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.
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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