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PLAINTALK FOR THE FAMILY, PART II
Copyright 1993 National Multiple Sclerosis Society
by Sarah L. Minden, M.D. & Debra Frankel, MS, OTR

How do we talk with our children?

Our biggest problem has always been what to tell our children. . . .

Even very young children notice slight physical changes in Mom or
Dad. They readily pick up the emotional distress that their
parents feel. Children may not express their worries openly and
should be encouraged to share what they are thinking. This gives
their parents an opportunity to clear up misconceptions and offer
reassurance.

Avoiding talking about MS may lead a child to think that it is
too terrible to talk about.

I know I will start to cry if I tell my daughter what's wrong
with my wife. . . .

It is not harmful for a child to see a parent's genuine feelings.
While it is inappropriate to burden children with adult problems,
honest expression of sadness, frustration or anger makes it clear
that such emotions are normal and acceptable. This also may help
a child be more willing to talk about his or her own feelings.

Our son began to do poorly in school shortly after my wife
returned home from the hospital after an exacerbation. . . .

Children's fears often appear as changes in behavior, withdrawal
from family and friends, poor school work, and aggression. Where
the home atmosphere is one in which thoughts and feelings are
shared and questions are answered honestly, a child can turn to
his parents for help with his worries about MS. This is an
ongoing process: a child's concerns will change as he grows and
as the MS itself changes.

I know my daughter is having a hard time, but it upsets me
to see how embarrassed she is about her father. . . .

Many older children and teenagers appear to be embarrassed by
their parents. When a parent has MS, and may stumble or use a
cane, these feelings are intensified. Children may worry that
their friends think less of them because of their parent's
disability.

This embarrassment, at times, is an indirect way of expressing
fear, sadness, and anger. With help, perhaps by more directly
expressing the underlying feelings, children can see more clearly
the qualities of their parent that make them proud.

My son says he cannot go away to college because he needs to be
around home to help. . . .

Children of families in which there is MS grow up with first-hand
experience of what it means to be ill and disabled. Many become
unusually aware of the feelings and needs of others. These
valuable qualities, however, may make some children feel selfish
if they seek their own goals.

Children may need encouragement to balance their wishes to be
helpful with their equally important desires and needs to have
lives of their own. Some children who try too hard to help or are
"too good" may be worried that they have done something to cause
the MS. They need help to resolve this underlying fear.

The Well Parent

As parents we feel torn between wanting to do everything we can
for our daughter and knowing she has to learn to do things for
herself. . . .

It is hard for the parents of young adults with MS not to be
overly protective. It is terribly painful to see one's child
become disabled and to face the likelihood that he or she will
not have the kind of life you had dreamed of.

Parents inevitably worry about who will care for their child
when they are gone. But if parents, out of love and concern, do
more for their child than is absolutely required, then there will
be no opportunity for the child to develop his or her abilities
or to create a life of his or her own. Sometimes it is more
helpful to be less helpful!

Our son was so angry about his ms that we finally asked him to
see a psychiatrist for help. He's been in therapy for a few
months now and seems much happier. . . .

If someone needs professional help, it does not mean that the
family has failed. In fact, it is best to seek counseling before
a crisis develops or the distress becomes overwhelming. Many
people talk more easily with someone outside the family.

Professional psychotherapists (psychiatrists, psychologists, or
psychiatric social workers), teachers, and clergy are valuable
resources.

Memory, Personality, and Depression

We never went out because we were afraid to leave our mother
alone. She was so forgetful. . . .

It used to be thought that MS does not affect mental or cognitive
functioning. This has confused family members who have noticed
the person with MS becoming forgetful or acting in unusual ways.
As we learn more about MS, we find that some people, to varying
degrees, do have trouble with their memory.

They typically forget recent events, but remember information
they have known for many years. Some people lose their tempers
more easily while others become less mentally active and less
interested in what goes on around them.

Some people seem less concerned about social norms or may be less
organized. While many people with MS do not experience any of
these mental or personality changes, it is important to recognize
the problem if it develops and seek professional help.

Discuss the symptoms with your neurologist and ask if a
consultation with a neuropsychologist would be appropriate. After
thoroughly testing cognitive functioning, a neuropsychologist can
recommend strategies for both the patient and family that may
make limitations less troublesome.

There are many useful rehabilitation approaches for these
problems. It is crucial to remember that these types of
behavioral changes are beyond the control of the person with MS.
They are the result of MS plaques in areas of the brain that
affect emotions and behavior. Just as a person with MS may not
walk well, he may be forgetful or behave differently.

I don't understand how my wife can seem so cheerful when she is
so disabled. . . .

In some people, MS produces a surprising lack of concern about
their illness. This is called euphoria. In spite of severe
disabilities, they appear cheerful. Sometimes, this is how they
really feel. However, sometimes people will say they feel very
sad and worried "inside" even though they seem happy on the
"outside." For family members, this discrepancy may be confusing
and may make it hard to respond empathically.

We couldn't tell if my husband was depressed or losing his mental
sharpness. . . .

While it is often difficult to distinguish cognitive and
personality changes from depression it is important to try to do
so because the treatments for depression and for changes in
mental functioning are very different.
 

Depression can make people disinterested, fatigued, withdrawn,
and irritable; it can itself affect concentration and memory. A
psychiatrist can determine the seriousness of a depression and
whether or not psychotherapy or antidepressant medication would
be beneficial.

Many people are reluctant to see a psychiatrist and may miss this
opportunity for help. Almost everyone with MS is depressed at
some time. For some people depression is mild and passes quickly.

It is similar to the grief of losing a loved one, and the
support of friends and family helps the person through. For
others, depression is a much more serious problem. The distress
lasts for a long time, affects their sleeping and eating, and
interferes with work, family, and social relationships. Some
people may think life is not worth living.

Some individuals may even consider suicide. These more serious
depressions can often be alleviated by talking about the problem
and by appropriate medications. Sometimes people are depressed
without calling it depression; they may feel so ashamed that they
try to hide their feelings.

Clues to an underlying depression may be changes in eating and
sleeping, loss of interest in former activities and people, and
irritability. People who have had depressions before the MS began
or who have family members who have been depressed may be more at
risk for becoming seriously depressed.

What Does The Future Hold?

My wife can't work any longer and we need her income to meet our
expenses. I have taken a second job now, but who will make dinner
and watch the kids in the evening? We don't have any family close
by and we can't afford to pay anyone. . . .

MS can put enormous financial burdens on a family. Not only may
an important source of income be lost, but the costs of medical
care, transportation, home health services, and child care can be
overwhelming.

Financial change involves major decisions: Should the family move
to less expensive housing? Should the healthy partner take
on a second job? Should a loan be sought or should the children
be asked to take jobs? Should the family deplete its financial
resources in order to qualify for government assistance programs?

While there are no easy solutions, health and social service
agencies, lawyers and financial planners, and local chapters of
the National Multiple Sclerosis Society are excellent sources of
information.

My husband now needs a lot more help, but since we depend on my
income, I can't stay home to care for him. Perhaps he will get
better care and more attention in a nursing home. . . .

Decisions about the appropriate level of care for a severely
disabled person may be extremely painful. No one wants a loved
one to live in an institution, but sometimes this is the only
reasonable alternative.

Guilt, anger, and ambivalence are inevitable feelings for the
well family members. They may find support through peer groups or
professional counseling. Many people have misconceptions about
nursing homes.

Visiting and talking to the staff and residents at several
facilities may help dispel myths. Finding a nursing home near the
family will make it easier, and home visits over weekends may be
arranged.

While nursing homes are not designed for younger persons, some do
make special efforts to accommodate them. Families should explore
carefully the resources in their community to find the home that
best meets their needs.

Every so often I wonder where this will all end. . . .

Many people worry about the future. They find themselves thinking
about wheelchairs and nursing homes and financial disaster. It is
normal both to have pessimistic thoughts, and to think about how
to handle such situations.

But when bleak fantasies are too frequent and persistent or out
of line with reality, they produce needless unhappiness. It is
important to remember that most people do not have the most
severe type of MS.

It may be helpful to talk with your neurologist to form a
realistic picture of the present situation. While no one can
predict the future, your neurologist may be able to tell you
about his or her experience with patients in a similar condition.

Keeping one's worries to oneself only makes things worse. Sharing
them will help achieve a balanced perspective.

When I talk to other people, it seems there are some problems we
have in common and others that are unique to each one of us. . .
.

In some ways families coping with MS are very similar. They have
the same practical and financial burdens to bear, and undergo the
same emotional reactions of anger, sadness, and guilt. Families
at the same developmental stage share similar difficulties. A
young couple just starting out wonders about having children or
staying together at all.

Couples with young children have to help their children adjust to
a disabled parent. An older couple has to find new ways to enjoy
their leisure years. At the same time each family has its own
particular stresses and styles of coping.

Some couples split up, earlier or later, either because they
cannot resolve their problems or because they choose this as the
most reasonable course of action.

Some families stay in a chronic state of unhappiness,
frustration, and loneliness. Others, on their own or with
professional help, find a way to make up for what is lost.

They are able to talk about painful feelings--anger, hurt,
sadness -- and bring grievances into the open. They are able to
identify problems in the family, both practical and emotional,
and to tackle them with a sense of competency and hope.

They are able to find ways to help without doing too much for the
person with MS, and to take time for themselves without feeling
guilty. Perhaps the most important feature of this ideal family
is that the members talk openly with one another and show respect
for each other's feelings and wishes.

They also recognize that many of life's problems have nothing at
all to do with MS.

About the Authors

Sarah L. Minden, MD is a psychiatrist at The Brigham and Women's
Hospital and Cambridge Hospital, Harvard Medical School, Boston,
Massachusetts. She works with persons with MS and their families
and conducts research on the psychological aspects of MS.

Debra Frankel, MS, OTR is the Special Projects Manager for the
Massachusetts Chapter of the National Multiple Sclerosis Society.
She has authored and edited several publications about MS in her
thirteen years with the MS Society.

This publication was developed through the generosity of the
Bafalin Fund of the Massachusetts Chapter, National Multiple
Sclerosis Society.

Printing and distribution costs were assumed by the National
Multiple Sclerosis Society.

Acknowledgements

The authors wish to acknowledge the following persons who
contributed to this booklet: Beverly Brown, RN, M.Ed; Pam
Cavallo, MSW; Linda Samuel, MSW; James Lehrich, MD; H. Richard
Tyler, MD; Lynn Stazzone, RN; James E. Miller, Ph.D.

Copyright, 1987 Massachusetts Chapter, National Multiple
Sclerosis Society, 400-1 Totten Pond Road, Waltham, Ma., 02154,
Revised 1992.

DISCLAIMER: The National Multiple Sclerosis Society is proud to
be a source of information about multiple sclerosis. Our comments
are based on professional advice, published experience and expert
opinion, but do not represent therapeutic recommendations or
prescription. For specific information and advice, consult your
personal physician.

Transmitted:  94-04-21 08:51:12 EDT

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