help of an aide, or even by
herself, you can voice your concerns and discuss with
her additional ways of ensuring her comfort and safety:
having more family involved; hiring additional help privately;
or installing a Personal Emergency Response
System (PERS), which she can wear on her person so
that she can call for immediate help in a crisis.


Personal Emergency Response System (PERS)
A device that a patient can wear that can 
alert emergency help.


On the other hand, it may be that your mother does
require a longer or more intensive program of physical
therapy to get better, or simply needs more help than
can be provided at home. In this case, your mother can
transfer from the hospital to a skilled nursing facility
for rehabilitation (see the next question), where she
can receive both nursing and personal care around the
clock, in addition to participating in a daily program of
physical therapy.


Skilled nursing facility = A healthcare facility providing 
short-term nursing care with the aim of having the
patient return home or to a family member’s home.


Can we get a hospital bed for my husband when he returns home from the hospital?

72. Can we get a hospital bed for my husband
when he returns home from the hospital?



Durable medical equipment (sometimes referred to as
“DME”), such as walkers, wheelchairs, bedside commodes,
or hospital beds, can be obtained for long-term
or short-term use from equipment suppliers. Medical
equipment can be delivered to patients’ homes while
they are still in the hospital or after they are discharged.


Durable medical equipment = Equipment such as walkers, 
wheelchairs, bedside commodes, or hospital beds that
can be ordered from equipment suppliers for home use.


Check first with the medical team, however, to make
sure they agree that the equipment is necessary and
appropriate. You will need a doctor’s certification of the
medical need for the equipment in order to get
approval from the insurance company (assuming, of
course, that your policy covers durable medical equipment
in the first place) or to authorize payment to the
equipment company through Medicare or Medicaid.


Medicare = A federally run health insurance program for
those aged 65 years or more, or those on Social Security
Disability, who are legally blind, or on renal dialysis.


Medicaid =  A federal- and statefunded health insurance
program for those on a limited income.


Although there may be other paperwork, usually what’s
required is a written prescription from the doctor for
equipment, much the same as for prescription drugs.

The next step in the process is to have the discharge
planner in the hospital (the social worker or nurse case
manager) forward the prescriptions to an equipment
supply company, who will then make arrangements with
you for delivery. If there are items you desire but are not
covered, you can always buy or rent them yourself.

Patients who have already been discharged home and
afterwards find that they need equipment to help facilitate
their care can contact their home care company
if they are currently receiving nursing visits. They
may be able to have the equipment delivered to the
patient’s home. Or, you should contact the doctor’s
office. The physician can provide you with a prescription
if the patient needs the equipment for medical
reasons. You can then take this prescription to an
equipment supply company.

My husband just had colon surgery, and we were just told by the doctor that he no longer needs to stay in the hospital.Are we really going to be able to manage his care at home?

71. My husband just had colon surgery, and we
were just told by the doctor that he no longer
needs to stay in the hospital.Are we really
going to be able to manage his care at home?



With training and reinforcement from inpatient staff
and/or visiting nurses, patients and their family caregivers
can learn to do injections, manage the intravenous
infusion of fluids, and operate feeding tubes or drains
on their own.



Nancy’s comment:

A visiting nurse can show the caregiver and family simple
nursing skills that they can use when home healthcare persons
aren’t present. These include using a draw sheet to
move a patient in bed, how to pick up someone who has
fallen, helping the patient with a bed bath, or how to give
a massage. It’s important to know how to do these things
properly, particularly if you’re caring for an elderly person
or someone who is physically frail.

In recent years, hospital admissions have gotten
shorter, in part because patients can now be sent home
to manage their care themselves. With training and
reinforcement from inpatient staff and/or visiting
nurses, patients and their family caregivers can learn to
do injections, manage the intravenous infusion of fluids,
and operate feeding tubes or drains on their own.

Sometimes this is for a short time, until the problem
resolves and the patient no longer requires the treatment
or care. Sometimes, when there are permanent
physical changes, as in the creation of a colostomy that
diverts solid waste through a surgically created opening
in the abdomen, the care regimen can be permanent.

Take steps right from the beginning to prevent yourself
from becoming overwhelmed. For example, meet with
the nurses and physicians in charge of your husband’s
care as soon as possible during his hospitalization
and establish realistic goals. Keep in mind that your
husband’s psychological and physical adjustment to
surgery—and your adjustment as a caregiving partner—
are not going to occur overnight. Pace yourself. If your
husband has the medical need, he will most likely have
a home care nurse visit, and possibly other care services,
after he is discharged from the hospital to provide
additional instruction and support. Furthermore, community
support groups such as the American Cancer
Society (ACS) and other agencies can help you and
your spouse adjust to body changes after surgery and
other treatments.

It’s not uncommon for patients and family caregivers
to be anxious prior to discharge from the hospital.

They are losing the emotional safety net of round-theclock
care from doctors and nurses. Going home and
assuming responsibility for your loved one’s care will
be less intimidating if you focus on getting answers to
the following questions before you leave the hospital.

If a nurse’s visit at home has been arranged, it pays to
go over the following questions with the nurse again:

• What can I expect at home?
• What will I have to do?
• What are the potential problems that could arise?
What are the warning signs?
• When should I seek professional help, and whom do
I call?

These questions are based on a problem-solving
approach advocated by American Cancer Society in
one of their publications, Caregiving: A Step-by-Step
Resource for Caring for the Person with Cancer at Home
(2000). This book, which we highly recommend, also
has numerous chapters devoted to physical conditions
(such as pain, fever, and diarrhea) that might occur at
home and explains how to manage them.

What is home care? What can we expect from home care after surgery and during other treatments?

70. What is home care? What can we expect
from home care after surgery and during
other treatments?



Home care is a broad term used to describe many types
of medical and/or personal care services provided in a
person’s home. Multiple terms used for different types
of care are often confusing, so be specific about your
wants and needs when you discuss home care options.

Medical home care often requires a doctor’s order and
usually involves skilled nursing needs such as open
wound care, checks of vital signs, or infusion care.


Skilled nursing need = A need for services or care that 
can be performed only by a licensed nurse, such
as treating a wound, teaching the administration
of new medications, or assessing clinical status at
home. Often a requirement for home care by insurers.


A home health aide (sometimes also referred to as a personal
care attendant) is a person who is qualified to provide
“personal care,” such as assisting someone with
bathing, dressing, and getting around. They most often
work for a home healthcare agency and may also assist
with light housework. A home health aide is not usually
covered by insurance unless it is ordered in conjunction
with a skilled nursing need. A home attendant (or homemaker
care) is a person who can assist with shopping,
house cleaning, doing laundry, cooking, and accompanying
a person to appointments, and whose services are
usually not covered by most insurance policies.


Home health aide = A qualified person able to assist a patient
with bathing, dressing, getting around in his or her own home,
and doing other homemaking tasks (also, Personal care
attendant).


A common misperception among patients and family
is that they will automatically have insurance-covered
home care provided after their discharge from an inpatient
hospital admission, particularly after surgery.

Most insurance companies cover only skilled nursing
needs, usually requiring a registered nurse, a physical
therapist, an occupational therapist, or someone with
other medical expertise. In addition to covering
these skilled medical needs, policies sometimes cover
a limited number of home health aide hours (most
often fewer than 20 hours a week, if at all).

Patients and family may feel cheated if they were
expecting more professional assistance to be covered by
insurance. This is an upsetting situation that can be
avoided with advance preparation. Contact the insurance
carrier for your loved one and ask about home
care coverage and what, exactly, is needed for coverage
(for example, physician certification of a skilled nursing
need). Furthermore, it is important for patients
and family members to understand the limits of home
care and begin to make arrangements early for caring
for the patient at home. This may entail family members
helping the recuperating patient after discharge
with cooking, cleaning and other needs, and/or providing
other types of assistance, such as transportation
to follow-up doctor visits. Family members may also
need to learn to do wound dressing changes, take care
of drains, or manage other medical home equipment
or needs.

If home care is ordered by the doctor and covered by a
patient’s insurance, the discharge planning staff member
(often a social worker or nurse case manager) will
discuss the type of care the patient will receive and
when the initial home visit will take place. Sometimes
the home care agency will contact you directly to
establish the details after the formal referral has been
made by the discharge planning staff. Often a first visit
from an intake registered nurse will take place one day
to several days after discharge. The nurse will assess
the patient’s needs and the home environment to
determine the type of care, the frequency of visits, and
any equipment/supply needs that may be required. Be
sure to accurately describe your loved one’s diagnosis,
surgery, or other treatment side effects as well as any
other concerns or questions you have about managing
at home.

Before your loved one leaves the hospital, be sure to get
the names and numbers of the discharge planner (or
whomever you should contact at the hospital if you have
problems with the home care that is ordered), the name
of the home care agency, and whom you should contact
in case of a medical emergency (even after business
hours). This information should be located on discharge
papers you receive the day of discharge from the hospital.

Patients and family sometimes leave the hospital without
these crucial contact numbers, which can cause added
stress if they have a question later. If this information is
not given to you, or if you misplace it, ask for it and keep
it handy so that you can refer to it when needed.

In addition to medical home care and family or friend
caregivers, you might also want to investigate community
agencies that provide various services to a person’s
home, such as Meals on Wheels (where low-cost, prepared
meals are delivered directly to your home); senior
centers; private nonprofit organizations that serve
senior citizens or disabled individuals; volunteer agencies;
and churches, synagogues, and other religious
centers. Furthermore, there are long-term care policies,
and supplemental insurance coverage may be available
to purchase even after the cancer diagnosis. Contact
your state’s insurance department for a list of companies
that sell long-term care insurance or check with
your current medical insurance provider for purchasing
additional coverage.

If you feel that you and your loved one cannot manage
safely or easily at home, discuss other options with
your family and discharge planner. These can include
private pay home care, nursing home placement, or
assisted living options. New LifeStyles
is a good resource for investigating the
types of home care, facility placement, and other alternative
living arrangements (such as “assisted living”).

Now that my wife has completed cancer treatment, how do we move forward with our lives?

69. Now that my wife has completed cancer
treatment, how do we move forward with
our lives?



Advances in the early diagnosis and treatment of cancer
are increasing the number of people who survive
the disease. This also means that there is an increasing
number of patients and families who need input about
putting their cancer behind them and moving forward
again.

This may seem an easy adjustment to some people,
but for others, it is not. They may ask themselves,
“Isn’t this what I have dreamed about since the diagnosis?
Shouldn’t we be grateful she survived the cancer?”

However, the following issues may arise for both
patients and family members during the posttreatment
phase and complicate the process of cancer
recovery:

• Fear of cancer recurrence
• Changed self-esteem and self-image
• Legal and financial issues after diagnosis (e.g., initiating
a new job search, writing “the right résumé,” etc.)
• Concern about possible genetic predisposition of
cancer in family members
• Concern about future medical issues, follow-up, and
screening
• Leading a healthy lifestyle, including exercising,
stopping smoking, changing dietary habits
• Unresolved life issues that were postponed because
of diagnosis and treatment (such as marrying or
separating, having children, or changing careers)
• Long-term treatment side effects, such as scars,
ostomy, infertility, and sexual issues

Often, techniques used for coping with cancer diagnosis
and treatment help patients and their spouses
develop a broader understanding of life that includes
all of their experiences, including surviving cancer.

However, sometimes after treatment, survivors and
their families experience new problems in coping and
need to investigate new avenues to help themselves.

For some who coped well during the whole diagnosis
and treatment phase, the realization of the cancer
experience sometimes hits them long after the ordeal
is over. If you or your wife experiences some problems
moving forward, you may want to find a support
group, another survivor, or an oncology mental health
professional to help you understand and manage these
issues as you work toward restoring your quality of life.

Further information is available at survivorship programs
at many cancer centers, such as the American
Cancer Society and CancerCare, Inc.

My partner and I are in a committed relationship, but are not married.How will this affect us?

68. My partner and I are in a committed
relationship, but are not married.How will
this affect us?



If you and  your partner agree that you
are the primary caregiver and/or should
be privy to medical information, your partner
should make this clear to her doctors and family.



Non-married partners may face added challenges
when one person is diagnosed with cancer. These
challenges can be broken down into several categories:
interpersonal, legal, and financial.

First, define your relationship to yourself and ask yourself
practical questions, such as: How involved are you
going to be in your partner’s medical care and decisions?

Have you spoken to her about her wishes on
these matters? Are you going to be a primary contact
for the doctors and nurses, or is someone else in her
family? Are you going to be able to provide personal
care to your loved one if she becomes too debilitated to
care for herself (temporarily or permanently)? Think
about these important issues, and then discuss them
with your partner. A cancer diagnosis can make both
people think about the level of commitment in their
relationship and hopefully discuss these issues openly.

Partners of patients, whether they are in a heterosexual
or same-sex relationship, may sometimes feel ignored
in the medical setting or marginalized by the patient’s
family members. If you feel that you are being overlooked
by the medical staff, or by other involved family
members, speak with the patient first, if possible. If
you and your partner agree that you are the primary
caregiver and/or should be privy to medical information,
your partner should make this clear to her doctors
and family.

At many hospitals visitors are restricted to spouses
and “family members,” particularly in critical situations,
and hospitals may not provide medical information
over the telephone. Family members not
supportive of your relationship may try to exclude
you from discussions with the doctor, decision making,
and even prevent you from visiting the patient.

Protect yourself and the patient by establishing your
relationship and involvement with medical decisions
from the very beginning. Patient confidentiality
concerns limit what medical professionals can tell
people other than the patient about the patient’s
medical care. If your loved one agrees, she or he
should ask the doctor to clearly indicate in the medical
record that you are able to receive information
about the patient’s condition or medical details in
person or via telephone and have visiting privileges.


Patient confidentiality = Legal limits as to what the 
medical team can tell people other than the patient and 
his or her spouse or designated surrogate/healthcare
proxy.


Additionally, you should always carry a copy of the
signed healthcare proxy if you are identified as the
surrogate decision maker.

Same-sex couples sometimes face discrimination by
medical professionals. In addition to the financial and
legal protections mentioned in this book, you may also
want to talk with a community agency specializing in
gay/lesbian/transgender concerns. Advocates there
may have additional suggestions on how to protect
yourselves legally (since this can vary from state to
state), financially, and emotionally.

Both married and non-married couples need to budget
for unexpected costs related to the cancer diagnosis,
such as transportation, insurance premiums and copays,
and reduced income if the patient is unable to
work.Whether or not you and your partner keep your
finances separate, the two of you should discuss the
level of financial responsibility you are able, and willing,
to contribute. Financial issues are among the most
stressful issues with which couples coping with cancer
grapple, and more planning can reduce tension in your
relationship.

You want to be sure that your stake in any common
property or combined finances is legally recognized.

For example, domestic partners sometimes have their
home in just one person’s name, even though both
contribute to the house payments. If something
should happen to either one of you, your investment
in this property may not be recognized if your name
is not on the title or lease. In other words, you may
lose money and property if you are not legally protected.

Each state has unique laws pertaining to nonmarried
partners, and you should speak with a lawyer
to discuss ways to protect yourselves. For example,
property may need to be in both of your names, and
each of you should have a last will and testament.

You may also want to discuss other financial issues
with an accountant or financial planner. Some people
choose to put finances in a living trust, transfer
funds into the well partner’s account, establish financial
power of attorney, or open joint banking
accounts so that finances are less likely to be contested
by other people.


Last will and testament = A legal document specifying a 
person’s wishes with regard to inheritance after the
person dies.

Living trust = A legal document created for a person
while he or she is still alive in order to protect financial
assets. A financial planner or lawyer can provide details.

Power of attorney = A surrogate or proxy decision maker 
for the patient who legally makes all health-related and
financial decisions for the patient; entails a legal document.


There are other non-financial legal considerations
that you may discuss with a lawyer. If you serve as
your partner’s primary caregiver and/or he wants you
to serve as his healthcare surrogate decision maker,
you should make sure that he has identified you as
such in writing—in some states this is called a healthcare
proxy form. He may also see a lawyer to give you
his power of attorney regarding his health care. If your
partner does not specify you as the surrogate decision
maker, you may not have this right. In fact, in most
states, family members may have the legal right to
perform this role, thus potentially excluding you from
any involvement. You may also want to make sure that
relevant family members know that you are identified
as the surrogate and what your partner’s wishes are.

This may prevent crises and tensions between his
family members and you, particularly if your partner is
ever mentally incapacitated and medical decisions
need to be made.

Wednesday, June 29, 2016

Like any family,we have members who don’t get along, complicated by long-term, unresolved problems, divorces, etc. Is there any way to minimize these tensions, at least while we are dealing with this cancer?

67. Like any family,we have members who
don’t get along, complicated by long-term,
unresolved problems, divorces, etc. Is there
any way to minimize these tensions, at least
while we are dealing with this cancer?



Mark’s comment:

The only thing you can really do is talk honestly with all
the people involved. If they’re not willing to put aside their
problems, at the very least, ask them not to aggravate the
situation by airing grievances in these circumstances. If
they must have a fight, they can have it somewhere other
than in front of the person who’s sick.

The emotional impact of the diagnosis sometimes
brings family members together in positive ways, even
those who previously did not get along well. Family
members express their hope that they can all put aside
their personal differences and come together to support
the patient, and each other, during the cancer crisis.
Often, this way of coping is ideal and is the hope
of patients who feel they have enough to worry about
with the cancer and do not want to have this crisis
complicated by family disagreements.

However, sometimes family members cannot put the
past behind them, and the family problems they had
before the diagnosis may continue or even increase during
the diagnosis and treatment. The stress of cancer and
treatments may worsen already strained relationships.

Modern families are also complicated by divorces,
remarriages, step-family members, and so forth, and
family roles can be confused. For example, an adult child
may feel that he should be the primary caregiver and
decision maker rather than a new spouse by remarriage.

Such tensions can be hard to resolve and may be impossible
to avoid. Open communication about each person’s
beliefs and feelings can sometimes reduce tensions. A
truce, of sorts, can often be arranged while important
medical decisions need to be made and/or the patient
would benefit from a united family support system.

Tensions may also arise if you think that others are not
doing enough or not providing needed support. It is
sometimes helpful to designate a “coordinator” of care.

Think about designating someone in the family who is
least caught up in the tensions and whom other family
members will most likely follow. This person can arrange
schedules for the rest of the family, including providing
transportation to and from appointments, preparing
meals, cleaning the house, going grocery shopping, and
helping the patient do activities such as getting a haircut,
attending church/religious services, going shopping or to
sports events. The patient may also serve in this role of
care organizer, if he or she wants to. Family members
who are willing and able to be involved can be included
in caregiving responsibilities, if this is what the patient
wishes. For example, a spouse may not be able to attend
all medical appointments with the patient. Perhaps other
family members can share in this responsibility by taking
turns driving and providing support to the patient. Allow
the patient to identify his or her needs, and then start
to assign tasks. This way everyone will feel he or she is
contributing.

Disagreement about medical decisions is another common
source of tension among family members. Family
members may disagree with who should do what, when,
and how. Every person, even if he or she grew up in the
same family, brings different perspectives and values to
making important decisions. The patient may seek family
input if a decision needs to be made, such as starting,
changing, or stopping treatment for the cancer. Emotions
run high during such times. However, keep in
mind that the patient is the one making the decisions. If
he or she seeks out one or two people with whom to
consult, honor this decision. If the patient makes choices
you personally do not agree with, you may want to discuss
this, calmly, but always remember that medical decisions
are up to the patient, not you or other family
members. Supporting decisions that the patient makes is
an important, yet sometimes difficult job for the family.

If the patient becomes unable to make decisions on her
behalf, a surrogate or healthcare proxy should have been
previously identified by the patient. This person has the
legal right to make decisions on behalf of the patient.

However, this does not mean that close family members
should not be involved in the decisions. Hopefully, the
patient has identified a surrogate/healthcare proxy and
discussed her wishes in advance, reducing possible tensions
among family members. Seeking out healthcare
professionals to help coordinate the decision-making
process often helps reduce frustration and conflict.

Refer to Question 94 to learn more about healthcare
proxies and surrogate decision making.

Keep in mind that your perceptions of a family member’s
reactions are colored by your past experiences
with that person. Try to start with a clean slate when
dealing with the diagnosis and subsequent family
input. Put the past aside as much as possible and realize
that each family member will react to the diagnosis
and the added responsibilities in different ways. Some
people may use denial and/or avoidance as their
method of coping—they simply may not be able to
handle the emotions as well as others. Speaking to
such a person compassionately may help him or her
feel better—maybe he or she can become more
involved by doing fun activities with the patient,
instead of staying for long visits at the hospital or
attending medical appointments—both of which may
be overwhelming.

Realize, however, that no matter how hard you try, you
may not be able to resolve tensions in the family or
change others’ reactions or behaviors. Focus on what
you can do to help the patient, your family, and yourself.

If you pay more attention to yourself and your
own reactions to stress, and think less about other people’s
reactions, they may bother you less often. Additionally,
tensions may ease if family members set an
example of putting the past behind them and focusing
on the present situation.

Since my spouse’s diagnosis, it seems that our family has really changed.We have each risen to the challenge, but how much change is good for our family, and how can we keep things as normal as possible?

66. Since my spouse’s diagnosis, it seems that
our family has really changed.We have each
risen to the challenge, but how much change
is good for our family, and how can we keep
things as normal as possible?



Not only is maintaining a daily routine practical, but
it is also comforting to keep things consistent at a
time when uncertainty about medical issues is high.



Cancer affects the entire family, not merely the patient
diagnosed with the disease. All family members will
react to the news of the cancer diagnosis in their own
ways, and each will cope differently. However, despite
being unique people, you are also part of one family,
and what you each do will affect the rest of the members.

All of you are coping with the normal reactions
to the cancer and feeling appropriate emotions; in
addition, daily life may be altered. The person diagnosed
with cancer may not be able to fulfill his or her
household chores or professional obligations due to
medical treatment or physical changes, and the role of
other family members may need to adjust to compensate.

For example, if long-distance family members
come to the patient’s home to help care for the patient,
having another person around, no matter how helpful
and loving, is still a change to which your family needs
to adapt.

Keeping family life as normal as possible is a good
goal, but be flexible if modifications to your normal
routine are needed or unavoidable. For example, try to
go to bed and wake up at the same times you are used
to, eat meals at the same time, and keep up with physical
activity. After the initial crisis of the diagnosis,
make a point to socialize, attend religious services, and
enjoy other activities. Still clean the house, do the
laundry and other chores (as much as possible). Not
only is maintaining a daily routine practical (the dishes
will be done!), but it is also comforting to keep things
consistent at a time when uncertainty about medical
issues is high. Children, in particular, respond well to
keeping a normal routine. Furthermore, doing things
not related to the diagnosis can be a practical temporary
distraction from the doctors, the hospital, and
other reminders of the cancer.

Hopefully, a “new normal” for your family will be established
with time. As you begin to understand more
about the disease, its symptoms, and your loved one’s
treatments, these aspects of the cancer will become part
of your “new normal.” Talk with your family members,
including your spouse, about what the change has been
like for them. Communication not only can allow people
to vent their feelings, but it can also be an effective
way for you to identify tensions and find solutions to
ensure that life proceeds as normally as possible. If you
believe that your family needs help communicating or
adjusting to the diagnosis, family therapy can be helpful.

You may want to contact your hospital social worker or
investigate local family therapists.

Maintaining normal routines does not mean that you
should be inflexible if alterations in your life need to be
made. It also does not mean that the family needs to
“pretend” that everything is wonderful. Try to strike a
balance between maintaining consistency, but be willing
to change, since sticking to harsh regimens can
exacerbate tensions.



I heard that my wife’s cancer may be genetically related.Do other family members have to be told? Should they be encouraged to be tested for cancer themselves?

65. I heard that my wife’s cancer may be
genetically related.Do other family members
have to be told? Should they be encouraged
to be tested for cancer themselves?



The first thing your wife needs to do is to sit down
with her doctor to clarify what is meant by “genetically
related.” This term can mean many different things,
and you and your wife need to understand exactly what
the doctor means by this statement. If the doctor
believes your wife’s cancer could indicate an increased
risk factor for relatives or your children (or future children),
you may consider seeking more information
from a genetic counselor to discuss what is known
about her cancer and its connection with genetics.
Based on her family history of cancer, or perhaps
through further genetic testing, the counselor will be
able to make recommendations regarding screening
tests for the cancer, which member(s) of the family
should undergo these tests, and when. Since the earlier
a cancer is diagnosed, the better the chances for cure,
this information can be of life-altering importance to
other family members.


Genetic counselor =  An expert in genetics, a branch 
of science focused on the transmission and 
consequences of biologic inheritance.


However, people at higher risk for cancer may avoid
getting these tests based on the very powerful fear of
finding out that they have the disease or that they have
passed on a genetic predisposition for cancer to their
children. Similarly, the person with cancer may fear
that telling other family members that they are at a
higher risk for cancer will cause their loved ones emotional
distress.

Talking about personal fears with your spouse and a
member of your medical team can help clarify the
underlying beliefs causing your resistance. They also
may help provide strategies for good communication.
For many families informed about their risk of a cancer
diagnosis, the bonds of support and love only
strengthen.
Clearly, if there is someone in the family who is
already extremely emotionally distressed or psychiatrically
unstable, caution needs to be exercised in passing
this information on to that individual. In any case,
anyone contemplating testing should be made aware
that there are genetic counselors and trained clinicians
to help him or her understand the personal risk for
developing cancer and how to cope with the psychological
challenges that this knowledge can bring. The
Appendix contains information to help with issues
related to genetic testing and counseling.

My husband is not sure whether he wants to tell anyone about his diagnosis

64. My husband is not sure whether he
wants to tell anyone about his diagnosis.
I believe that I have to let some family
members and friends know what’s going on.
Whom do I tell, what do I tell them, and how
will they react?



If you start to feel overwhelmed, simply tell
people that you appreciate their concern but that you
feel better discussing the medical concerns solely
with the doctor.



Some people do not tell anyone anything (sometimes
not even their spouses) about the cancer diagnosis,
whereas others tell the world everything (literally,
by writing books about their experiences).While telling
no one can lead to lack of support and isolation, disclosure
is a highly personal decision, and one that
patients should have as much control over as possible.

Discussions about medical issues and body functions
are usually kept private in our society. It’s natural for
people to be unsure of how much to tell others. After
learning about your husband’s cancer, such as where in
the body it is located and about the functions of that
body part, both of you may begin to practice talking
about his diagnosis with close, trusted friends and
family. See how they react and what questions they
ask. Often, knowing what other people think and the
questions they ask helps patients and family members
prepare themselves for what to tell other people. If you
and your husband feel comfortable and choose to tell
other people, start talking about his diagnosis more
openly. If it fits with your personality, humor is often a
good icebreaker and can make you and others feel
more at ease. As patients learn more about their cancer,
prognosis, and treatment plan—and the helpful
role that family and friends can play in this process—
they may become more comfortable generally talking
about their illness.

Keep in mind that you and your husband may have
different ideas regarding who, what, and how to tell
others. He may need more time than you do to adjust
to the diagnosis, or he may feel that he wants to keep
this information confidential. You and your husband
may want to specify what you are going to tell other
people if they ask you questions, so that you are providing
consistent information.

Remember, people you tell will have their own conceptions
about cancer. If you decide to disclose the diagnosis,
be prepared for a variety of reactions to the
news. For some, talking about cancer elicits fear and
misunderstanding, and they may want to avoid the
topic. Some people wrongly believe that cancer is contagious
or that cancer is always terminal. Some
patients and family members have felt rejected by others’
unintentional reactions, sometimes from close
friends who do not call anymore or do not want to
socialize. On the other hand, other friends or even
distant acquaintances may offer their support. Old
friendships can grow and new friendships bloom.

Some people may be very interested in your husband’s
diagnosis, treatment, and even prognosis. For these
reactions, provide only as much information as he and
you feel comfortable providing—don’t feel pressured
to divulge too much. People may also want to share
their own experiences with cancer or information that
they think will be helpful. Some family members have
found advice and sharing helpful, particularly in the
beginning. However, sometimes this information can
be confusing, particularly when the information is
irrelevant to your situation or when it is upsetting. If
you start to feel overwhelmed, simply tell people that
you appreciate their concern but that you feel better
discussing the medical concerns solely with the doctor.

You may hear of, or know of, other people diagnosed
with cancer, maybe even the same type of
cancer, who are not faring well medically. Remember,
however, that every person is different, every cancer is
different, and every person’s response to treatment is
unique.

Most people will be supportive and sensitive to you
and your husband’s needs and offer support. Be prepared
to accept such offers. Do not be afraid to ask for
specific help, such as driving your children to their
activities, preparing meals, helping with laundry and
cleaning, or just doing something fun together. People
with whom you share the diagnosis may be relieved
when you ask for specific help as it takes pressure off
them to try to figure out how to help. They want to
feel useful and be involved. Furthermore, by accepting
assistance, you may feel less stressed by having fewer
drains on your energy.

My friend is a single mother of two young children. Even though she is doing fine medically since her cancer diagnosis, she would like to make plans for the care of the children if something should happen to her. Is this possible? If so, what do I do to help her?

63. My friend is a single mother of two
young children. Even though she is doing
fine medically since her cancer diagnosis, she
would like to make plans for the care of the
children if something should happen to her. Is
this possible? If so, what do I do to help her?


Thousands of children are orphaned every year due to
the death of a parent. The care of these children after a
parent’s death is often not planned for. Subsequently,
these children may be placed in foster care, may be
adopted, or may be subject to other legal and non-legal
arrangements, often causing disruption and trauma to
the children involved. To avoid confusion, to reduce
trauma to the children and potential guardians, and to
increase the peace of mind of the parent, a standby
guardian can be legally designated. A parent, such as
your friend who is diagnosed with a life-threatening
illness, can identify a standby guardian in case something
happens to her in the future—either due to this
illness or for another reason.


Standby guardian =  A legally designated person who will 
have custody of a patient’s children in the event of their 
parent’s death or mental incapacitation.


Securing standby guardianship for children is a very
emotionally difficult thing for any parent to do. It represents
an acknowledgment that it’s possible she may
not live long enough to see her children grow up, and
accepting this reality is the initial, but most difficult
step. It sounds as if your friend has already come to
this realization. And, even though she is doing well
medically now, she is putting her children’s needs first
by wanting to make plans for their future if something
does happen to her.

There are many ways you can help her. Be there to
talk to her about her feelings, thoughts, and plans for
her children. If she does not have a specific person or
couple in mind as potential guardians, then she may
need your support in deciding whom to ask. The first
person usually considered is a biological parent (the
children’s father/s). If this is not possible or recommended,
other family members or close friends may
be identified. After she has already identified someone,
she may need your support talking to that person
about her plans. As a friend, you can be there for her
for emotional support and guidance.

You may also want to investigate resources for her,
such as lawyers who specialize in custody planning. If
the patient is not able to afford a lawyer, she can contact
agencies to seek assistance, such as the Legal Aid
Society or the bar association of the state where she
lives. It is important that her plans for guardianship
are planned out legally to allow for the smoothest transition,
and many resources are available to help her
through this process, including the Internet. (See
 www.standbyguardianship.org, a Web site
providing state-by-state information regarding standby
guardianship legislation, and www.lawhelp.org, which
is an online legal assistance referral service for people
with low to moderate incomes.)

Children should be made aware of the plans for their
future, and they should talk about this with their
mother, if possible. As a friend, you can help arrange
these discussions between the patient and her children
if she is finding it difficult to do so. Children need to
know that their mother is taking care of them, no
matter what happens. They may be sad and upset,
understandably, but the fewer surprises they experience,
the better they will cope. If your friend does die
from this disease, you can be there to help her children
adjust to her death. Knowing of your support
now and in the future may be particularly comforting
to your friend.

Tuesday, June 28, 2016

How do I know if my children are having problems coping?

62.How do I know if my children are having
problems coping?



Take steps to ensure that significant adults around
your child are providing consistent messages.



Kathleen McCue, the author of How to Help Children
Through a Parent’s Serious Illness, describes some of the
warning signs to look out for: major changes or disturbances
in sleeping or eating; the appearance of new
fears that won’t go away; retreating into silence; and
trouble with developmental milestones (for example, a
potty-trained toddler who starts to wet the bed or a
teenager’s drop in grades at school). See the Appendix
for the full reference to this very helpful book.

If you are unsure about how to talk to your child or
have concerns about how he or she is coping with the
diagnosis, speak to a social worker or counselor who
specializes in helping children of a parent with cancer.

If your children are in school, talking with their teachers
and/or a school counselor can be helpful, too. Take
steps to ensure that significant adults (such as caregivers,
close family members, and teachers) around
your child are providing consistent messages. You may
want to tell these adults generally what your wife is
going through medically and what your child already
knows. These people will be able to provide support to
your child and also notify you if they have concerns
about how your child is coping. If you have concerns
about how your children are coping with the diagnosis,
you can investigate counseling for your children or
groups intended specially for children coping with a
parent diagnosed with cancer.

What if my child asks: “Is Mommy going to die?”

61.What if my child asks: “Is Mommy going
to die?”



Children of all ages often ask the “hard” questions that
adults have learned not to blurt out. For example,
sometimes the first question out of a younger child’s
mouth after being told a parent has cancer is “Is
Mommy (or Daddy) going to die?” This is the hard
one. Not only can it bring up tremendous feelings of
fear and anxiety in you, but it is also the time when
most parents want to reassure their child (and themselves)
that everything is going to be okay and that, of
course, Mommy (or Daddy) will not die, will never die.

However, this is simply not true. Just as flowers and
pets will die, everyone dies at some point. While it is
important that you reassure your child, do not misrepresent
the truth. You can say something like, “Yes,
Mommy does have cancer. However, she is getting the
best treatment and seeing the best doctors who are
going to try everything to fight this cancer. Everyone
dies someday, but we are going to battle this cancer
with all our might.” If they have known someone else
to die from cancer, you need to reassure them that this
is not necessarily going to happen to their mother.

Give your child age-appropriate specifics about the
cancer and treatment, including how Mom’s cancer is
different from other situations your child may know
about (such as a grandmother who died of cancer).

Our children haven’t said much since their father was diagnosed with cancer, but we’ve noticed that they’re trying almost too hard to help out at home, which is definitely a change. Is this normal?

60. Our children haven’t said much since
their father was diagnosed with cancer, but
we’ve noticed that they’re trying almost too
hard to help out at home, which is definitely
a change. Is this normal?



You may be surprised at what your children may
be thinking. Ask them.
They need reassurance that they are neither the
cause of the cancer nor responsible formaking it
go away.



Children often blame themselves for problems, including
a parent’s cancer diagnosis. Many children create
fantasies to explain events. They might think that their
father got cancer because they were not doing well in
school or because they shouted something at him or
secretly wished that something bad would happen to
him the last time they were punished. Because children
often think that they did something to cause the
cancer, they sometimes think that they have the power
to make it go away. A youngster may become the
“model child” and try to do everything right. A
teenager may suddenly become overly helpful around
the house or the play the role of “substitute parent.”

Sometimes parents mistake this exemplary behavior
to mean that their child is coping well. However,
being “perfect” can be a tremendous burden for your
child because of the feelings of responsibility that
this method of coping entails. Children may fear
that if they “mess up,” they will make the ill parent
worse; if a complication occurs, they may feel guilty
that they did not try hard enough to be perfect. You
may be surprised at what your children may be
thinking. Ask them. They need reassurance that they
are neither the cause of the cancer nor responsible
for making it go away.

Is it okay to bring a child to the hospital?

59. Is it okay to bring a child to the hospital?



Mark’s comment:

Children have the right to see their sick grandparent or
parent, dying or not. Death is part of life, and though this
might be the first time the child sees it, it won’t be the
last—so don’t treat it like it’s some great horror or mystery
for the kid to be afraid of. Kids get more upset if
they’re not allowed to say their goodbyes to dying relatives,
so you’re not doing them any favors by keeping them
out of the sick room.

Some children become very involved and interested in
cancer and treatment. They may even want to attend
appointments or visit their parent at the hospital.

Allowing them to attend an appointment (after first
discussing this with your physician and establishing
guidelines) may be a good way for them to be reassured
and have the opportunity to ask questions. However,
it is important not to overwhelm them with
information; otherwise, this meeting may make them
more anxious and have the opposite effect of what was
intended.

Children who want to go to chemotherapy or visit the
hospital should be prepared beforehand. Tell them
about the treatments and about what they might see
(including tubes, other sick patients, and so on). Taking
a picture of your wife in treatment can also help
them visualize what they might see before they arrive.

Some children want to learn about all the tubes,
stitches, and other accessories of treatment. Feel free to
give them as much information as you, and they, feel
comfortable with. Remember, you are the expert on
your child, so pay attention to your instincts, and stop
when you feel he or she has experienced enough.

Since most hospitals have visiting hours and policies
that may restrict child visitors under a certain age, ask
about your hospital’s policies before bringing your
child to visit.

I have two children. I don’t want to tell them about my wife’s diagnosis and surgery because I don’t want to upset them. I can barely handle this myself, so how can they cope with the cancer? Should I tell them about the cancer, and if so, how much?

58. I have two children. I don’t want to tell
them about my wife’s diagnosis and surgery
because I don’t want to upset them. I can
barely handle this myself, so how can they
cope with the cancer? Should I tell them
about the cancer, and if so, how much?



Be honest and consistent, and reassure your
child that the cancer is no one’s fault.



Telling your children about your wife’s cancer diagnosis
is one of the most difficult issues you may have to
face as a parent. Some people are reluctant to tell their
children; whereas, others want to be as open as possible.

Research and our professional experience as oncology
counselors indicate that telling children the truth
from the beginning generally leads to better adjustment.

However, as their parent, you are the expert on
your children, and you should keep them as involved
only as much as you and they feel comfortable. Furthermore,
as the “well” parent or family member, you
may be able to play a valuable role in establishing communication
with your children, since oftentimes the
parent with cancer is unavailable (in the hospital, for
example), and you may spend more time with the children
due to increased childcare responsibilities when
your spouse is not feeling well.

Obviously, the ages of children affect what type and
how much information they can comprehend. For
example, a 4-year-old will not understand as much
detail as a 10-year-old, nor will a 10-year-old understand
as much as a teenager. However, the following
guidelines may be helpful and, unless otherwise stated,
are good points to keep in mind for all age groups of
children. A grandparent (or other family member) may
also find the following information helpful.

• Children have a good sense for what is going on
with the person with cancer and the family. They
often observe subtle changes as well as obvious ones
(e.g., concerns about hospital bills or overhearing
you or a family member on the phone). Therefore,
they may know about the diagnosis anyway, and
maybe they should hear it from you or your
spouse—the earlier, the better. This is a time to
develop trust with your child regarding the diagnosis
and treatment.

• Because every type of cancer is different, and each
person’s treatment is individually tailored, you need
to give your children the opportunity to ask about
your wife’s cancer and treatments so that they do
not get misinformation (from the Internet, gossip,
family friends, relatives, or other children).

• The word “cancer” is an abstract term that is often
hard for children to understand, which can lead to
increased fear and misunderstanding. Showing children
age-appropriate pictures and diagrams of the
body, including where the cancer is located—or
especially for younger children, allowing them to
draw pictures of it themselves—will help them
conceptualize the cancer. One 6-year-old girl drew
a picture of her father with a big black dot on his
“tummy,” representing the cancer. This picture
made it much easier for her to visualize and talk
about the cancer with her parents.

• Your children may react differently after they discuss
the cancer with you and your spouse. Some children,
especially very young children, can digest only bits of
information at a time. They may not ask questions
initially, so make sure that the “big talk” is not just a
one-time thing. Continue to check in with your
children to see how they are doing and to tell them
how you are doing, too. However, if they do not
want to talk, do not push them. Instead, explain to
them that they can ask you or your wife any questions
they like, which gives them control. Remember
that if you have more than one child, each one may
react differently. Think about whether you want to
talk to your children together or individually. One
compromise is to have a family meeting first and
then follow up with each child separately.

• Children often focus on how cancer will affect their
lives, occasionally appearing selfish and expressing
anger and frustration. Teenagers and children may
resent being asked to help with household duties to
help a sick parent. Try to be patient with a child
who expresses these feelings and to understand
without judgment (which can be difficult). Try to
find solutions, such as temporarily hiring a housekeeper
or asking family or neighbors to help with
household chores so that household routines are less
disrupted.

• Providing physical reassurance, such as hugs and
touch, is important to you and your children, especially
infants or toddlers, for whom modes of communication
are limited. Your wife may not be able
to play “rough” with your children immediately after
surgery or because of fatigue, so explain this to your
children and substitute other activities and forms of
physical connection (such as sitting closely together,
watching a video, or reading together). You do not
want them to mistake a lack of physical attention as
rejection.

• Continue (as much as possible) with pre-cancer
routines and disciplinary actions. This may be difficult
because you have demands on your time, but try
to allow your child to remain in his or her activities,
see friends, and get up in the morning and go to bed
at the same times. Some parents want to be more
indulgent, and some more strict; however, this is not
going to make your child cope any better. Consistency
communicates security to children.

Tip: Be honest and consistent, and reassure your child that
the cancer is no one’s fault.

The doctor told me some news about my mother’s cancer; should I tell her? Wouldn’t it be better not to tell her and avoid upsetting her?

57. The doctor told me some news about my
mother’s cancer; should I tell her? Wouldn’t it be
better not to tell her and avoid upsetting her?



Mark’s comment:

If the doctor is telling you things that he isn’t telling his
patient, I feel that you should FIRE HIM. It is the doctor’s
responsibility to talk honestly with his patient, and if he
can’t do that, it’s time to find another doctor. This stuff they
used to do about “protecting” the patient was ridiculous
then, and it’s even more ridiculous now. Besides, if he’s
talking to you and not his patient, unless the patient is
mentally incompetent or a minor child, he’s committing
malpractice and you don’t want him laying a finger on
someone you love anyway!

Still, some doctors do avoid telling their patients bad news.
My friend Frank got frustrated by his first doctor, but
couldn’t figure out what the problem was. I helped him figure
out that the doctor wasn’t communicating well, so
Frank didn’t truly understand what was wrong. I would
ask simple questions about what the doctor had said, and
Frank wouldn’t be able to answer; he would complain that
the doctor was unclear, or say that they were scheduling
him for more tests before they’d tell him anything. The
doctor he was with at that time wasn’t a specialist and
didn’t seem to remember Frank’s symptoms or have a good
grasp of what was wrong with him whenever Frank had
an appointment. He even scheduled Frank for a test
requiring contrast when Frank had already told him that
he had an allergy to contrast! So when I put all of these
factors together and showed Frank the pattern, he realized
that he needed a different doctor—and he got the
“bad news” pretty quickly too, and found that it really
wasn’t all that bad.

For centuries, physicians often told family members
about a patient’s medical condition and did not tell the
patient, believing it to be too much stress for the patient
to handle. Until recently in the United States, patients
were specifically not told about a cancer diagnosis
because it was equated with an automatic “death sentence.”
This thinking has changed in recent decades for
many reasons.

First of all, cancer is becoming a treatable illness, and
there is a greater probability that people with cancer
will survive this disease rather than die of the cancer.
Second, because of all the treatment possibilities and
side effects of these treatments, patients themselves
need to be aware of what they will be going through so
that they can make good, informed decisions about
what treatments they choose to take. Third, ethically
and legally in the United States, patients need to be
told about their disease and about all reasonable treatments
in a process called informed consent. Informed
consent is based on the idea that individuals should
make decisions for themselves. It is a crucial process of
communication between physician and patient (and her
family, if she chooses), and often entails patients signing
forms indicating their understanding of and agreement
to certain procedures and treatments.

There are a few exceptions to adult patients providing
informed consent. Patients can be deemed incapacitated
for the purpose of making medical decisions, in
which case a surrogate decision maker or healthcare
proxy provides consent for procedures or treatments.

However, even if a patient is deemed incapacitated and
cannot provide informed consent, physicians usually
try to give a patient as much information as possible,
even if the proxy is the official decision maker. In other
circumstances, a patient may explicitly state to the
physician that he or she does not want to know anything
about the disease or treatments, designating a
person with whom the physician can communicate
and obtain informed consent. How this is handled
depends on the individual physician and hospital policies.

Or, in rare cases, a physician can determine that a
clinical exception should be made, indicating that
telling the patient about a medical issue would cause
so much psychological and emotional harm to a
patient that it could affect the medical condition or
safety of the patient. For example, a physician may
postpone talking about the cancer with a patient with
severe depression or with one who is actively suicidal
until he or she is psychiatrically stable.

Cultural circumstances may impact whether family
members want a patient to be told “bad news,” such as
the initial cancer diagnosis or the spread of the cancer.

In some cultures, it is common for adult children to
completely manage their parents’ medical care, including
speaking with the physicians, deciding about treatment,
and so forth. However, in the United States,
these cultural standards are sometimes in conflict with
the legal standards and ethics in medicine. Communication
with the doctor, patient, and family can often
clarify such concerns.

Physicians may tell the family more about a patient’s
illness than they tell the patient. Initially, you may
think this is a good idea. However, we have found
that it can be difficult for the more informed family
members for many reasons, not the least being that
they know a “secret” that the patient does not know
about her own body. Secrets are often disruptive to
communication, since family members have to hold
back their emotional reactions to the news to “protect”
the patient. This can create distrust between
the patient and the family (since patients almost
always realize when things are not being told to
them) or between the patient and her physician if
the patient does not believe the doctor is being
truthful with her.

In summary, unless there is a really good reason not to
tell your mother, she should be told about the news, no
matter what it is, ideally directly from the physician herself.

Try not to take on the “go-between” role of relating
information from the physician to your mother, since
this can be a very stressful role for you to assume. If the
physician tells you things in the future, you may want to
direct her to your mother and have the discussion
together. Patients usually find out the truth anyway, and
it is the not knowing that increases their sense of being
out of control.We have found that patients usually handle
things better than their family and doctors expected,
and that information is a crucial part of patients establishing
a sense of control. Not knowing, as our patients
often say, is worse than knowing the worst.


Informed consent = After a patient is educated about his 
or her diagnosis and all reasonable procedures and 
treatments  options for the disease, he or she must
indicate an understanding of and agreement to a
course of action by signing forms.


Incapacitated = A term used when patient is deemed by
the medical team as being unable to give informed consent 
for a medical procedure (i.e., comatose, mentally disoriented).


Healthcare proxy = A document (also called medical
durable power of attorney or healthcare agent) designating a
family member, guardian, or friend as the decision maker
about medical treatment for a patient.


Surrogate decision maker = A person designated to make 
healthrelated decisions for that patient. The medical
team addresses all healthcare issues for the patient directly 
to the surrogate.


We want to have children in the future. Is this possible after cancer?

56. We want to have children in the future. Is
this possible after cancer?



If you and your partner are thinking about having
children after his or her treatment for cancer, talk
with the oncology physician as soon as possible.



If you and your partner are thinking about having children
after his or her treatment for cancer, talk with the
oncology physician as soon as possible. Sometimes
radiation therapy, chemotherapy, and certain surgeries
can cause infertility for both men and women. To be
successful, it is often crucial that steps are taken before
cancer treatment for most kinds of alternative fertility
options for cancer patients, such as sperm-banking or
harvesting eggs. New options are also available, particularly
for women, such as preservation of ovarian tissue
removed before treatment which can later be
implanted into the body after cancer therapy is finished.

Eggs are then harvested and fertilized, with the
hope of creating embryos. State-of-the-art research is
being conducted assessing methods of preserving fertility
among cancer survivors at the Center for Reproductive
Medicine and Infertility in New York City.

In addition to exploring the medical and technology
options, also be sure to investigate insurance coverage
and the costs associated with such fertility treatments.

There are now organizations advocating for better
insurance coverage and possible financial assistance to
young adult cancer patients for fertility treatments,
such as Fertile Hope.

What techniques can I use to deal with sexual changes associated with cancer?

55.What techniques can I use to deal with
sexual changes associated with cancer?


As a person moves beyond the initial phase of diagnosis
and making treatment decisions, questions regarding
other aspects of the person’s life become
increasingly important. Often, such concerns include
intimacy, sexuality, and sexual side effects during and
after diagnosis and treatment. For some people, however,
sex is a difficult topic to talk about, both with
their partners and with the medical team. Nonetheless,
open communication can be an important factor in
maintaining or regaining your sexuality.

Patients having surgery may experience a decrease in
sex drive before surgery because they may be preoccupied
with the upcoming treatment and, similarly, during
the recuperation period. After surgery and during
other treatments, they may experience body changes.

These include adjusting to scars, removal of body parts
(such as a mastectomy), or functions altered due to
some types of treatments. Depending on the type of
treatment, different varieties of sexual problems can
result. Some people feel embarrassed about these
changes to their bodies, particularly soon after surgery
or medical treatment. With time, they can become
accustomed to possible body changes, particularly with
assistance from medical professionals and by discussing
their concerns with the team and their partners.

For example, once an incision has healed, it will
not be hurt by touching or intimate activity.

If your partner is experiencing sexual changes, and
these changes are significantly affecting both of you,
this may be a good time to think creatively about sex
and intimacy. Touching, caressing, oral and finger stimulation,
and use of sexual paraphernalia are sometimes
as arousing and stimulating as traditional sexual intercourse
(or more so for some people). As you start to
experiment, you may find new ways of pleasing your
partner and new activities that you enjoy, too. Often,
couples experience resurgence in loving feelings toward
one another when they are faced with cancer. Focus on
these feelings during lovemaking and sexual practice.


Sexual paraphernalia = An apparatus or object used in 
sexual activity.


As a sexual partner, you may sometimes be in conflict
about whether to initiate sexual contact with the
patient. Some significant others have avoided any and
all mention of sex for fear of offending the patient.We
have heard spouses say that they feel guilty for having
sexual desires while their loved one is ill. Avoiding
healthy sexual expression may not be healthy for your
relationship, particularly if it was an important part of
your lives before the cancer. Sexual desire is a healthy,
natural aspect of human existence. Talk about your feelings
with your partner. Perhaps your desire is very flattering
even though he or she may not be feeling
particularly physically desirable. If sexual expression is
not possible, for any reason, do not push the issue. Show
your love by touch and words until the patient is ready.

Patients may be particularly sensitive to initiating intimate
relationships with new sexual partners. Beginning
sexual expression will take time, and each situation is
different. Patients and their partners should listen to
themselves and follow their instincts. Also, keep in
mind that sexual adjustment, under any circumstance,
starts with being informed and with learning good
communication skills.

If you and your loved one continue to have questions
or experience problems, you may want to contact a
physician or a therapist who specializes in treating
sexual issues. Prescription treatments are available to
help with maintaining erection or lubricants for
improving vaginal lubrication. Preventive measures,
such as using vaginal dilators for women undergoing
radiation therapy to the pelvic region (which can
make the vaginal walls constrict), or surgical procedures,
such as reconstruction, may be possible also for
some types of sexual dysfunction.

I feel that my husband and I are growing apart since his cancer diagnosis.Why is this happening?

54. I feel that my husband and I are growing
apart since his cancer diagnosis.Why is this
happening?



Discussing feelings or the topic of cancer
is difficult, even for the most expressive
people. Remember, however, that displaying
emotions, even tears, can bring people
closer together.



This is a hard question to answer without understanding
much about a couple’s relationship before the cancer
diagnosis. However, cancer is a huge stress on
individuals, families, and couples, and this stress can
strain even the closest relationships. A primary contributor
to emotional distance is blocked communication.

A common reaction we see among patient and
family alike is a wish to protect the other from
unpleasant reactions or feelings. Sometimes, holding
back thoughts or emotions is appropriate. However, if
this becomes a pattern and these reactions are never
discussed, holding back from telling your partner may
sometimes seem like keeping a secret.

We have found that if patients and their partners
start talking more openly about their fears, emotions,
and questions, they often find they have a better
understanding of where the other person is coming
from, which can make people feel more connected to
each other. Discussing feelings or the topic of cancer
is difficult, even for the most expressive people.

Remember, however, that displaying emotions, even
tears, can bring people closer together. Good support
is one of the most important parts of positive coping.

Often, reduced intimacy occurs after a cancer diagnosis,
and this can contribute to the belief that you are
growing apart. This feeling can stem from less effective
communication, as stated earlier, but also from stress,
changes in a patient’s body image, and side effects of
cancer treatment (such as fatigue, nausea, recuperation
from surgery).

Part of maintaining or improving communication
also starts with the physical connection you
and your spouse share. If sexual relations were an
important part of your pre-cancer relationship and are
not now, you may want to alter how both of you react
physically to one another. For example, affection shown
by hugs, kisses, and touches may be reassuring to the
patient, and to you. As the initial shock of the diagnosis
passes, you may find that new ways of physical communication
will transform into a sexual connection. Couples
also tell us that their sex lives fluctuate, depending
on their stress levels. This is normal. When people are
preoccupied, sex may be the furthest thing from their
minds. For others, it is the best stress-reliever!

Am I a spouse, or am I a caregiver?

53. Am I a spouse, or am I a caregiver?


The simple answer is that you are both spouse and caregiver.
Unexpected illness and/or disability make many
couples reexamine their relationships and how they
view their respective roles.While they may have previously
expected to regard each other, at least ideally, as
equal partners, the practical and emotional dictates of
caregiving—and the often ambiguous question of who
is in control—can alter roles in the relationship between
spousal partners, leading to confusion and tension.

People have very different expectations about their
roles as spouse, caregiver, or care recipient based on
their family history, cultural background, or personal
beliefs. While there may be no way to define the
ideal relationship for you and your spouse, there are
recommendations we can offer to help make the
relationship work more effectively.

The way to begin is to have a discussion with each other
about how you currently view your roles, and particularly,
the boundaries and limits of your respective positions as
caregiver and care recipient.Too often, the “well” partner
tries to “do it all,” repressing his or her own needs in the
process, and often forgoing the hopes and plans he or
she may have had for the future. If there is a sense of
entitlement on the part of the care recipient, fixed in the
role of the “sick spouse,” this can contribute to feelings of
resentment that build over time. Knowing what you and
your spouse expect of each other, and then sensitively
setting limits, can help reduce the guilt the caregiver may
have over “not doing enough” as well as the guilt the care
recipient may feel for being a burden and asking for too
much. For example, one spouse, John, felt very uncomfortable
assisting his wife to the bathroom during her
hospital stay. He felt even more embarrassed when she
had “accidents” in her bed when he could not get her up
in time. He told us that he felt guilty for his reactions,
thinking that he should be able to help his wife in every
way. He explained that he had never seen his wife doing
her “private bathroom things” in the past, and subsequent
discussion with his wife unearthed that she was
also embarrassed by her body functions in John’s presence.

A solution was reached that the spouse would call
the nursing aide or his daughter (who was more comfortable
assisting in such intimate things) to assist. In the
end, John and his wife felt more comfortable by setting
some limits to the practical care he provided and making
alternative arrangements.

There may be times when rigidity on one or both
sides causes communication to become strained. You,
for example, would like to turn over some of your
caregiving duties to a home attendant, but your
spouse refuses to let strangers come into the home.

After addressing each other’s concerns, it may be necessary
to negotiate a compromise position—perhaps
getting another family member or a friend to help, or
hiring someone to help for a few hours each day or
week. Although you want to help your partner to
regain a sense of control over his or her life (which
may be reduced when faced with illness), this should
not come at the cost of surrendering control over your
own life. Legitimizing both partner’s needs and then
trying to maintain autonomy and flexibility in performing
your roles are key strategies for preventing
the challenges of caregiving from permanently undermining
your relationship.

How can I be “strong” and supportive with my spouse while continuing to cope with my own reactions to this diagnosis?

52. How can I be “strong” and supportive
with my spouse while continuing to cope
with my own reactions to this diagnosis?



Just as patients feel a loss of control when they are
diagnosed with a medical illness, caregivers also
often feel a loss of control.



After his wife was diagnosed with cancer, one husband
said, “I feel like I am a passenger in a car on a dangerous,
icy road. My wife is driving, and she is ultimately
in control of crucial decisions that will affect both of
us, and I am fearful of what will happen.” Just as
patients feel a loss of control when they are diagnosed
with a medical illness, caregivers also often feel a loss
of control. As a spouse, you are an observer of what is
happening, but you are also profoundly affected by
your partner’s reactions and decisions.

You probably share a large burden of the caregiving
responsibilities. Loved ones report periodically feeling
helpless and concerned that, no matter how hard they
try, they cannot do enough. You may experience feelings
similar to that of the patient, such as depression,
sadness, anxiety, and fear. Your life will be disrupted, so
understand that these adjustments represent significant
changes and allow yourself time to come to grips
with them. As you are coping with your own reactions
to the diagnosis of your loved one, you are also being
expected to perform functions that may be new to you.

These changes can cause discord between you and
your spouse, particularly if you are not prepared to talk
about these issues as they arise or if you have had relationship
problems before the diagnosis of cancer. For
many couples, communication could use fine-tuning,
even before a diagnosis of cancer. If you need some
direction on how to begin more open communication
about your spouse’s diagnosis, start by asking your
partner questions about how he or she is feeling (both
physically and emotionally), and how you can help.

For example, you may ask:

• How are you holding up?
• Tell me, what is this really like for you?
• I notice that you have been quiet lately. Do you
mind telling me what you are thinking about?
• I will try to be here for you any way I can. Could
you give me some pointers on ways I can help?

You may want to express your own concerns and feelings
to your spouse also. Couples often want to protect
each other from their feelings, and in essence, put up
an emotional wall. If you take the lead, your spouse
may feel that it is okay to share as well. However,
remember that you do not need to share everything all
the time, particularly if you are not comfortable talking
about your feelings. Find what works for you—do not
force yourself, or your spouse, to talk.

In addition to communicating feelings and needs, you
may consider the following suggestions for how to help
your partner, depending on how he or she is feeling:

• Try not to let the topic of cancer dominate all conversation.
Talk about other things.
• Live life with your spouse. Do enjoyable activities
together.
• Buy a thoughtful gift as a token of your feelings. A
note tucked in a pocket can be an unexpected
reminder that you are thinking about your partner.
• If he or she is agreeable, take on the “public relations”
role by communicating to other people how
your spouse is doing.
• Touch your spouse. Touch is an important part of
intimacy and reassurance, particularly when words
are not enough. Touch is also calming.
• Allow your spouse to feel what he or she is feeling.
If your spouse is feeling down, ask why he or she is
feeling that way, instead of trying to “fix” the problem
immediately or pressuring your spouse to be
more positive.
• Do gently remind your spouse about positive aspects
of life, such as people who love him or her, or
upcoming enjoyable events, like a wedding or party.
• Help your spouse feel less dependent and more in
control. Reassure your spouse that you are fulfilling
your role as caregiver out of love, and try to help
your spouse maintain as much control as possible by
continuing to participate in household decisions,
making social plans, or doing other activities independently
according to how he or she is feeling.

Tip: If you are interested in improving communication,
keep in mind that “forcing” your spouse to talk, or suddenly
changing your methods of communication, may not bring
about the intended result of better communication. Instead,
try asking open-ended questions and listen to what your
spouse says. An open-ended question is one that has to be
answered with more than a simple yes or no. It invites the
respondent to share or explain his or her thoughts.Wait for
the answer. Some people need time to gather their thoughts
before expressing them. Listening is just as important as
talking (sometimes even more so!).