This article first appeared in "The CareGiver: The newsletter of the Duke Family
Support Program" for families involved with Alzheimer care. The title of the
article is Family Caregiving: "Good Enough for Now.", by Cornelia M. Poer and
Edna L. Ballard. I hope you find this helpful.

Robert



No caregiver arrives at the same conclusion in the same order or for the same
reasons that I have, just as no individual assembles a jigsaw puzzle in the same
sequence,
even if all the pieces are the same.
---Elizabeth Czeck Beckerman Chapel Hill, North Carolina
Care giving has many rewards. It is also an awesome responsibility that can be
physically and emotionally exhausting. There are occasions for anger, fear,
sadness, and the desire to be free of care giving responsibilities. Many things
about care giving cannot be changed—the course of an incurable disease, the
irascibility of a dependent parent or the lack of sufficient funds when one has
to give up his or her employment for care giving. Adapting the attitude, "good
enough for now", allows you to be more flexible and reasonable in your
expectations of yourself. You can do the best you can at the moment with the
time, energy, and resources available to you without recrimination, regret, or
second guessing. Changing those things you can change and accepting those you
cannot offer the most balanced approach to care giving.

Give Yourself Permission to be Imperfect

• You do not have to be strong and correct at all times. Nobody was born an
expert. "Great caregivers are made, not born." Great doctors, social workers,
nurses, and caregivers became great with practice.

• Don’t demand more of yourself. You become good or proficient one lesson at a
time, sometimes after repeating a lesson over and over until you get it right.
Mary W. writes in Lessons Learned, (Ballard, E.L. & Poer, C.M. (2000) Lessons
Learned: Shared Experiences in Coping -from the Duke Family Support Program). "I
cried for a year or more—gained 20 pounds from worrying and eating... .Cried
some more and it went on and on... Then I began to see... little things weren’t
BIG anymore. And life went on."

Know that Care giving is Difficult

• Generally in life, the more experience you have with doing something, the
better you get at doing it and the "easier" it becomes. If you knew that every
day would be just like today, you could learn to manage the task of care giving,
no matter what the challenge. Unfortunately, taking care of someone with
dementia becomes more challenging as time goes by—from day to day and even from
hour to hour within the day.

• It is OK to expect help. Often, we are our own worst critics and expect more
of ourselves than is reasonable or possible.

• It is OK to ask for help. Needing help is not a character flaw.

Do Your Best

• Do your best under the circumstances. These are circumstances you did not
create and which are beyond your control. "You cannot control the wind but you
can adjust your sails. "This is wisdom of the ages. Our grandfather would
say—"roll with the punches," our children would say—"go with the flow," and your
minister or therapist might say—"it’s finding balance in your life."

• Doing your best does not mean committing yourself to the point of physical,
emotional, and financial exhaustion, even when you feel no one can do the job as
well as you can. Doing your best requires seeing that the person gets the help
he or she needs. It does not mean that you alone should do it. It means
accepting "good enough for now" solutions.

Accept the Reality of What is in Your Life

• In social work, we "meet the person where he/she is." Learning to "meet" our
loved ones and ourselves where we are can be key to compassionate care giving.

• Appreciate and encourage remaining abilities. While short-term memory and
details may be lost, long term memory of the essence of things is often quite
intact. Reminiscing about the past can be very rewarding and enriching to the
person with memory loss as welt as family members. Talking about past successes
and joys may promote feelings of self worth. Other hidden or underused skills
and interests may remain such as artistic talents, humor, or athletic abilities.
Exploring and appreciating remaining abilities may go along way in accepting the
reality of what Is.

• Enjoy the person as she or he is today. We are always changing. If you are
married, your spouse is different today than on your wedding day. And so are
you. Careers, children, and life experiences are constantly changing who we are.
We may embrace some changes and reject others, but we have learned to
accommodate to changes in others and ourselves. Dementia, by definition, is a
change in memory and thinking significant enough to impair activities of daily
living. It is a given that dementia will change our loved ones and ourselves. By
using our fine-tuned skills for adjusting to change, we can look for the best,
the embraceable changes and enjoy our loved ones for the people they are today.

Conserve Time and Energy

• A caregiver writes that care giving is "a rocky road of fatigue, frustration,
loneliness, increased responsibilities, decreased affections and
companionship...".

• Conserve time and energy by learning techniques for managing special needs or
concerns of the ill person.

• Hire yard help, use pharmacies that deliver, plan your errands so that you can
do everything on the same side of town, keep a list of helpful hints which
appeal to you, i.e., keeping the dry cleaners’ slip in your automobile glove
compartment so it’s always available.

• Use the help of experts (professionals, books, tapes, classes, support groups,
etc.). Take a class on how to make a bed with the person in it from the local
Red Cross or health department or use, for example, the Non-Chew Cookbook, in
preparing meals for someone who has difficulty chewing or swallowing. Make
multiple meals and freeze several for later use.

Economize Emotions

• Don’t sweat the small stuff—If you "sweat the small stuff’ you are not alone.
Richard Carlson wrote a popular series of books called "Don’t Sweat the Small
Stuff." We are most likely to sweat the small stuff when we feel our lives are
out of control. Initially, we may search for the little things we can control
because our lives and the situation may feel so completely out of control.
Before we know it, we have gotten mired in the minutia of small stuff.

• "Small stuff’ is different things to different people. If you are sweating the
small stuff, ask yourself "why?". "Do I feel out of control?" "Am I stuck?" Then
begin to make appropriate changes.

Take Care of Yourself

• Exercise, eat well, sleep and make time for your own needs. Do those things
that will renew and restore you. If family caregivers ignore these normal human
needs, they are at risk mentally, physically and spiritually. When resources are
drained, there are fewer opportunities for respite or support. Simple exercise,
for example, has many benefits including: you can do it anytime, as much or as
little as you have time for, and it can be tailored to your particular need or
style. It can be informal or designed by your physician or physical therapist to
meet specific needs. It is the rare person who cannot benefit from some form of
exercise.

• Make time for yourself. A spouse writes: "My body was tired. I did not sleep
well. I could not think clearly when I had to. And my anger increased. I was a
rubber band stretched to my limit and I felt emotionally bankrupt." Self-care is
especially important when care efforts deplete the caregiver, or when the
dependent person cannot say ‘thank you", gives little in return, or actively
resists needed assistance.

Learn from Others

• More than fifteen years ago, an experienced family caregiver, Leonell Robeson
from Statesville, instructing other caregivers had this advice: "Get a sitter
and get out—lunch with a friend, a movie, shopping or, as one day last week, I
went to the church library and spent three hours in peace and quiet to catch up
on some paperwork... Go clothes shopping—I have spent more on clothes than ever
before in my life but not to extravagance. I tell myself "I deserve it!" One of
the greatest tension relievers for me is water exercise and swimming (though Jam
not a good swimmer) ... One day he started hallucinating so I couldn‘t leave him
again. But this is so important to my well-being that I have finally located a
service that provides a trained attendant to come in three mornings a week.
While I can ‘t afford it often enough, occasionally I make good provisions for
him and I get away for a few days. I know I am a good care provider and that he
possibly feels more secure with me—but I know to maintain my sanity I have to
completely remove myself from the situation. I don ‘t worry about him while lam
away, and I don‘t feel guilty about leaving him. Some days care giving is
challenging; some days a ‘drag, ‘but when I begin feeling sorry for myself I
start planning a diversion. It keeps me functioning and it makes me proud of
myself I can accept the fact that lam not superwoman. All these years later this
advice is still good, still as fresh as when it was first offered by this
wonderfully balanced caregiver.

Accept Help from Others

• Here is the hardest part for some people. We are a society that values
independence. Is asking for help really a sign of weakness? Many of us have
never asked for help. We don’t know how. Others asked and didn’t get the help
they needed so they stopped asking. Some of us have "our noses on the tree" and
don’t even realize we need help.

• We have to give ourselves permission to ask for help and accept it. Without
this step, feelings of inadequacy and guilt can come up and keep us from getting
help in the future. Many people are very willing to help if we only allow them
to do so. Often friends and family are afraid to "step on toes" and will tell
you to call them if you need help. Calling to ask for help can feel like an
additional burden and may leave the caregiver wondering if "I should just do it
myself."

• First you must identify the help you need. As you go about day to day tasks,
make a list of areas where you could use help. When you decide to ask for help
or someone offers to help, have a clear idea of what you want. The "helper" also
has a clear idea of what you need, and whether lie/she can or cannot do it.
Don’t give away tasks that you enjoy.

Forgive Yourself When Plans and Efforts Go Awry

• There is no game plan. Most success comes through trial and error. What works
perfectly today may not work tomorrow. It’s like playing a game where the rules
are always changing. We learn as we go. Even when you are experienced, even when
you know a lot about the disease and how it affects the person, no caregiver can
muster what it takes to remain patient and calm all the time. Sometimes you will
lose your patience, yell or cry, or say things you later regret. What is
important is the next step—how you pick yourself up and go from there.

a.. The Reverend Tanya Vonnegut Beck writes in Daughters of the Elderly.
Building Partnerships in Care giving, (1988). "Of all the inner transactions,
forgiveness may be the most difficult. It means letting go. Taking new risks,
and sometimes forcing painful confrontations with yourself and with others." We
must be willing to take the risks.
• Learn from your mistakes: There are no perfect solutions. No supermen. No
saints.

• Not being able to move on, especially from painful situations or memories,
results in missed opportunities. Moving on means having confidence that the
tools you have for the task are the best available to you. Moving on means being
aware that the road ahead will not necessarily be straight. There may be bumps
and bends in the road, unexpected barriers, the need to make new decisions, the
need to get more instructions, guidance or support along the way. Moving on,
most importantly, means that you did the best you could under the circumstances
with what you had. It means applauding and appreciating yourself, even when you
didn’t do everything perfectly.

Remember You Can Say, "No"

• You may have to practice saying "no" and standing up for yourself and your
family member. Even if you do say "no", others may not be listening. Stand your
ground. Don’t give in, if at all possible. You can say "no" in a kind way
without alienating others.

• Care giving is not for everyone. Most people are not born with the skills
necessary to provide care 24 hours per day for prolonged periods of time.
•Sometimes unresolved issues or "ghosts" from our past make family care
impossible. Assuming the role of care manager may make more sense. Becoming the
"chairperson of the board" can ensure your loved ones’ needs are still met.

• Even if you have the desire and ability to provide the care your loved one
needs, often other demands keep you from assuming responsibility for care.
Spouses, children, distance and careers are just a few of the other
responsibilities you may have.

When to Choose the Role of Care Manager

• There may be a number of reasons why you cannot take on the role of
"caregiver": distance, family or work obligations, your health status, and
relationship history with the care recipient, temperament. The role of "care
manager" is a more viable option when you do not wish to be intimately involved
in personal care.

• See yourself as the Chairperson of the Care giving Committee. Bring to the
table past skills to structure care routines. Delegate tasks and
responsibilities much the way you would in a corporation with the same
expectations that the whole will benefit from the contribution of many (skills,
time, commitment, different ideas and perspectives).

Know Which Battle to Fight

• This may save your sanity. As long as the safety of your loved one and others
is not in jeopardy, let things go. Say or think "let it go" or "Throw it into
neutral." These phrases will do wonders in defusing situations. Trying to make
someone who cannot remember and may lack judgment understanding becomes an
exercise in futility. If your loved one is in a care facility, choose your
battles even more carefully. If you confront staff on every issue, they soon
tune you out and nothing you say has any value. The same can be said about other
family members. They may not provide care the same way you would, but picking
every situation apart will have the opposite effect. You will have more than
ample opportunity to do it your way because you will be left holding the bag.

Set Priorities: These Simple Questions May Help Set Priorities

• What are the most urgent needs of the care receiver? Caregiver? Other family
members?

• What are the consequences if I ignore a particular "issue" or "problem"?

• Am I the only one who can do this? Are there others available who are willing
to help?

• What can I delegate to other people?

• Is this something that must be done now?

• Who will be affected by the decisions that I make?

• Why am I doing this —habit, tradition, someone else’s expectation, guilt,
comfort, fear of reprisal or objection from the care receiver?

• Have I paid attention to the emotional needs of all involved?

Get Help

• You cannot do this alone.

• Sometimes the biggest barrier to getting help is finding it. You must know
what help you need and are willing to accept before you begin looking. You may
have to start big, such as the Area Agency on Aging or Council on Aging, to
determine what type of services are out there. You may have to start small and
make a list of the tasks and then look for assistance. Just saying you need help
is not clear enough. Be specific. "Someone to sit with Dad every Thursday
afternoon from 3-5 during my pottery class." "Someone to cut the lawn once a
week." Most communities have access to home health care. Some have Senior
Centers or congregate meal sites. Adult day programs or assisted living may be
what you need. Support groups are great places to ask about local help. Thinking
"outside the box" may also open up opportunities. If finances are limited, it
still may be worth your while to purchase what services you can. You may be able
to manage the day-to-day responsibilities of care giving, but feel overwhelmed
with the additional demands that come along. Necessities such as taxes, bill
paying, yard work, and grocery shopping may become insurmountable problems if
you must insure 24-hour supervision. Hire out or "out-source" the services you
do not or cannot provide. Again, spending money now may save money in the long
run.



Take One Day At a Time, But Prepare for the Future

• Learn to focus on the moment. Focusing on the moment allows you 1) to be
completely "present" with the person and his or her disability, 2) to fully
appreciate the person and what they can bring to the relationship despite his or
her disability, and finally 3) it allows you to see more clearly and do the task
at hand well. Your family member’s condition will change. Focusing on today does
not mean you are neglecting or ignoring the future.

• Changes may necessitate moves. Do you need a living will, durable
power-of-attorney, family conference? Putting your plans, needs, and desires in
writing is critical. Writing down and distributing copies of what you would like
to have happen or what you have already arranged is crucial.

Establish a Contingency Plan

• A contingency plan can make the difference between a crisis and a stressful
situation. Evaluating helpers and making decisions under less pressure is better
for all involved. This also provides adequate time to investigate additional
resources or track down needed information.

• Even the best plans or situations can get off track without notice. Know what
you want in advance and how to go about getting it. Gather information or make
arrangements now to save time and money later.

• All the work in the world will be useless if you are not available to explain
or implement it at the time it is needed. Put your plans, needs, and preferences
in writing. Write down what you would like to have happen or what you have
already arranged. Remember when it comes to care giving, "Good Enough for Now"
may be just right.



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