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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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