Caregivers experience four clearly defined stages as they
travel the caregiving path. These stages can be understood as
"developmental tasks" in adapting to the role of
caregiver. These stages may occur at the same time, or in any
order, and may "recycle" themselves during the course
of a caregiving relationship.
Surviving
Surviving is what you do to keep going when you are feeling
completely helpless. Surviving consists of coping: doing what has
to be done and expending one's energy to just get by.
Searching
This is a time of acting, of moving forward from a reactive
state of surviving. It is the beginning of a sense of control
over emotions and your life; the awakening of a source of energy;
a time for asking questions about the goals, values, and
priorities of your own life. Outer Searching asks,
"What's wrong? Can it be fixed?" Inner Searching
asks, "Why? Why him or her? Why me? Why us? What does this
mean for me and for our lives?" Searching also involves
seeking answers and interventions related to the illness or
condition.
Settling In
This stage is seeing the world for what it is and seeing
yourself for who you are. It is moving beyond the intense
emotions of surviving, feeling less of the sense of urgency of
searching, and gaining a greater sense of control and balance in
your daily life. Settling In is a time of relative equilibrium:
you may not ever "forget" the reality your precarious
time, but it can become a time of deepening, and more precious,
moments in the relationship.
Separating
This final stage is a normal and necessary process in
parent-child relationships. In a caregiving relationship,
"letting go" by the caregiver may be especially
difficult, with the caregiver unwilling, or unable, to experience
any small separations, such as letting others help out in the
caregiving and getting needed respite. However, it is necessary
to avoid caregiver fatigue, and to allow the needy family member
to retain or attain some level of independence.
The four stages are part of a normal process of adaptation. By
understanding how they work, caregivers can better predict their
emotions and reactions, and not think they are somehow
"failing" when they feel a sudden rush of uncomfortable
feelings. The stages help us see how we grow through the crises
and hard times of our lives. The struggles and challenges of
caregiving present great sorrows at times, but also opportunities
for personal growth and competence.
Nancy B. Miller,
Ph.D., MSW, author of Nobody's Perfect: Living and Growing
with Children Who Have Special Needs. Paul Brookes Publishers,
1994.
There are a number of scales outlining stages of of the
various different neurological diseases. But the care of a
patient generally involves not only the patient, but also a
primary caregiver — usually a family member. Based on
observations in his years of caring for people with
Alzheimer's Disease, Eric Pfeiffer, MD, presented these
Stages of caregiving in the American Journal of Alzheimer’
s Disease March/April 1999.
Stage 1: Coping with initial impact of being told the
diagnosis
Families recognize loss of patient's memory and seek out
medical assistance. A diagnosis is made - this becomes a
life-changing event for families. Families fear the unknown and
future episodes of violence and disruptive behaviors. Plans for
the future have to be set aside. Families need information about
the disease, community resources, treatments, interventions,
nature of caregiving; emotional support from health
professionals, and peer support.
Stage 2: To be or not to be... a caregiver?
Families decide to be caregivers or seek out other options
for caregiving. Choosing to be a caregiver is a very personal
decision. There are many rewards for those choosing to be a
caregiver: emotional support and interaction with the patient,
relatively low cost in caregiving at home, and greater quality of
life for patient who remains in the home setting. For those who
cannot commit to the caregiving role, there are many options
available: recruiting other family members, using specialized
assisted living facilities, and employing care managers to
oversee the needs of the patient.
Stage 3: Caregiving at home: the long journey
This is the longest stage of caregiving for those who have
chosen to take on the caregiver role and is generally divided
into three substages:
Mild Impairment:
Caregiver tries to make the life of the patient as normal as
possible. Patient is encouraged to maintain skills; can no longer
learn new skills. Caregiver can still leave patient alone at home
for several hours at a time.
Middle Stage:
As the patient losses more skills, the demands of caregiving
increases. Patient may become difficult to understand and can no
longer be left alone. Caregivers need to use short-term respite
care on a regular basis at this point. Caregivers are reluctant
to share caregiving responsibilities and can become absorbed
entirely by the caregiving experience.
Advanced Stage:
The patient becomes increasingly dependent on the caregiver,
as all skills for life are lost. Caregiving extends to a 24
hours/day, 7 days/week commitment. Caregivers need to be made
aware of outside resources for assistance so that they may attend
to their own health needs and family responsibilities.
Stage 4: Considering institutional placement
When caregiving becomes too taxing for the caregiver,
institutional care may be considered. Caregivers need information
about different levels of care. They also need empathy regarding
the loss of their role in caregiving and assurance in giving up
the role of caregiver to a group of health professionals. The
patient may no longer be aware of his/her presence in a family
home.
Stage 5: Caregiving during residential or placement
Caregiving responsibilities continue and now include visits
with the patient, and oversight of the care being provided by the
facility. Caregivers may experience actual and anticipatory grief
over the loss of the relationship with the patient and the loss
of the patient’s abilities. Some caregivers find relief
institutional in having placed the patient, and others experience
depression in having lost placement control of the
patient’s care.
Stage 6: Death of the patient-grief and relief
Death of the patient triggers profound grief and guilt over
the sense of relief that caregivers may experience. Professional
assistance may be needed to put patient-grief and the experience
into perspective and recognize that it is time to heal and relief
resume life.
Stage 7: Resuming life-healing and renewal
Neurological diseases are devastating and leave many scars.
Caregivers will need time to re-group and pull their lives back
together. Many caregivers go on to be very involved in the care
of others affected by these diseases by volunteering and
mentoring. Others turn away to go on with their lives. Caregivers
usually find they are stronger, more grounded in their values,
and have a renewed zest for living.
