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Given the wide variety
of material available at the ROH Patient and Family Resource Centre,
I often drop by to see what’s new. Months ago, a book by Mona Wasow
caught my attention and I found it so interesting that I borrowed it
again! Not only does The Skipping Stone, Ripple Effects of
Mental Illness on the Family, fulfill its promise by providing
the reader with different perspectives of how other family members
cope with mental illness, but it also offers insightful information
and practical coping strategies. The author said that her
“intention is to find one voice for all. And with that one voice,
may we show mercy toward all – because this is a lonely journey, and
we need other.”
This book is intended
not only for family members, but also for professionals. The
stories it tells will move you. You’ll recognize them as quite
simply the family’s cry from the heart for better
communication,
more information and involvement from doctors and social workers
alike. The literature review and results of the interviews provide
the reader with a more comprehensive understanding of the impact of
mental illness on the whole family and consequently how to
incorporate the lessons learned into the treatment process.
Although I can’t
possibly do The Skipping Stone justice, I did want to give
you a brief glimpse of the author’s work. The observations gathered
in the book were based on a review of literature and on two-hour
interviews with family members, all of whom were volunteers.
Here then are different
perspectives on having a family member with a severe mental illness
(SMI):
Children
Children
of parents with SMI spoke about a sense of having no control over
their lives'
circumstances and of having no time for childhood because they had
to grow up fast. They experienced role confusion or role reversal
with the SMI parent, loneliness and anger, coupled with fears of
inheriting the illness. Survival attributes that helped children
cope include: high intelligence, outside interests and significant
other adults who helped with childcare. Children tend to take on
some idiosyncratic roles in response to parental mental illness.
These roles include becoming a caretaker; regressing to a clinging
or whining state or developing separation anxieties; or mourning by
demonstrating prolonged grief or becoming depressed. Important
points to consider:
-
Children need
adequate substitute childcare.
-
Children need to be
told, repeatedly, that they are not to blame for the parent’s
illness.
-
Children need
on-going education about SMI and reassurance until such a time
that they can continue to learn on their own. They need
guidance in learning new ways to think about and cope with the
parent with SMI.
-
Children need
encouragement and support for interests and activities outside
the home. Children with a strong interest in something outside
the family seemed to derive solace, satisfaction and a healthy
escape from their troubles.
Siblings
In siblings,
the feelings of sadness, loss and intensive suffering consistently
emerged. Siblings had a desire to be heard, genetic fears for
either themselves or their children, and a need for information
about the mental illness.
For many of the
interviewees’ parents, the disabled child and his needs became
almost an obsession; any family gatherings became consumed by talk
about the mentally ill child and his
or her
problems, living
arrangements, treatments, accomplishments, and failures. These
families often minimized the feelings and experiences of the well
siblings, who came to believe that their needs were irrelevant.
Some siblings experienced survivor’s guilt – they knew their lives
were better than their siblings, so how could they complain? Their
response was to keep silent, not to say anything that would upset
the parents further, so avoiding the topic of their sibling’s
illness altogether seemed like the solution.
In the first stages of
coping, interviewees expressed confusion, chaos, denial, a desire to
escape, secrecy and shame. Those who were beyond the first stages
of coping were over 30 years old and were owning up to the full
impact of their sadness and grieving, and expressed more
acceptance. They were coming to grips with their probable future
roles as caretakers after their parents’ deaths.
Coping involved the
desire to escape the pain and loss, and sometimes to continue the
secrecy. Some escaped into drugs and alcohol. Searching for
answers, treatments, cures and miracles were other coping
mechanisms. Another was guilt and a way to alleviate it was to take
on extra household responsibilities or pitching in during times of
crisis.
The more knowledge
siblings had about the illness, the better their coping skills.
Most described being neglected by professionals.
The author listed
things to consider when working with siblings. Some of these are:
-
Does the well
sibling understand the diagnosis of the ill relative, the nature
of the illness, the unpredictability of its course, the causes
of the illness?
-
What questions does
the sibling have (make articles and books available, the younger
the sibling the more you need to follow up)?
-
How is the well
sibling fitting in the family? Are enough of his own needs
being met? How do they envision their futures in terms of
responsibility for the ill sibling?
-
Is the well sibling
worried about the rest of the family? Does the sibling have any
genetic concerns?
Spouses
A well spouse faces
emotional and financial loss, deals with a double workload, daily
anxiety and stress, loss of pleasure, an overload of responsibility,
single parenting, and reduced social contacts (social isolation and
little support from friends because friends tend to drop away).
One spouse said that
other people who have “normal” illnesses in their families receive
neighborhood sympathy, support from their church, and food to eat
while an ill spouse is in the hospital – not so when mental illness
is involved.
Common complaints
include ignorance on the part of professionals, hiding behind
doctor-patient confidentiality and not giving well spouses
information or counsel, and not helping well spouses work the legal
system on behalf of either themselves or their ill spouses. They
also said that lawyers need to understand the illness and not get
fooled by the ill spouse. An example is understanding the wild
spending spree of someone experiencing a manic episode – in that
case, the spree is a symptom of the illness and the spouse who is
trying to control the damage is not a greedy human being but someone
seeking help before the family goes bankrupt.
When SMI spouses have
predominantly positive symptoms (hallucinations or delusions), their
partners are significantly happier with their marriages than those
married to patients with predominantly negative symptoms (depression
or lack of interest). Since people with positive symptoms usually
have much poorer levels of overall functioning, the implication is
that the passivity and withdrawal of negative symptoms are even
harder to live with than the disruption caused by florid positive
symptoms.
Grandparents/Extended Family Members
Many grandparents
talked of the “triple whammy” – they expressed a feeling of loss for
themselves, their own child and their grandchild. Depending on the
age, grandparents varied in wanting information or education on the
illness. Many said the illness brought them closer to their child.
Little attention seems
to have been given to the extended family so there’s not much
literature on this. Many members of the extended family were
willing and able to give direct care to their SMI relatives and
others were supportive without being involved directly. The
extended family was more apt to stay involved when the SMI relative
was comparatively easy to manage rather than difficult and/or
violent.
The Skipping Stone
offers much more than what is presented here. As symptoms of mental
illness evolves, coping strategies must be adapted to meet the
changing needs. The section on Control and Coping will help you
increase your coping strategies and is well worth reading.
-
Madeleine Bertrand
This review was originally published in the
Schizophrenia Society of Ontario, Ottawa Chapter's Newsletter in
November 2000.
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