By National Family Caregivers Association

Messages to Live By

We all have lessons to learn throughout our lifetimes. Life evolves and sometimes our journey takes us through turbulent waters and other times the waters remain still. These journeys become a part of us and make us who we are. We are here to learn from one another and through these lessons, we can heal our relationships and sometimes ourselves.

Becoming a family caregiver for someone you love is one of those heart wrenching and at times enlightening life lessons. Your role as a family caregiver can happen abruptly or creep in slowly-unnoticed until one day you realize you are caring more for someone else than you are for yourself.

You find yourself beginning to struggle with the day-to-day demands and somewhere along the way, you realize you have lost your identity and have allowed the caregiving role to define who you are. Your new role as a family caregiver can become as frightening as the initial diagnosis.The journey can be a difficult when traveled alone; however, it does not have to be that hard and you do not and should not have to travel the road alone.

Believe in Yourself: NFCA stresses the importance of trying to maintain a positive attitude by recognizing your strengths and limitations. By believing in yourself and recognizing your strengths and limitations, it will go a long way in your ability to set goals and boundaries for yourself and for your loved one.

Protect Your Health: It is critically important to maintain your physical and emotional health and well-being - if you don't who will? Your good health is the greatest gift you can give your loved one and your entire family.

Reach Out For Help: reaching out and asking for help is never a sign of weakness, rather it demonstrates strength and a keen awareness of your own abilities and sense of self.

Speak up for your Rights: NFCA encourages and stresses the importance of arming yourself with vital information regarding your loved one's diagnosis and treatment options. Having the proper information is the gold standard in achieving the ability to advocate for your loved one and developing strong self-advocacy skills. By keeping the goal of receiving quality healthcare and making it a priority, you can avoid future medical problems and create a superior quality of life for all involved.

At NFCA we realize first hand that caregiving can be difficult because most of us are current or former family caregivers. We understand that family caregiving requires the constant juggling of work, family life and maintaining our own autonomy. Without the adequate support, information, education and training, we cannot possibly maintain and continually meet the needs of our entire family.

Believe in Yourself - and Take Charge of Your Life

Family caregiving is about a relationship between many people. Choosing to take charge of your life means, you recognize that you are only one member of the caregiving team. Making active choices in your own best interests is not selfish; rather it is often the most important choice you can make for your entire family.

As we travel through life one thing is for certain we will meet head-on with "life changes." It is said, "Life happens while we are busy making plans." We can try resisting change; however, change is our constant traveling companion - and sometimes an unwelcome guest.

Unexpected changes tend to unnerve us and make us feel uncomfortable - it's like traveling through uncharted waters without a compass. At times change can make no sense - it either comes on too quickly or evolves too slowly. As we travel between life changes, it is the unfamiliar road in between when one route ends and a new route begins when we feel the most uncomfortable.

Becoming a family caregiver is one of those life changes, which can occur suddenly and without warning, or it can evolve slowly over time. However, regardless of the events, which place us in the caregiving role, it is the unfamiliarity of the uncharted waters, which cause us the most distress. If we choose to constantly fight change, we will struggle our entire lives. We need to find a way to embrace these changes or at the least accept them.

Protect Your Health

The best present you can give your loved one: Your own good health

Everyone is telling us to take responsibility for our own health. We hear it on TV and read it in magazines. Prevention is the message of the day.

Unfortunately, family caregivers as a rule do not always do a good job of taking care of themselves. We are always putting our loved one's health and well being first. After that, there is not much time or energy left for ourselves.

The research is clear! The extreme stress that many family caregivers experience has been shown to affect our immune systems making us more prone to chronic illnesses ourselves. It can cause premature aging and in some cases result in premature death.

• - If you are run down, tiring more than usual, will you be able to provide good care?
• - If you have a cold or the flu, will your loved one catch it from you?
• - If you become depressed will you be able to make good decisions, will life become unbearable?
• - If you are not well, who will fill your shoes, whether temporarily or permanently?

These are not questions to be taken lightly. Your own good health is the best present you can provide to the person you care for.

As caregivers, it is important we recognize and not ignore the physical and emotional symptoms which may impact our own health and well being. We need to guard against caregiver burnout and avoid becoming overly tired and exhausted, which can reduce our own body's ability to ward off illness.

It is important to remember to create balance between caring for others and caring for ourselves. But how? You begin by believing - truly believing - that protecting your health is an absolutely critical thing to do for yourself and your loved one. You may not be able to do this easily, especially if guilt tends to get in your way; but it is vital that you try.

• - Take a daily vitamin supplement
• - Get exercise -- make it a priority for both your mental and physical well-being.
• - Get regular check-ups and do not ignore possible symptoms of ill health.
• - Take a break from caregiving -- respite time is crucial.
• - Get a flu shot -- more information here
• - Watch for signs of depression -- more information here
• - Stay involved in hobbies
• - Laugh with a friend

If you are currently on Medicare, caring for someone on Medicare, or you will soon be eligible for Medicare, there is a new educational pamphlet, Medicare's Preventive Care Services (PDF) which contains information on free or low-cost preventive services and screenings as well as advice on managing cholesterol and ensuring heart health for you and your loved ones. To request a printed brochure via mail, send your request to NFCA, 10400 Connecticut Avenue, Suite 500, Kensington, MD 20895 or call 800-896-3650. Learn More about Medicare

Healthcare Checklist for everyone 50 or Older

The Agency for Healthcare Research & Quality (AHRQ) offers a checklist for men and women over 50 years old regarding screening tests, prevention medicine, and healthy lifestyle behaviors. Family caregivers of those 50+ may want to have this checklist to be sure that their loved one is addressing all the necessary healthcare issues as well as for family caregivers to care for themselves. The women's checklist is available at: www.ahrq.gov/ppip/women50.htm or www.ahrq.gov/ppip/men50.htm.

Reach Out for Help

In family caregiving circles, we hear a lot about the word support. Family caregivers regularly seek supportive relationships with other family caregivers. What support does not do however, is change the circumstances under which we are living. It does not relieve us from some of our caregiving responsibilities. That's the work of a different word - and that word is: HELP.

Providing help is something that family caregivers do every day. Often times we want to handle all caregiving chores in an effort to make things happen. Sometimes we view constant activity as a sign of strength and passivity as a sign of weakness. Often times the reverse is true. We need to learn how to define the help we need (PDF) and then to ask for help.

If we are constantly struggling, perhaps the universe is trying to tell us something. We have the right and the obligation, to ourselves, to reach out and seek help. Help can come in many forms such as:

• - Others pitching in and taking over simple chores.
• - Employers willing to work with you in balancing responsibilities and work schedules.
• - Acquiring educational materials to help you make sound decisions.

Researchers believe that only 2% of caregiving employees actually utilize the programs that are available to them and it is critically important to find out why. It is not a simple question. Part of the answer may lie in the nature of most of the programs being offered and part may be related to the psychology of what it means to be a family caregiver. If you are a family caregiver in the work place, try to reach out to the help that may be there waiting for you.

Speak Up for Your Rights

What does it mean to be an advocate? Being an advocate is a person who supports rights on behalf of another. One of the most important attributes on being an advocate for your loved one is the willingness and the ability to speak up and keep your eye on the ultimate goal, which is protecting the health and safety of you and your family. In the world of medicine, it is particularly important for all of us to become as educated as possible about how the system works and therefore be in a position to get the best care possible.

It would be nice if there was an indisputable instruction manual for family caregivers to follow but since each family's situation is unique, a "one size fits all" approach just doesn't work. On-the-job training tends to go with the territory of family caregiving and it often takes a great deal of time and energy to navigate through the sometimes-complicated medical care labyrinth. However, it can be manageable.

NFCA encourages family caregivers to become effective advocates for our loved ones as well as ourselves as one of the first steps to making our lives more manageable. We need to become empowered, proactive, creative and resourceful in acquiring the information and the help we need.

Originally published by the National Family Caregivers Association (NFCA). Reprinted with permission.

National Family Caregivers Association (NFCA) educates, supports, and speaks up for the more than 65 million Americans who care for loved ones with a chronic illness, disability or frailty. NFCA reaches across the boundaries of diagnoses, relationships and life stages to address the common needs and concerns of all family caregivers. For more information visit www.thefamilycaregiver.org.