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That was the start of a steady deterioration. Slim to
begin with, he lost his appetite and a lot of weight. He had difficulty
sleeping, became a recluse in his apartment, felt compelled to walk many miles
a late at night, and lost any interest in personal hygiene. He grew to distrust
his family even though we had always had a close
relationship.
During this period, we started searching for answers to
our many questions. I met with a family practice physician who referred me to
the county mental health professional in the area that my son lived. I also
visited the local police department, informally, to ask about their policy of
responding to situations that may involve mental health
issues.
Because our son continued to refuse help from any source,
and was of legal age, our hands were figuratively speaking "legally tied". We
continued to be with him when he would allow it, praying for a miraculous
recovery or a situation to develop that would provide the support to officials
that indeed he must have help immediately. Help in the form of a proper
diagnosis, medical attention, and a safe environment.
It was a long and agonizing wait--six months! Too many
nights of going to bed, exhausted but unable to sleep because of worry. Is he
safe? Is he eating?
Is he tormented because of hallucinations and delusions?
Will an opportunity come to get him the help he so desperately needs without
that situation causing him irreparable harm, injury, or
death?
Now, four years have passed. We did get that opportunity
to get him the help he needed. His diagnosis was Schizophrenia. His hospital
stay was four to five months. His initial response to our intervention was
anger and denial. By the time he was well enough to know that he was ill, his
response to us was "Thank you for saving my life."
In four years time, we have replayed the above scenario
three more times. The sad fact is that many individuals with brain disease stop
taking their medication after they start feeling better. We hope that there
will be no more onset of the illness. We are experienced enough though to
realize that if there are, we will do everything within our power to help
effectively.
Our son is learning to live with the undeniable fact that
he has Schizophrenia. It is not something he would choose for his life and not
of his making. His family is proud of him. It takes courage, daily perseverance
and hard work to continue to gain back the ground that he temporarily loses
from recurrence of the symptoms, and then another push forward to plan and
dream for the future.
The following will hopefully be of help to any family who
is newly faced with learning to live with the effects of mental illness. It is
not meant to be professional advice but only ideas that have worked for our
family in dealing with the every day aspect of continuing on with life. Feel
free to try any that make sense in your particular family
arrangement.
When you have a
mental health concern for a loved one:
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1. |
Get them
into see a doctor. Your family physician would be a good starting point to
verify that your concerns have some validity. As with all illnesses, the
earlier the treatment, the faster and easier the recovery may be. Also, your
loved one may be more agreeable to treatment in these early
stages. |
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2. |
Get
knowledge fast! Call your community mental health center. Find our what
resources they have available. Learn the warning signs. Like any other illness,
there are symptoms common to that particular disease. |
|
3. |
If your
loved one is resistant to medical assistant, start a journal. Record and date
your observations In detail. You will probably see a pattern developing. In the
future, there may come a time when you will need proceed with an involuntary
commitment in order to start the medical support he/she needs. You will have an
easier time supporting why this person needs help even though they do not ask
for it for themselves, or refuse it all together, by having some sort of
documentation ahead of time. Ask others who have witnessed ahead any
symptomatic behaviors to prepare a written statement. |
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4. |
Be there
for your loved ones during the crisis. The behavior and thought processes may
be untypical so it may uncomfortable at first. Work through it. This is not
intentional on their part. It is a symptom of the illness. When or if
hospitalization is necessary--if at all possible, visit consistently. It
doesn't need to be daily, and short ones seem to work the best. Even though, at
first, your visits don't seem appreciated--GO! We have sat in the visiting room
while our son was angry and refused to speak to us, and we have been there when
he cried in our arms. The emotional reaction may very well be different every
time you visit, but your show of caring and support is invaluable to them.
Also, provide something to look forward to upon release. It helps them hold on.
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5. |
Be there
for your loved one after the crisis too! Don't allow their illness to become
the focal point of your relationship with them. Focus on quality time together.
Share a meal do a few light chores or go for a walk. Share a sunset and a hug,
a non-threatening movie or music. Relaxed conversation, sharing of pleasant
thoughts--All lead to building back trust. Having enough social contract with
other people they feel comfortable with is an important part of recovery. As
with any relationship, it won't always be warm and cozy. Talk about problems.
Reach compromises. Set limits to acceptable behaviors that are within their
control. If they are not being compliant with their medications, use whatever
tools you have. It may be positive reinforcement such as praise or rewarding
certain behaviors. It may be coercion--taking away benefits that are valued by
your loved one and that are legitimately and safely within you power to
withhold. |
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6. |
Learn to
slow down and simplify. Thought processing can be difficult for your loved one
due to the disease. Too much stimuli coming in all at once so processing all
the information correctly in order to make a decision may be more difficult and
exhausting. When giving directions, give only one or two at a time. Have eye
contact while talking without a lot of gesturing and other nonverbal
communication going on at the same giving directions, give only one or two at a
time.
Have eye
contact while talking without a lot of gesturing and other nonverbal
communication going on at the same giving directions, give only one or two at a
time. Create a calm, safe environment and provide them a quiet place to rest
when needed. |
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7. |
Encourage
without undue pressure to recover and move on at a faster rate than they feel
comfortable with or can manage. Acknowledge and respect the effort they are
making to live with this disease. Praise them for the little steps taken. Stay
away from prolonged sorrow, guilt, resentment, etc. There is no place for that
here. |
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8. |
Allow and
encourage them to develop their independence. Mental illness is not fatal. Most
can expect to live a normal life span with proper medical treatment. But when
it strikes someone at a young age, it can present some major obstacles.
Independent living skills are not yet developed and formal education not yet
complete. How are the skills to do it going to be attained? How are close
friendships going to be maintained when friends zoom by you in their rapid and
successful development? How does one handle growth in important areas of their
life, in these few critical years and learn the coping skills needed for their
illness at the same time? Encourage your one to work with the mental health
professionals who will assist in tailoring a medical and therapy program that
can work for your loved one. They need to learn to develop a social network
outside of the immediate family. Mom and Dad will not live forever, and
siblings may not be available in the future. When safe to do so, learn to say
no. "I can't do this for you. You need to learn to do it for
yourself". |
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9. |
Reach out
for support! There are a number of educational opportunities for family members
out there. Talk to your local community mental health center for information on
support groups. Other who have faced what is so new to you have a wealth of
knowledge and understanding of what you are going through. |
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10. |
Maintain
as normal a lifestyle as possible. There is work to be done, bills to be paid,
relationship with friends and other family members to maintain. Don't let the
illness dominate your life and rob you and other family members from having
their time to pursue what is important to them. Siblings need to feel that they
are just as much loved and thought about as their brother or sister who is ill.
Talking openly with family and friends about your family member and the effect
of mental illness on your loved one’s life and your own is important but
must not dominate. In crisis, it may for a time. You will need to be there, as
you would be for any family or friend who has a bad bout with an illness. Don't
allow it to become primary in your relationships. |
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11. |
Develop
inner peace and strength. There will be times when every bit counts. Seek
counseling for you and other family members if you feel it would be useful.
Learn to accept, deal with as positively as you can, and move forward. Lighten
up! Laugh and love, work and play. The entire family gains from learning to fit
the mental illness into a sense of proportion in their lives. |
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12. |
Become an
advocate. As your loved one moves through the system, whether public or
private, you will become aware of where the system is weak or unfair. Get
involved! Add you voice to the voices of others who, through no choice of their
own become intimately involved with living with mental illness. Those voices
need to be heard to make a difference in the level of services available to our
loved ones. We need better housing and more funds for medical and social
services. We need a change in the involuntary commitment laws to allow earlier
intervention, proper and consistent medical care, therapy to assist with
personal development and achievement of realistic goals, our loved ones can
enjoy rewarding lives as part of the mainstream of our society. |
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