Having spent my career as a Medical Social Worker and Elder Abuse
Investigator it seems natural for me to share some insight for those family
members and caregivers working with victims of Alzheimer's disease.
I will not take a Physiological and Psychological approach for delivering
information. I will leave that to Physicians and Therapists. What I would like
to share is some practical information that has proven helpful to my clients and
their families and caregivers.
First of all, I will say that being with a loved one or patient with
Alzheimer's type dementia is difficult if not heartbreaking. Seeing a person
often familiar or most dear in an abyss of memory loss takes determination and
strength. The greatest barrier to appropriate care is accepting the relationship
must change and must become flexible. It is the burden of the caregiver to
initiate these changes in order to provide safe and loving care.
The nature of this illness fluctuates and the direct caregiver would benefit
from being able to do the same, emotionally and practically. Visualize the mind
of the patient or loved one as a window. The window is often foggy, half-open,
closed and sometimes completely clear. There is no timetable or report that will
tell you what is going on behind that window.
The foggy window represents the periodic fluctuations during the early to
mid-stage phase of the dementia. The half-open state is the more obvious and
frequent periods between clarity and confusion. It is during this period that
most agitation, suspicion, aggression and fear are displayed. This is the most
difficult time for the caregiver and the most emotionally painful for the person
with the dementia.
The closed or end-stage is the most painful emotionally for the caregiver.
The aggressive behaviors will have diminished but the person behind the window
is no longer home and rarely recognizes anything or anyone around him or her.
Activity in the affected brain is erratic and therefore there are often
periods of clarity, comprehension with appropriate behaviors and responses
during the early stages of the disease process. Knowing how to respond to these
changes can reduce the burden of care, increase the safety or the cared for and
bring some peace of mind and acceptance for the caregiver.
Interested readers can request further articles for help with building a
caregiver toolbox, with basic strategies for coping with and managing the phases
described above.
© 2006 Sherry Mahi