By Daniel Kuhn, LCSW, MSW
Since the person with AD no longer
possesses the mental skills to be completely independent, a special
brand of leadership is called for. At least one person must assume
overall authority for ensuring the well-being of the person with AD but
it is best to include others too if at all possible. Much work is
involved in addressing basic physical needs like food and shelter as
well as the psychological and social needs discussed in the previous
chapter. You need not be afraid of taking on this important leadership
role or a major part of it, although it may feel awkward at first. The
person with AD needs your help. If possible, it is best to share this
role with someone else or at least to delegate some of the
responsibilities to others who are willing to help and support your
efforts.
Whether the person with AD is your spouse, parent, sibling, or in-law, a
shift in the balance of power must occur in your relationship. You may
feel uncomfortable at first with the term power. Yet the dynamics of
power, influence, and authority exist in every relationship and can be
used constructively. The change in power balance derives from the fact
that the person with AD needs protection from the risks posed by the
disease and can no longer meet her or his needs alone. Because of
impairment in memory, thinking, or other brain functions, the person
with AD no longer has intellectual equality with others—an unfortunate
reality. As one person’s role in the relationship changes and personal
control diminishes, the other person’s role must change in corresponding
ways.
Any person giving direction and assuming greater responsibility in a
relationship is exercising more power than the other person. This does
not mean, however, that the dignity of the person with AD should be
diminished or ignored. On the contrary, preserving his or her dignity
becomes the utmost priority. In taking leadership, your job is not to
dominate the life of the person with AD, but to help minimize the
affected person’s disabilities and maximize his or her remaining
abilities. This implies not only caring for the person with AD but also
caring about the person. Ultimately, the leadership role is about
meeting the needs of the other person.
It takes self-confidence to assume leadership on behalf of another
adult. It also takes extraordinary empathy, patience, and understanding
to exercise this powerful role in a loving way. Despite the inequality
of the relationship, the self-esteem of the person with AD must be
upheld. Otherwise, feelings of embarrassment, depression, and
frustration may arise, and conflicts may develop. In Counting on
Kindness: The Dilemmas of Dependency, Wendy Lustbader describes the
finesse required of the leader: “The best assistance is that which is
unobtrusive. Helpers who quietly get things done, rather than announcing
their efforts, leave a dependent person’s pride intact. The indebtedness
position is not emphasized, and no mention is made of special
accommodations. The fact of helplessness then recedes into the
background, where it can reside without harming the person’s
self-esteem.” Sensitivity to the feelings of the person being helped can
lead to mutual understanding and cooperation.
Knowing how and when to help out completely, partially, or not at all
also requires you to think on your feet. Sometimes it may seem more
efficient for you to take over a task completely. At the same time, by
doing so you may be ignoring the remaining abilities of someone with AD.
You may reason, “I can fix a meal in half the time it takes him so I
might as well do it by myself,” even though the person with AD may
derive satisfaction from playing a part in meal preparation. At the
other extreme, you may assume that a certain task can be done
independently, causing the person with AD to struggle needlessly. You
may think, “She can still manage paying those bills by herself” when, in
fact, she may silently wish for relief from this stressful work.
Understanding the different levels of dependence and independence
requires much insight into the needs and preferences of the affected
person. At the same time, you cannot overlook the limits on your own
time, energy, and patience. Balancing all these practical and personal
needs can be a real juggling act.
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