Download A booklet about Multiple Sclerosis for family members

A booklet about Multiple
for family members
Sclerosis
PLAINTALK"
A Booklet About
Multiple Sclerosis
For Family Members
by
Sarah L. Minden, MD
Debra Frankel, MSc, OTR
Cover design by Alfred Wong (416) 424-2680
Multiple Sclerosis Society of Canada
250 Bloor Street East, Suite 1000
Toronto, Ontario M4W 3P9
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INTRODUCTION
Multiple sclerosis affects not only the person with the illness,
but also family members and friends. In this pamphlet we
explore some of the problems families face and describe ways
in which others have handled them. Many chapters of the
Multiple Sclerosis Society of Canada offer support groups
where family members can share their concerns and find
encouragement.
We have designed this pamphlet to be evocative of a meeting of one of these groups. In it, you will find
husbands and wives, children and parents of people with MS,
speaking frankly about the strains and challenges -- and
opportunities -- of living with someone with MS.
NOTE: The questions and comments which follow are typical
of those voiced by families about MS. Just as the experience
of MS itself varies from person to person, so too do the concerns of families in which there is MS. The responses provided are based upon professional advice, published material,
and expert opinion, and do not constitute therapeutic recommendations. The Multiple Sclerosis Society of Canada recommends that families discuss their own particular questions or
concerns about MS with their personal physicians or other
qualified professionals.
WHAT IS MS ?
MS is a disease of the brain and spinal cord (central nervous
system), usually diagnosed between the ages of 20 and 40, in
which the covering of the nerves (myelin sheath) is destroyed
(demyelination).
Like insulation on electrical wires, myelin
insures rapid transmission of nerve impulses from the brain to
move a body part and from the body to the brain to interpret
sensations. When myelin is destroyed the messages are not
transmitted effectively so movement is slow or uncoordinated
and sensation is altered. While at first there may be healing
and return to normal function, later a scar (called a plaque) is
formed which permanently interferes with nerve transmission
and motor or sensory function. Damage to the myelin can
occur at any time and affect any part of the brain or spinal
cord. Because there are multiple areas of scarring (sclerosis)
the disease is called multiple sclerosis. Each person with MS
will have a unique set of symptoms depending on where in the
central nervous system the demyelination occurs: weakness,
numbness, incoordination, loss of balance, visual problems,
loss of bladder or bowel control, difficulty speaking, or dizziness. Fatigue is also a very common symptom.
MS is neither fatal nor contagious. Some very few people
who become bedridden with MS may have a shortened life
expectancy because they develop a serious infection.
DIAGNOSIS
The diagnosis of MS is very difficult. There are no laboratory
tests that prove that someone does or does not have MS. Some
tests like computerized axial tomography (CAT) scans, mag-
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netic resonance imaging (MRI) scans, evoked potentials, and
analysis of cerebrospinal fluid may suggest the diagnosis, but
none is foolproof. A neurologist or other physician will likely
make the diagnosis when there are definite signs of involvement of multiple parts of the central nervous system. This will
usually mean that there has been more than one episode of
neurologic impairment and more than one kind of symptom,
e.g. weakness in one arm AND the other leg, weakness AND
numbness, weakness AND bladder problems. Because some
people may have only a single episode, most physicians are
unwilling to make the diagnosis of MS until there is good
evidence for multiple lesions. While this may lead to long
periods of uncertainty for both patient and physician about
what the symptoms mean, most people will agree that it is best
to be sure of the diagnosis before making it.
WHAT HAPPENS
TO PEOPLE WITH MS?
The course and outcome of the illness depend on how often
there are episodes of demyelination and how much of the brain
and spinal cord are involved in the disease process. About
70% of people have what is called relapsing-remitting MS in
which exacerbations (new symptoms or worsening of old
symptoms) are followed by periods of complete or partial
recovery (remission) while about 30% have symptoms which
continue to worsen without a remission (chronic progressive
MS). Many people think the worst, that everyone with MS
ends up paralyzed in a wheelchair. In fact, only about onethird of people become severely disabled, while one-third have
a mild course with very few restrictions and one-third become
only moderately restricted, needing a cane or crutches to move
about.
WHAT
CA USES MS ?
We don't yet know what causes MS. However, destruction of
myelin seems to be due to an abnormal response of the immune system in which cells that normally protect against
illness react against the body's own tissues (autoimmune
response). A virus or other agent to which an individual is
exposed in childhood might be the trigger for MS later in life.
MS is not a genetically transmitted or inherited disease. There
appears to be, however, a slight genetic susceptibility to the
disease, as evidenced by a small increased risk of MS in close
relatives.
ARE THERE ANY TREATMENTS
FOR MS?
Many people receive medication (e.g. prednisone or ACTH)
for acute exacerbations.
There are also medications that can
give some relief for specific symptoms such as muscle spasms
or incontinence.
Active research has lead to the approval of
beta interferon, which has been shown in clinical trials to slow
the progression of the disease for some people. Investigation
into other possible treatments is continuing at a steady pace.
In addition, general measures such as a nutritious diet, appropriate exercise, and adequate rest are important.
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EARLY DAYS AND DIAGNOSIS
MS IS SO HARD TO DIAGNOSE.t MY WIFE HAD
STRANGE SYMPTOMS THAT NONE OF THE MANY
DOCTORS WE SAW COULD EXPLAIN. THE MORE
SYMPTOMS SHE HAD THE MORE SHE THOUGHT SHE
WAS "GOING CRAZY"
When MS begins dramatically, with loss of vision (optic
neuritis) or paralysis, it is clear something is seriously wrong.
Often, however, early symptoms are mild and transient.
Necrologic examination and laboratory tests may be normal.
The diagnosis may not be made for many months or years.
This discrepancy between a person's experience and what
others see is confusing: people may think the symptoms are
exaggerated or that the patient is anxious or depressed.
WHEN WE FINALLY LEARNED THE DIAGNOSIS
WE FELT
GUILTY BECA USE WE HAD BEEN SO FED UP WITH
DAD'S COMPLAINTS.
Guilt is a common feeling among family members; many
people regret how frustrated or angry they were before the
diagnosis was made. It is a natural mistake to misinterpret
someone's complaints as psychological
if you cannot see
anything wrong with him. Family members should not be so
hard on themselves:
how could they have known what was
wrong when specialists found it difficult to figure it out?
OUR INITIAL REACTION
TO HEARING
DIAGNOSIS
WAS ANGER.
Many people feel intensely
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OUR SON'S
angry when they learn the diagno-
sis. It seems, and is, unfair. Sometimes the anger is directed
against the doctor who made the diagnosis, or against others in
the family. Family members may find themselves quarrelsome, irritable, and full of blame. It takes time for them to
realize that it is the disease they are angry at, not each other,
and to recognize there is a common problem to tackle.
I FELT NOTHING
A T ALL.
i WAS NUMB,
IN SHOCK.
Some people protect themselves from emotional pain by
feeling nothing. Denial of feeling is a normal reaction to
intense emotion that seems too much to handle. It is common
during the first weeks and months after the diagnosis is made.
Over time, people begin to face the realities of the situation.
Denial presents a problem when it interferes with obtaining
appropriate medical care or making necessary life adjustments.
Denial affects both the person with MS and family members.
Each one moves beyond it at his or her own pace.
LIVING WITH MS
MY HUSBAND
DENIES
HIS DISABILITY
BY REFUSING
TO
USE A CANE EVEN THOUGH HE FALLS FREQUENTLY.
THIS IS VERY FR USTRA TING FOR US.
While some people with MS or their families may say that
they know the MS exists, they may act as if they don't believe
it. Going from one physician to another hoping to find out it
isn't so, or trying costly, unproven treatments are forms of
denial.
Refusing
to believe that something
is true is different
from
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hope. Hope involves accepting
outlook and making reasonable
unfortunate
situation.
WHAT WE FIND HARDEST
UNPREDICTABILITY
reality with an optimistic
efforts toward ameliorating
an
TO DEAL WITH IS THE
People with MS never know from day to day, or even from
hour to hour, whether they will feel well or fatigued or weak.
It is typical for MS symptoms to fluctuate: Will the person
with MS be able to join in the family's activities? Will special
help be needed? Will some hoped-for event have to be cancelled? This unpredictability
is frustrating. It can lead to
misunderstanding
and conflict: Is the person really so unwell?
Should he or she be pressed or left alone? It makes it hard to
plan for the future: Should the family buy that new house, or
will there be too many stairs? Will there still be two incomes
with which to meet the mortgage payments?
Should the home
be remodeled now for a wheelchair?
Should the person with
MS stop working? Uncertainty may be easier to live with if it
is expected and planned for. There may be less disappointment when plans fall through if an alternative plan has been
arranged, "just in case."
I GET VERYANGRYAT
HOW THINGS HAVE CHANGED,
BUT I FEEL GUILTY ABOUT MY FEELINGS.
Anger and guilt are two of the most common feelings that
concern families in which there is MS. It is natural to feel
angry about the changes that occur with MS and the demands
the illness places on a family: a drop in income, new responsibilities, changes in traditional roles. These are real practical
and emotional burdens that everyone has a right to be angry
about.
MY WIFE IS SO SELF-CENTRED
AND ANGRY THESE
DAYS THAT IT'S VERY HARD TO LIVE WITH HER.
Some people with MS become so focused on just getting
through each day that they pay less attention to other people.
Their own feelings, thoughts, and body functions become the
objects of their emotional investment rather than their family
members. They may become angry and critical of those
caring for them and believe that the situation would improve
with a different doctor, a better therapist, a more supportive
family. When family members work hard to be sensitive and
helpful to the person with MS, this angry criticism or lack of
interest understandably
provokes disappointment,
hurt, and
anger in return. Understanding
that the feelings of the person
with MS are not uncommon and usually pass with growing
adjustment to the disease can help families take complaints
and disinterest less personally and feel more tolerant. It may
also help to let the person with MS know how the family
member is feeling.
MOST OF THE TIME I DON'T MIND HELPING AT HOME
BUT SOMETIMES
1 CAN'T STAND 1T. ONE DA Y I LOST
MY TEMPER AND TOLD MY MOM THAT I REALLY
HATED HA VING TO DO SO MUCH EXTRA WORK. THEN
1 FELT BADLY THAT 1 YELLED AT HER.
Tension builds when family members fear that the expression
of strong emotion will exacerbate the MS. Holding back
feelings, however, may lead to angry outbursts, avoiding the
person with MS or blaming him for everyone's distress. In the
end, such tension, anger, and loneliness are far more painful
than the natural airing of feelings would have been. Talking
frankly helps family members understand the strain that each
one feels and recognizes each other's needs.
AT SOME POINT I STOPPED BEING ANGRY ALL THE
TIME AND BECAME VERY SAD
Anger may hide feelings of sadness. The many losses from
MS lead to feelings of grief: waves of painful emotion, tears
that seem to come from nowhere and don't stop. There may
be trouble sleeping and disinterest in food or activity. Some
people don't want to be alone, others seek solitude. These
feelings may arise when the diagnosis is made, in anticipation
of what will come, or may be delayed for many years, until
disability has begun to interfere with daily life. When the
grieving process is allowed to follow its natural course, there
usually comes a time when the limitations of the illness are
accepted and energy is renewed for achieving as much satisfaction in life as possible. When grief is stifled, the sufferer
remains stuck in anger and bitterness, unable to move forward
to a more comfortable and adaptive position.
WHEN I LOOK AT MY WIFE 1 FEEL SO HELPLESS.
SOMETIMES I THINK I JUST CAN'T STAND IT ANY
LONGER.
Helplessness is painful. It makes people feel childlike and
weak, frightened and angry. Sometimes people pretend to
themselves that they can stop the MS or could have, if only...
and that makes them feel guilty. Or they try to help too much,
in the wrong ways, at the wrong times. Facing that there are
real limits to how much anyone can do is a fist step toward
recognizing the vital role of family members in helping the
person with MS feel loved and valued and as independent as
possible.
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1 CAN GIVE UP A GREAT DEAL FOR MYHUSBAND,
THEN I REACH A POINT OF BEING ANNOYED.
BUT
It is a paradox, but true, that where people help so much that
they have no time for themselves, they are not really helping
as much as they think they are. Even the strongest person will
at some point feel burdened and angry. He may take out his
frustration on the person he wants to help or become so guilty
and depressed over these natural feelings that he will have
nothing left to give. While it may be difficult, family members need to arrange time for their own activities. Some
communities offer respite services to give families(and people
with MS) a much needed break. Support groups for family
members in which people share information and strategies for
coping can help overcome feelings of isolation. The understanding and guidance of people "in the same boat" can make
a big difference in living with difficult situations. Some
people find that stress management techniques help them cope
more effectively.
WE NEVER SEEM TO GO OUT OR HA VE FRIENDS
ANY MORE.
OVER
When families are overwhelmed
with the care of a chronically
ill person and adjusting to new roles and responsibilities,
they
may have no time or energy for a social life. This can lead to
feeling alone and isolated. Some people think that their
friends don't understand what they are going through. Others
worry that they are so depressed and preoccupied that no one
will want to be with them. Unfortunately,
avoiding friends or
rejecting their help may push them away. While socializing
may be more difficult than it has been, it is an important
source of emotional well-being.
It helps people feel more
"normal" to be with others, to go out and do things together.
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While some friendships may flounder, most remain intact.
Families often come to realize that their friends had not pulled
away, but that they themselves had drawn back from their
friends. Indeed, friends generally welcome learning about
how the person with MS and the family are really feeling; they
appreciate clear and specific instructions about how to help.
WE SEEM TO BE HA VING MORE TROUBLE COPING
NOW THAN WHEN MY HUSBAND WAS FIRST
DIAGNOSED FIVE YEARS AGO.
It is not uncommon for the kinds of stresses and painful
feelings we've been discussing to occur a number of years
after the MS begins. Many people with MS have little wrong
with them at first, and even after a serious relapse may return
to their usual level of functioning. They can get around, work,
participate fully in family and social activities. It is only when
the disease progresses and places limitations on daily functioning that many people begin to recognize how MS has affected
their lives.
I FIND IT DIFFICULT TO DEAL WITH MY HUSBAND'S
LOSS OF SEXUAL FUNCTION.
MS can affect sexual functioning in both men and women. As
with any other chronic illness, sexual desire may fade. In
addition, MS plaques in the spinal cord may interrupt the
pathways for sensation and arousal in men and women and, in
men, for having erections. Like other symptoms, sexual
dysfunction may come and go; this unpredictability makes
most people anxious about sexual involvement. As a result,
they may avoid sex altogether or the anxiety itself may interfere with whatever normal sexual function remains. These
kinds of sexual problems can make the entire marital relation12
ship tense and unhappy. In turn, other stresses may make it
difficult for a couple to feel loving and intimate with each
other. Talking openly about sexual difficulties and working
together to find other ways to give and receive pleasure allow
many couples to have satisfying sexual relationships.
(See
pamphlet: SEXUALITY AND MS.)
WE BOTH WANT TO HA VE A CHILD, BUT 1 AM AFRAID
PREGNANCY
WILL MAKE MY WIFE'S MS WORSE.
Research suggests that pregnancy has no negative effect on the
overall course of the illness although there may be a greater
chance of exacerbation following a pregnancy.
MS does not
appear to affect the developing fetus or to complicate delivery.
Most neurologists would not discourage a couple from having
a child. The major issue is caring for the child should the
parent with MS become too disabled. Such difficulties ought
not to be exaggerated or minimized, but approached realistically. Talking with people who have MS who are raising their
children now can be very helpful.
EVEN THOUGH 1 DON'T HA VE MS, I'VE BEEN QUITE
DEPRESSED.
ALL WE TALK ABOUT ARE DOCTORS AND
MEDICINES.
A RG UMENTS
THERE IS NO FUN ANYMORE,
AND MIS UNDERSTANDINGS.
JUST
Family members can become quite discouraged and depressed.
They, too, have lost a great deal. They may feel helpless and
hopeless, unappreciated
and resentful.
Sometimes family
members feel guilty about seeking help for themselves, believing they should be tougher, or that they don't deserve the
special attention of a counsellor.
But how can a family member be of help to the person with MS if he or she feels beaten
and demoralized'?
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WE CAN NO LONGER SHARE THE INTERESTS AND
LIFESTYLE THAT BROUGHT US TOGETHER.
SOMETIMES I THINK WE'D BOTH BE BETTER OFF
IF WE WERE DIVORCED.
The strains that MS places on a marriage cannot be underestimated. Much of what a couple had planned and worked
toward now seems impossible. Both parties feel cheated.
Some couples adopt goals that are more feasible, and although
disappointment remains, they can achieve these more limited
aspirations. Some spouses, however, find themselves unable
to give up their wishes or change their life styles and seek a
separation or divorce. This, of course, is difficult for everyone. With the help of friends, family, and professionals,
couples often can work out separation agreements that take
into account the emotional and physical needs of both people.
HOWDO 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
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MS may lead a child to think that it is too terrible to talk
about. (See: SOMEONE YOU KNOW HAS MS.)
I KNOW I WILL START TO CRY IF I TELL MY DA UGHTER
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 HOSPITAL
AFTER AN EXACERBATION.
Children's fears often appear as changes in behaviour, 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 concern will change
as he grows and as the MS itself changes.
I KNOW MY DA UGHTER IS HA VING A HARD
IT UPSETS ME TO SEE HOW EMBARRASSED
HER FATHER.
TIME, BUT
SHE IS OF
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
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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 A WAY TO COLLEGE
BECAUSE HE NEEDS TO BE AROUND HOME TO HELP.
Children of families in which there is MS grow up with firsthand 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
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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 ANGR Y ABOUT HIS MS THAT WE
FINALLY ASKED HIM TO SEE A PSYCHIATRIST
FOR
HELP. HE'S BEEN IN THERA P Y 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 counselling before
a crisis develops or the distress becomes overwhelming.
Many
people talk more easily with someone outside the family.
Professional
psychotherapist
(psychiatrists,
psychologists,
or
psychiatric social workers), teachers, and clergy are valuable
resources.
MEMORY, PERSONALITY
DEPRESSION
AND
WE NEVER WENT OUT BECAUSE WE WERE AFRAID
TO LEA VE 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
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"
r"
i
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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 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 behavioural
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 person18
ality 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.
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WHAT DOES THE FUTURE HOLD?
MY WIFE CAN'T WORK ANY LONGER AND WE NEED
HER INCOME TO MEET OUR EXPENSES.
I HA VE 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 Multiple
Sclerosis Society of Canada 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
BE_ER
CARE AND MORE A_ENTION
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
20
alternative.
Guilt, anger, and ambivalence
are
inevitable feelings for the well family members. They may
find support through peer groups or professional counselling.
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 weekend 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
ALL END.
WHERE
THIS WILL
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 1 TALK TO OTHER PEOPLE, IT SEEMS THERE
ARE SOME PROBLEMS
WE HA VE IN COMMON AND
OTHERS
THATARE
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
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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.
22
This publication was developed through the generosity of the
Bafalin Fund of the Massachusetts
Chapter, National Multiple
Sclerosis Society.
ABOUT
THE AUTHORS
Sarah L. Minden, MD is a psychiatrist at the Brigham and
Women's Hospital and Cambridge Hospital, Harvard Medical
School, Boston, MA. She works with persons with MS and
their families and conducts research on the psychological
aspects of MS.
Debra Frankel, MSc, OTR is the Director of Support Services for the Massachusetts
Chapter, National Multiple Sclerosis Society and is a Special Projects Consultant to the National
Society staff. She has authored and edited several publications
about MS in her years with the MS Society.
(Canadian edition translated and printed by the Multiple
Sclerosis Society of Canada. )
23
PUBLICATIONS*
•
MS and Its Effects on You and Those You Love edited
by Deanna Groetzinger, MA, Multiple Sclerosis Society of
Canada
•
Emotional Aspects of MS by Floyd A. Davis, MD et al,
National Multiple Sclerosis Society
•
Sexuality and Multiple Sclerosis by Michael Barrett, PhD,
Multiple Sclerosis Society of Canada
•
Coping with Fatigue in MS by Alexander Burnfield MB,
MRC Psych.
•
Understanding Bladder Dysfunction by Nancy J.
Holland, RN, MA, and Michele G. Madonna, RN, MA,
National Multiple Sclerosis Society
•
Healthy Eating by Erla Wankling, RD, and Doreen
Abbott, PHEc, Multiple Sclerosis Society of Canada
•
Pain and Multiple Sclerosis, National Multiple Sclerosis
Society
•
Becoming A Parent by Adele Sadovnick, PhD, Multiple
Sclerosis Society of Canada
•
Someone You Know Has Multiple Sclerosis by Patricia
Dick et al, National Multiple Sclerosis Society
•
Doctor-patient dilemmas in multiple sclerosis by Alexander
Burnfield MB, MRC Psych.
• You and Your Family Physician by Ruth Sky, MD, FCFP
* Available from the Multiple Sclerosis Society of Canada national
office or your local MS Society chapter.
24
Multiple Sclerosis Society of Canada
Division Offices
Atlantic Division
71 Ilsley Avenue, Unit 12
Dartmouth, NS B3B IL5
(902) 468-8230
Saskatchewan Division
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Regina, SK S4R 2N2
(306) 522-5600
Quebec Division
666 Sherbrooke St. W., Suite 1500
Montreal, QC H3A I E7
(514) 849-7591
Alberta Division
10104 - 79th St.
Edmonton, AB T6A 3G3
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Ontario Division
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Toronto, ON M4W 3P9
(416) 922-6065
British Columbia Division
II 30 West Pender St, Suite 1600
Vancouver, BC V6E 4A4
(604) 689-3 !44
ManitobaDivision
141 Bannatyne Ave., Suite 400
Winnipeg, MB R3B 0R3
(204)943-9595
NationalOffice
250 Bloor St. E., Suite 1000
Toronto, ON M4W 3P9
(416)922-6(165
Call toll-free in Canada
1 800 268-7582
http://www.mssociety.ca
[email protected]
25
A CKNO WLEDGEMENTS
The authors wish to acknowledge the following persons who
contributed to this booklet: Beveley Brown RN, MEd; Pam
Cavallo, MSW; Linda Samuel, MSW; David Luterman, DEd;
Joyce Rich, MSW; James Lehrich, MD; H. Richard Tyler,
MD; Lynn Stazzone, RN; James E. Miller, PhD. The original
booklet was designed by Diane Fiedler, Boston, MA.
© 1987 Massachussetts
Chapter
National Multiple Sclerosis Society
400-1 Totten Pond Road
Waltham,
MA 02154
1992, updated and reprinted
Multiple Sclerosis Society of Canada
MS
Multiple Sclerosis Society of Canada
250 BIoor St. E., Suite 1000
Toronto, Ont. M4W 3P9
C31E 12/00
(Disponible
en franqais)