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NFCA Philosophy
What does it mean to be a happy person when you are a family caregiver?
How can you gain a feeling of confidence in your abilities and have a sense of pride in your achievements?
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How do you stand up for yourself, take care of yourself and find a balance between your own needs and those of your loved ones?
These are heady questions, and ones that have been discussed often at the National Family Caregivers Association.
We have looked for answers in our own experiences, in books, from professionals, and from other family caregivers.
We've thought long and hard about these issues because they are at the core of our search for meaning and our need
to have principles to live by as family caregivers.
We call our approach to caregiving, Four Messages to Live By. They are the fundamental tenets of our philosophy.
They have helped thousands of caregivers to date and we hope you will use them as guideposts in your own personal
search for a sense of direction and inner peace. The four messages are:
1. Believe in Yourself
2. Protect Your Health
3. Reach Out for Help
4. Speak Up for Your Rights
Believe in Yourself - and Take Charge of Your Life
Often we become caregivers very suddenly, without warning - a husband is diagnosed with cancer, a child
is in a car accident, a parent has a stroke. At other times, caregiving creeps up on us - we know mom is
forgetting things and we slowly start taking on some administrative tasks and calling more often, until
one day we realize she no longer has the capacity to live safely on her own.
Regardless of how we become a caregiver it is often a shock and always an emotionally draining
experience. In the "hubbub" that follows, amidst the reorientation of our schedules, the search for
resources, the fears about the future, and the challenges of the day-to-day, we never stop to think
about what has happened and devise a plan that takes into account the health and well being of all
concerned - including ourselves. We just go on automatic pilot and do, and do, and do.
Somewhere along the line however, it is vitally important that we do stop, take a breath, and try to
gain some control over the situation, rather than letting the situation control us. It is vitally
important that we choose to take charge of our lives, and believe in ourselves.
What does that mean - choose to take charge of our lives? Obviously we cannot control everything that
happens to us, or to our loved ones. But we can make active choices about how we are going to deal with
the circumstances of our lives, choices that reflect confidence in ourselves and our ability to cope.
We can look at life as a glass half full, or we can try to make lemonade out of our lemons. We can
choose to martyr ourselves in the interests of the loved one for whom we are caring, or we can set
limits on what we as individuals can and cannot do without causing irrevocable damage to our own
health or the other relationships in our lives. Caregiving is complicated. It is forever changing,
and it usually involves a variety of people, not just the caregiver and the care receiver. Recognizing
this is critical if we are going to give ourselves permission to actively make choices and not always
be on the receiving side of consequences.
The choices that we can make, or have to make, during the course of our caregiving experience will
change as circumstances change. It is hard to realistically make a decision about whether to try a
risky experimental therapy when a loved one is asymptomatic. It is impossible to really know what it
would be like to have your mother living with you and your family when she is frail and needs lots of
help if she is only 61 years old now and the picture of health.
Believing in yourself means recognizing your strengths and your limitations and knowing that it is
okay to set boundaries, and to say: "yes I can and will do this, but I'm sorry, I just can't do that".
Being a caregiver, a willing and loving caregiver, doesn't mean you discard the word "no" from your
vocabulary. We need to know our own limits and the consequences of our actions. The lifting we could
easily do five years ago may be having dire consequences for our back today. When we started spending
more time helping grandma it didn't seem to impact the kids, but now they are feeling the loss of our
attention and getting into trouble at school to prove it. Caregiving is a relationship - between many
people. Believing in yourself recognizes that you are one of those people. Making choices in your own
interests isn't selfish - it is often the most important thing you can do for all concerned.
Protect Your Health
It is easy to lose your true self while being a family caregiver. It is easy to lose your identity as an
individual and that is why it is so important to cling to the core of your personality. Do the things
that make you happy, that let you say: "I feel like 'me' when I am doing this or that, or I like 'me'
when I am being this way."
Caregiving so often keeps us off balance. It is easy to get lost in its physical and psychological
maelstrom-the sadness, the frustration, the stress and strain on your body and your mind, the financial
worries, the emotional pain-you know them well. All the more reason to step out of the frame on a
regular basis, and rekindle your special light by cultivating the other parts of yourself, to learn to
give to yourself in addition to giving to others.
Rabbi Hillel, one of the great sages of Judaism, said many years ago, "If I am not for myself, who will
be for me? If I am only for myself, what am I? And if not now, when? He was a wise man, and he
recognized the need for all of us to have balance in our lives and serve ourselves as well as others.
His message is a wake-up call to all family caregivers that loving yourself is not selfish. It is in
fact a way of honoring and valuing the wonder of a human life.
The inner person in each of us is different, and we all need to find our own way of keeping in touch
with ourselves and developing an awareness of what fulfills us so that we can turn to those things for
energy, solace, and validation. It might be the time you spend in church that allows you to separate
yourself from caregiving for a time and that brings you peace. It might be the career that not only
"brings home the bacon", but also provides you with personal satisfaction. It might be as simple as a
15 minute bubble bath you allow yourself every Friday evening as a way to calm yourself down and welcome
the weekend.
It is not an easy thing to do especially when you're racing around and perhaps living from crisis to
crisis. It is not easy because doing so often makes caregivers feel guilty because giving to one's
self often means taking time away from fulfilling either real or perceived obligations.
But how do you do it? How do you create some balance between caring for others and caring for yourself?
There's that pesky question again. You do it, by recognizing that your own good health is the very best
present you can give your loved one. Your own continuing ability to stay healthy is vital to your
continuing ability to be a competent family caregiver.
Believe in your value as a human being and your right to a few minutes of personal space, at least
several times a week. If you can take more than that, it is a bonus from which you will prosper, but
all of us, even the busiest of caregivers can find 10 or 15 minutes several times a week to care for
themselves. The trick is to start and to focus those few minutes on you, your interests, and your
dreams - and remember that the best present you can give your loved one is your own good health.
Reach Out for Help
In caregiving circles we hear a lot about the word support. Family caregivers regularly seek
supportive relationships with other caregivers, knowing they can provide the emotional sustenance
needed during difficult times. What support doesn't do is change the circumstances under which you are
living. It doesn't relieve you of some of your responsibilities. That's the work of a different
word-and that word is HELP.
Providing help is something that family caregivers know a great deal about. It is what we do every
day. The question is how often does someone lend you a helping hand? If you are like most family
caregivers, the answer is not often enough.
But how do you get the help you need, and where do you find it? Just as you have to reach out to get
support and be open to receiving it, you need to reach out and ask for help, and know how to accept
it when it is offered.
At NFCA we have learned that the first step in getting help is the recognition that caregiving is far
too big a task to undertake alone. This is true for all caregivers, but particularly for those who are
assisting loved ones with multiple needs or providing round-the-clock care.
Some people have a hard time admitting they need help. They feel guilty because they can't juggle
everything themselves, or they believe no one else can do their job as well. They forget that the
totality of caregiving - like all jobs, is made up of lots of individual tasks, not all of which are
of the same importance, or require the same skills.
Many people think asking for help is a sign of weakness. That isn't so! Asking for help is a sign of
strength because it is an acknowledgement of the difficulty of the situation at hand. It is a sign of
strength because it requires putting pride aside and acting in the best interest of your loved one and
yourself, and that isn't an easy thing to do.
Speak Up for your Rights
The first step in standing up and being counted as an advocate for your loved one is to recognize that
you are a family caregiver, in addition to being a wife, a mother or dad, a daughter or son, a sister,
brother, friend, niece, etc. It is important to acknowledge your role as a family caregiver because
that bonds you with the millions of other family caregivers in America who share many of the same
worries and concerns that you have. Acknowledging that you are part of a group, a very large group,
helps provide the strength and the conviction that you often need to speak up for your loved one and
yourself.
We all have a right to be acknowledged; to be respected for the work we do, and the role we play in
society. We all have a right to receive answers to our questions. Speaking up to physicians, talking
frankly to members of our family and our loved one's family about the reality of your circumstances,
these are all acts of advocacy. This is something we should all do.
Some family caregivers may also be interested in speaking up publicly, being an activist on behalf of
themselves and all family caregivers. Not everyone is comfortable doing that, but we can also vote
and we can all send an email to our elected officials.
Self advocacy and public activism, they are two sides of the same coin - speaking up for yourself and
your loved one.
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