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.
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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