AAMFT Consumer Update
Chronic
Illness
Approximately 35.3 million
Americans, young and old, are limited in their daily functioning because of a
chronic mental health or physical health condition. For the vast majority of
these individuals, family is their first line of healthcare. Whether the member
is a child with cystic fibrosis or an adolescent with diabetes, or a parent
with multiple sclerosis or a grand parent with Alzheimer’s disease, it is the
family, first and foremost, that cares for an ill loved one.
One member’s
chronic illness influences the lives of everyone in the family. Roles and
routines change. It may seem as if the medical professionals that care for the
ill family member become part of the family. The demands of caregiving must be
negotiated. Family members’ emotions may be on a continuous roller-coaster
ride. On the other hand, families may come together and grow closer. Their
lives may take on new meaning. They may find rewards they had not expected on
their journey through illness. The only certain thing is that chronic illness
is a family experience, one that is shared by all.
How
can chronic illness affect the family?
There are several
ways that chronic illness can influence family life:
·
Daily routines may change because the limitations of the ill member and
the demands of treatment may require that others be more available.
·
Families may need to share caregiving responsibilities; this helps all
members feel they are contributing to a loved one’s welfare and it also
protects any single member from caregiver fatigue.
·
Family members may experience strong emotions, such as guilt, anger,
sadness, fear, anxiety and depressed mood. These are normal reactions to
stress. It is useful to talk about these emotions within the family.
·
The ill member may need to find ways to be as independent as possible,
given the limitations that the illness causes.
·
Despite the demands of the illness, families may need to work hard to
maintain a sense of "normal" life. This can benefit the ill member,
as well; it may help him or her integrate into family life more and may reduce
the ill member’s sense of guilt regarding the demands the illness places on the
family as a whole.
When
should the family seek help?
At any time during
the life of a chronic illness, family members or the family as a whole may need
support from a trained professional, such as a Marriage and Family Therapist
(MFT). Signs to watch for include:
- Difficulty making the transition from the
demands of one phase of an illness to another.
For example,
family members may remain overprotective of the ill member long past the crisis
phase. The ill member may feel he or she is being overly controlled and may
rebel by not complying with treatment or medication, or becoming angry with
family.
·
Evidence of caregiver burnout.
Oftentimes, caregiving
falls to a female member of the family who may become exhausted by the 24 hour
per day demands of the illness. The primary caregiver may be hesitant to ask
for help, feeling that it is her responsibility. But she may also show signs
that may be a call for help: sustained exhaustion, shortness of temper,
depressed mood, loss of interest in daily activities, and changes in sleep or
eating. These may indicate that the caregiver needs more support and the family
needs to become more involved in caregiving.
·
Changes in the ill family member.
These changes may
be related to illness or personality changes in the ill member. A sudden
decline in the health status of the ill member may send shock waves through the
family. The ill member may also experience periods of depression, even thoughts
of suicide, which are common with persistent illness.
·
Stress or conflict among other members of the family.
Well siblings may
experience problems in school. An adolescent may act out when a parent is ill.
A couple may be in conflict when a child or parent is suffering. Family members
may develop physical symptoms that are similar to those of the ill family
member.
In any of these
circumstances, the family’s primary care provider can act as a resource for
referring the family to a family therapist who is experienced with illness and
collaboration with medical professionals.
What
kinds of interventions are commonly used?
Families seeking
help can expect a variety of useful interventions:
·
Family Therapy
It is
valuable for the whole family, including the ill member, to meet with a
qualified Marriage and Family Therapist. During sessions, the therapist can
help the family discuss how they are dealing with the illness, make decisions
together, and learn how to utilize their own internal strengths and resources
to address interpersonal problems. Family therapy sessions may also include
medical professionals who are involved with the ill member’s treatment. This
provides an opportunity for clarification of treatment and other issues, such
as reasonable expectations for the future functioning of the ill member.
·
Multi-Family Group Psychotherapy
Families can
benefit from meeting with other families who are also dealing with chronic
illness. These family group meetings are usually time limited (8-12 weeks) and
include an educational component as well as discussion and problem solving.
·
Individual Assessment and Treatment
Some family
members may be experiencing symptoms of depression or anxiety that need to be
addressed through individual assessment, appropriate medication, and individual
therapy in conjunction with family therapy.
·
Support and Psychotherapy Groups
Many organizations
offer support groups that focus on a specific illness. These groups are a
valuable addition to family and other forms of therapy. For persons needing
more support, group psychotherapy is often also available.
Consumer
Resources
Organizations
and Internet Sites
The text for
this brochure was written by
David Seaburn,
Ph.D.
© 2001 by the
AAMFT
