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Changes
& Roles
INTRODUCTION
Your
family life has probably changed and will continue to change.
Routines that seemed permanent have become disrupted and
MS is now the focus of attention.
A serious
illness can affect a family in one of two ways. It can make
everyone much closer, part of a strong family unit, loving
and sharing emotions freely, or each person can remain isolated
in his or her own space and grow further and further apart.
If you
sense that your family is drifting apart, share your concerns
with your parent(s). Explain how isolated you feel and how
you really need them. Even if they don't respond right away,
keep reaching out to them and offering your love and support.
They need some time to process and analyze the situation
and come up with some possible solutions. The fact that
you came to them is the first step in dealing with the situation.
NEW RESPONSIBILITIES
There
probably will be many changes in your family's routine.
Everyone may have to pitch in on a regular basis. You may
find that you are now asked to do a number of chores, like
laundry, cooking, or shopping. These added responsibilities
might diminish your amount of personal free time. You may
feel that a lot of responsibility has been thrust upon you,
which may leave you feeling overwhelmed. As a result you
may feel resentful. It may seem that tasks have not been
divided up equally or that you are expected to do more than
you feel is fair. You should try to remain objective about
the situation; family life is changed; no one has asked
for this, but in order to move forward, everyone in the
family needs to band together and do the things that need
to get done.
It is
important for you to remember that although you do have
new responsibilities, you still need to make time for yourself,
friends, and schoolwork. Here's what some young people say:
Friends play a major role in my life. They're there when
I need them and I can confide in them. I know that whatever
happens, I can always count on them.
Nadine, 16 years old
My friends let me unwind, forget and talk about things.
Bianca, 19 years old
Last year I had a friend who was my best friend. We talked
about everything: good times, bad times, our parents. He
understood me. I could tell him a lot of things. He knew
what I was thinking about.
Marc, 12 years old
HOW
YOU SEE YOUR PARENTS
As a
child, you thought your parents were perfect. Now that you
are getting older you may become more aware and critical
of their faults. Your parents may seem to be unsure of themselves
in dealing with life after a diagnosis of MS. They may be
focusing all their time and energy on the changes in their
lives, making them appear isolated.
It is
important for you to realize and accept that your parents
are human and that they experience similar troubles and
frustrations to yours. Judging them harshly could leave
you feeling isolated from them. Try to reach out, even if
you don't have answers - a hug, unexpectedly preparing a
meal, or doing an errand you haven't been asked to do, are
ways of showing that you care and understand.
Your parent's situation may change, but whatever the change
may be, try to make the best of it. Make a conscious effort
to focus on what your parent can do, not what they cannot.
FRIENDSHIPS
& RELATIONSHIPS
You
and your parents need the support of good friends, now more
than ever. You will find that not every one of your friends
will live up to your expectations. Some of your friendships
may become stronger while others could fall apart. Following
the diagnosis of your parent's MS you may feel a little
uncomfortable around your friends. Some friends may at first
want to support you and learn more about the disease, but
later they may tire of the situation and pull away from
you. Other friends may be uncomfortable with your new situation
and avoid you at all costs by making excuses for not getting
together. Try to accept the situation and move on. True
friends are ones who you can trust and respect and who can
deal with your situation.
CHANGES
Moodiness
and depression are common in people coping with MS. If your
parent was already somewhat moody, or had bouts of depression
before the diagnosis of MS, you might find them to be exaggerated
now.
When your parent has been ill for a while, you may notice
some other behavioural differences that you are sure are
new. You may be right. MS affects people in many ways. Some
are quite obvious, while others are more subtle, but knowing
your parent the way you do, you can see the change. These
behavioural changes are caused by demyelination. Some of
the things you might notice include:
-
Your parent repeats himself/herself
-
Your parent has trouble coming up with the appropriate
word
-
Your parent is inappropriately happy or optimistic when
things are actually bleak
-
Your parent does or says something you consider inappropriate
Other
changes may make your parent more difficult to live with.
For both the person with MS and the people around them,
problems affecting the mind often cause more distress than
the changes to the body.
These difficulties can be influenced by sleep disruptions,
tension, depression, stress and fatigue, so they may change
from day to day. Your parent may experience other mental
or emotional problems, such as inability to concentrate,
loss of organizational skills, rapid mood changes, poor
short-term memory and faulty decision-solving and decision-making.
There
are some simple things you can do to help with some of these
issues. They will reduce the tension of having to repeat
things and remind your parent of activities, and will empower
them to continue to live as independently as possible.
What
you and your family can do to help:
-
Set up a family calendar to track everyone's commitments
- Get
a loose leaf binder for your parent to use to record appointments,
phone numbers, driving directions, to-do lists - anything
they might forget.
- Encourage
family members to return objects to their proper spots.
For example, the scissors always go in the top desk drawer.
- Get
your parent a personal organizer that can fit into a pocket
or a purse.
- Encourage
your parent to seek professional assistance.
Your
local library will have books on memory and organizing time
that should offer some good tips on methods you could try.
Above all, try to be patient, and remember that this is
hard for your parent as well. They aren't doing it to annoy
you and they will benefit from your encouragement and support.
LEAVING HOME
Eventually
it will be time for you to move out, whether to go to university,
or just to have your own space. You may feel torn between
your needs and your responsibilities at your family home,
however, you must look after yourself and ensure that your
needs are met.
You
are not abandoning your parents, but rather making an important
and necessary life change for yourself. This time of change
is difficult for any parent, whether they have a chronic
illness or not, and it may cause temporary tension between
you and your parent. Remain firm in your decision and maintain
your sympathetic attitude; your parent will probably adjust
to your decision and support your need for independence.
The changes you are experiencing will help you develop into
a mature, responsible adult and provide you with the tools
and experiences to deal with the ups and downs of life.
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