By Daniel Kuhn, LCSW, MSW
A good metaphor for the changing relationship
between you and the person with AD is the
relationship between two ballroom dancers. When a
couple dances, the roles of leader and follower are
carefully orchestrated. A good leader dances in a
way that enables the follower to be led almost
effortlessly. The leader’s cues may be so subtle
that the follower may not appear to be led at all.
The couple dances together gracefully as each
partner cooperates in playing his or her part. In
your relationship with a person with AD, you may be
called on to change roles from follower to leader.
Another thing about your relationship is that you
can no longer take for granted that the person with
AD will remember the proper steps. You must now take
a more active role in the dance. You must learn when
to step in and when to step back. Fluctuations in
symptoms will often make it hard for you to gauge
when to step in to offer help and when to step back
and refrain from helping. In a newspaper article,
Jean Baron describes this problem in relation to her
husband with AD: “Perhaps hardest is the
contradiction between his need for independence and
his need for help with some things. This leads him
to accuse me, on the one hand, of treating him like
a child and, on the other of not being sensitive to
his needs.”
It may take a long time—months or even years—for you
to learn a new set of “mental gymnastics,” even
though you may know that a different way of relating
is now required. The transition to your new
leadership role can evolve over time. In its early
stages, the disease does not require that you assume
a full-time position as a caregiver. On a practical
and emotional level, it is important to keep in mind
the limits of your leadership role at this stage.
One man shared his thoughts with me about his
limited but central role during the early stage of
his wife’s disease: “I purposely don’t think of
myself as a ‘caregiver,’ as the word implies a total
dependence on her part. This may be a matter of
semantics, but I try to differentiate between what
she needs for me to do for her and what she can do
for herself. So far, the latter far outweighs the
former. When that switch takes place, I guess I will
have become a caregiver.”
Fortunately, since AD progresses very slowly, in
most cases you can make the shift in your role as
leader bit by bit. The sooner the shift in roles
takes place, however, the better it will be for the
person with AD. If you are assertive without being
domineering, helpful without being overbearing, and
kind without being patronizing, then the person with
the disease is likely to respond positively to your
good intentions.
Daniel Kuhn is the director of
education at the Mather Institute on Aging, the
research and education division of Mather LifeWays,
a provider of senior living communities and services
based in Evanston, Illinois. He is currently
directing a three-year, federally funded project to
enable family caregivers to better manage their own
self-care. Through this project, 120 professionals
will learn to teach an innovative educational
program called Powerful Tools for Caregivers to over
2,300 family caregivers in northeastern Illinois. He
has authored or co-authored more than 30
publications on the impact of Alzheimer’s disease on
individuals and families, including his guidebook,
Alzheimer’s Early Stages: First steps for family,
friends & caregivers, now in its second edition.
Kuhn is a frequent presenter at regional and
national conferences.
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