Baby
Boomers as Alzheimer's Care Givers
By Deborah Uetz
The
majority of people caring for an Alzheimer affected parent are Baby
Boomers. When thrust into the roll of care giver there are things
that you can do to better cope with responsibilities.
The
following is an excerpt from the book Into the Mist, When Someone
You Love Has Alzheimer's Disease by Deborah Uetz.
Expectations:
Coping and Solutions:
Personal
Expectations and Acknowledging Successes
Learn
to acknowledge your successes, even if is only a silently celebrated
sense of accomplishment. It is imperative to remember that you are,
indeed, human and when faced with caring for a family member with
Alzheimer’s disease, it is a process through which you will have
both successes and failures. You will make mistakes. Your mistakes
will rarely, if ever, be of any significant proportion. You will
have successes. Just as important as it is to learn from our mistakes,
it is important to learn from the successes. Do not be afraid to
be human throughout the process.
Know
your limitations. Knowing your weaknesses and limits is a tremendous
strength. But knowing your limitations if you are unwilling to ask
for help is an exercise in futility. If you know your limitations
but constantly disavow their impact on caregiving or your won well-being
as a caregiver, you are likely to compromise both your own well-being
and that of the person with Alzheimer’s disease. Challenge yourself
to tackle things you think you cannot do, but learn to know when
you are pushing too far and you and your caregiving will suffer
as a result.
At
the same time, know your strengths. If you are prone to expecting
failure before you begin, you will experience failure. It is just
as important to acknowledge your strengths as it is your weaknesses,
and to capitalize on your strengths and compensate for your weaknesses.
One
of the toughest challenges you will face is assessing your situation
realistically and adjusting your expectations accordingly. The expectation
that you will be able to care for the person with Alzheimer’s disease
by yourself throughout the course of his or her illness may or may
not be realistic for you. It is unrealistic for most people. This
does not mean that nursing facilities are the only options. You
do have options, but you must be willing to avail yourself of them.
If you doggedly adhere to your elevated expectations despite evidence
that they are unrealistic and not working, you are damaging both
yourself and your loved one who has Alzheimer’s.
Try
to understand where your unrealistic expectations spring from. Perhaps
you know someone who was able to independently care for a person
with Alzheimer’s disease and you believe you should be able to do
the same. This is a mistake. No two individuals are the same, nor
are their situations. And you did not live in the house with that
person – there may well have been problems with caregiving that
you are not aware of and the person is not telling you about.
You
may expect that it is your duty as a spouse or responsible family
member to shoulder the responsibility on your own. Again, this is
a mistake. Part of being a responsible and loving family member
is to do what is best for everyone involved, and that includes both
you and the person with Alzheimer’s. Often, caring for this person
on your own will not be the best for either of you. Caregiver burnout
is common and it will affect your well-being, as well as that of
your loved one. It is much easier to avoid burnout when you have
assessed your situation realistically, thrown the phrases “I should
be…..” or “I should do…….” out the window, and set a realistic standard
for yourself and the people around you.
If
you find yourself caught up in a cycle wherein you feel as if you
have nothing but failures, you need to find ways to break out of
that cycle. Talk to friends and family members who may be able to
help you engage in a reality check, including helping you to see
your successes and adjust your expectations. People who have dealt
with Alzheimer’s in their own family may be particularly helpful.
Support groups may also be an invaluable resource at these times
– either online support groups or one available in your community.
People who have filled shoes similar to yours have often felt the
same emotions and can be adept at helping you to achieve a greater
balance in how you view your situation.
If
you have faced reality and really are in a situation where failures
are destined based on the circumstances, reevaluate the whole environment
and the circumstances that are continually causing problems. Take
a realistic look at things that you can change and what needs to
be done to affect changes. This may require making difficult decisions
and enlisting the help of others to help you make changes, but it
may be necessary. If you are, indeed, evaluating accumulating problems
realistically, the aggregation of difficulties may be an indication
that significant changes are in order.
Expectations
of the Person with Alzheimer’s Disease
Educate
yourself about Alzheimer’s disease. Read the chapters in this book
that provide information about Alzheimer’s behaviors, problems that
often arise during the course of the disease, and what happens to
the brain afflicted with Alzheimer’s disease. Read, also, about
solutions to frequently encountered problems.
Encourage
the individual with Alzheimer’s to independently undertake tasks
they are able to, help with those that require assistance, and learn
to recognize when you must step in and do things for the person
with Alzheimer’s. This may take time and some trial and error and
it will change over time. If, however, your expectations do not
change, you will find the individual increasingly unable to meet
those demands. Make flexibility your rule.
No
one wants to appear incompetent and, particularly early in the course
of the disease, people cover up their deficits. While it preserves
dignity, it also leads people to expect more of the person with
Alzheimer’s than he or she may be able to handle. Abilities also
fluctuate, sometimes from minute to minute. This may be due to a
number of factors, including brain damage that is only partial and
allows sporadic transmission of information. In addition, skills
in various areas of functioning will be impaired or preserved to
different degrees – an ability to tackle one task successfully does
not mean that a task that requires slightly different skills can
be accomplished. You will need to learn through some trial and error,
through careful observation, and via learning about Alzheimer’s
disease in general what your affected family member can safely accomplish
independently and when you will need to step in and help.
Overwhelmingly
the behavior problems that arise during the course of Alzheimer’s
disease are due to the effects of the disease and the brain damage
it causes. This is not to say, though, that a person’s characteristics
are erased when they have Alzheimer’s. For example, stubbornness
in an individual who is characteristically stubborn may persist.
Early in the course of the disease, some behavior problems may be
due to her preexisting stubbornness, to psychological factors, or
may be compounded by new disease variables. Even early in the course
of the disease, she will be far less able to guide and choose her
behaviors than she was prior to the onset of Alzheimer’s, so you
must always take the disease variable into account even very early
in the disease. You will need to learn how to tell the difference
between willfulness and behaviors that are more rooted in the disease.
Although it is next to impossible to be right all of the time when
forced to make these distinctions, it will help both you and the
person with Alzheimer’s if you are as sensitive as possible to the
differences between disease-based problems and the individual’s
own characteristics.
In
the early stages of the disease, the problems that arise may be
due to more of a mixture of the person’s preexisting personality
and the disease process. As the disease progresses, it is increasingly
the disease that is causing problems, and during the middle and
later stages, it is essentially entirely Alzheimer’s that causes
the behaviors and psychopathologies that are so problematic.
Keep
treating the person with Alzheimer’s in a respectful and loving
way. This may seem axiomatic, but it is all too easy to talk down
to a person with Alzheimer’s disease. Being treated with respect
and dignity is as important to someone with Alzheimer’s as it is
to anyone else, perhaps more as the disease begins to rob them of
abilities. Too often people with Alzheimer’s are treated in infantile
ways and it is demoralizing. Your expectations must constantly be
adjusted and at times the person’s behavior will be reduced to childlike
levels, particularly as the disease progresses. You will need to
find a balance between empowering the person with Alzheimer’s, treating
him or her with respect and dignity, and still guiding and caring
for that person in ways that are similar to how you might care for
a young child. Throughout, think about how you would like to be
treated were you in the same position: the golden rule is a good
rule of thumb.
Expectations
of Others
You
may believe that your friends and family will be involved in your
loved one's care and in many cases they will be. Here, too, you
will fare best if you throw your “should” thoughts out the window
– people often do not behave as we think they “should,” and expecting
people to participate in care in ways we think they “should” often
leads to disappointment and anger.
As
early as can be managed in your loved one's illness, it is important
to put plans in place that detail what role others will play in
your loved one's care. If possible, hold a family meeting to outline
how each family member will contribute, the limitations to the contributions
individual family members can or will make, and how to capitalize
on individual strengths most effectively. Be flexible as needs may
change over time. It is imperative that you tell people specific
things they can do to help you when help is offered. The offer may
not be repeated as time goes on. If you are the spouse of an Alzheimer’s
patient, you will find the jobs that were filled by your spouse
now fall on your shoulders. Regardless of how busy you become your
grass will grow, gutters will clog, dust will fall, and finances
will need to be handled. Seemingly unimportant little things can
become major stressors if you have no one to help you.
If
you are the adult child of a person with Alzheimer’s, your roles
will also shift. You may be asked to undertake personal and practical
care tasks that are uncomfortable, and you will often find yourself
in a parental role as the person’s ability to do things independently
diminishes. This all occurs in the context of adult children leading
their own complicated and busy lives, sometimes leaving these offspring
feeling overwhelmed.
Plan
ahead for the time you will need to take care of the jobs that have
been shifted from your spouse’s or parent’s shoulders to yours,
and for the tasks that you generally undertake yourself but which
are now coupled with caregiving. Take time early in the course of
the disease to investigate services available to the person with
Alzheimer’s and the family. Talking to other families that have
experienced Alzheimer’s in the family, or finding information through
libraries and the Internet, may help you to anticipate problems
you had not considered. The more you know about available services
and financial assistance, the less you will be thrown for a loop
by the unanticipated.
The
hardest task may be to redefine how you view family members. Families
tend to work as systems, and the roles that many families use to
conceptualize each person’s place in the family help to organize
the system in peoples’ minds. Note that these roles are often tacit;
many of you may be saying to yourself, “Our family doesn’t do that.
We view each person as an individual.” That may or may not be true
of your family. Take the time to look as objectively as possible
at your family to analyze if people have been pigeonholed in certain
roles.
The
family will operate most effectively if each person is allowed to
contribute based on his or her strengths, and is allowed to contribute
in ways that you may not expect. Try to see your family members
as you may never have seen them before – see the possibilities and
the strengths in the person, regardless of how you may have thought
about that individual in the past. Not all family members will be
able to contribute significant help during this process, but do
not make the mistake of counting people out prematurely.
Being
flexible throughout the process will help you deal more effectively
with the variety of issues that will arise. Changes that occur throughout
the course of the disease will require continual decision-making
and changes in family structure. Offspring will have to make decisions
for a parent, thus altering the traditional parent-offspring roles.
Some siblings may be called on or may assume more active roles in
caregiving and decision-making than others.
If
your family is excessively rigid when it comes to shifting roles
and responsibilities, it may help to seek brief professional assistance
at various points along the way. Even one family meeting with a
mental health professional or a combination of involved professionals
may help to sort through and solve temporary practical and emotional
roadblocks.
Deborah
Uetz
Author of Into the Mist, B.S. Education, E-zine Expert, online support
monitor
