Finding Home Care Services

Home care services for people with cancer can range from a nurse to assist you with home administered treatment, to assistance with personal care and homemaking when you are not feeling well for an extended period of time.

Your doctor, nurse or social worker will help you understand what type of home care you will need. If your doctor has not suggested that you receive home care, but you feel you do need assistance, ask ! In order for certain home care services to be covered by insurance they must be "prescribed" by a doctor.

• Most communities have "home health" agencies that offer home care services. Some are nonprofit (for example, Visiting Nurse Associations), which may provide low-cost or free care; others are private agencies. Your social worker, oncology nurse, or doctor will usually know about home care agencies in your area.

• In cases where there is a need for a "skilled" nurse to help at home, the specialized services will be covered by insurance. Skilled nurse assistance and home health aide assistance are different levels of care therefore check with your insurance company and make sure you understand your coverage.

• If you need help but your insurance does not cover the type of assistance you need check with community agencies which usually provide a "sliding" fee payment scale that takes into account your income. Private agencies may also be willing to negotiate a lower fee if you are going to need them for an extended period of time.

• The National Association for Home Care has a helpful pamphlet titled " How to Select a Home Care Agency." Their website has a home care/hospice locator with more than 28,000 agencies listed to help you locate resources in your area.

• Also as a cancer patient home care services such as cooking, shopping and personal care may be available to you (regardless of age) through your local Area Agency on Aging. Also, many family service agencies such as Catholic Charities, Federation of Protestant Welfare Agencies and Jewish Family Services have community homemaker programs. Please note that community homemaker services are rarely covered by your health insurance carrier.

• If you prefer to pay for private home care check with your local church, synagogue or community organization first. They will know of trustworthy people willing to help you out in the home privately but remember to check all references and to discuss needs and responsibilities as well as clear payment arrangements upfront.

Understanding Signs of Caregiving Stress

Caregiver stress is a daily fact of life for many caregivers. Caregiving often takes a great deal of time, effort, and work. Many caregivers struggle to balance caregiving with other responsibilities including full-time jobs and caring for children. Constant stress can lead to "burnout" and health problems for the caregiver.

Here are just some of the signs of stress that caregivers and their friends and families should watch out for:

• Anger
• Guilt
• Anxiety/Irritability
• Exhaustion
• Inability to concentrate
• Depression
• Thoughts of harm to self or others
• Weight loss

If you are a caregiver who is experiencing any of the above, you should talk to your doctor as soon as possible. If you know a caregiver who has shown any of the above symptoms of stress and you feel comfortable talking with them about the possibility that they are overstressed, you may want to suggest that they visit their doctor. You might also want to volunteer to help out so they can find the time to visit their doctor.

You can screen yourself for depression using the free NMHA-sponsored online screening tool located at http://www.depression-screening.org/. This tool doesn't make a diagnosis, but it can help you determine whether you should consider seeing your doctor.

A fact sheet on caregiving and depression is available from the Family Caregiver Alliance at http://www.caregiver.org/caregiver/jsp/content_node.jsp?nodeid=393.

Oftentimes, a little help around the house or a break from caregiving is all that's needed to keep stress at manageable levels. Caregivers often need help caring for an elderly or disabled care receiver. Sometimes other family members or friends and neighbors are able to help, but many caregivers do most or all of the caregiving for a loved one alone.

Research has shown that caregivers often are at increased risk for depression and illness. This is especially true if they do not receive enough support from family, friends, and the community.

Talk to your doctor about caregiver stress he may have a list of useful referral sources for help in your local community. 

Navigating the Healthcare Maze

Most people - whether as patients, family caregivers, or health professionals - do not have a good idea of what medical insurance (assuming the patient has some) will pay for until the need arises. Family members and patients are often shocked to find that insurance will not pay for many services and items needed at home that are routinely paid for in the hospital.

Unless your relative has specific long-term care insurance (and very few people do at this point), many home care needs, especially home care aides or attendants, will not be covered at all or beyond an initial short-term period.

Know What Your Insurance or Managed Care Company Is Responsible for Covering

• If your loved one has been hospitalized, insist on being consulted by the discharge planner about the care plan before decisions are made.

• Explore all the options, not just the one the discharge planner recommends.

• Find out what your insurance company will approve for your loved one's care, why, and for how long.

• Try to get one person from the insurance or managed care company (a case manager) assigned to your loved one's case and make sure that person fully understands the patient's condition so that the correct home care services and equipment are provided.

• Look out for inconsistencies or vaguely described benefits. Do not let your insurance company deny coverage for something that has been covered in the past or that you believe should be covered.

• Keep detailed records of phone conversations and personal contacts about the case. Write down whom you spoke to, what they said, and when they said it. Insurance coverage decisions are often flexible. You may need to document interpretations you have been given by different people.

• If there is a home care nurse or aide assigned by an agency, make sure that person is experienced with your loved one's care and can handle the physical, behavioral, and technical aspects.

• Make sure you have been assigned the correct level of home care assistance. Registered nurses, practical nurses, and home health aides or personal care workers have different skills and limitations.

There are also different types of agencies, only some of which are Medicare - Medicaid certified.

Identify and Use All Available Resources

• Get to know your local pharmacist, who is an excellent and readily available resource.

• Familiarize yourself with print and Internet resources. Both books and Web sites provide excellent resources and can put you in touch with other people and community agencies that can help. There is a vast amount of information on the Internet, so be selective and use credible sources.

• Discuss your options with people outside of your network who have experienced your situation.

• Have friends and family help with some of your managerial chores - sorting out bills, reviewing insurance policies, etc. Do not let bills pile up.

Be Assertive About Your Rights

• You can say no if hospital discharge planners want to send your loved one home and you feel you are not prepared to provide the necessary care at home. Be flexible but firm as you negotiate a feasible plan.

• Request an aide or home care nurse to come to the hospital and help you bring your loved one home, including riding in the ambulance, setting up the bed and other medical equipment.

• Make sure your loved one has the proper transportation to and from outpatient visits. Ask for a re-evaluation of the situation at a specified time (a few weeks or months).

Recognize How the System Can Work Against You

• Administering the best possible care (i.e., changing dressings daily, using the most appropriate medications and providing other necessities) may be very costly. Such care may not be covered by your insurance policy. You will almost certainly have out-of-pocket expenses for things that are not considered "medically necessary."

• Instead of providing greater coverage, having two insurance policies could actually mean less coverage. Each plays against the other -- delaying or actually curtailing benefits. Make sure you have a clear agreement as to which payer is "primary."

• A spouse is legally responsible for the partner's bills and his/her income is included in determining Medicaid eligibility. Unmarried couples are considered as single individuals, making it easier to get Medicaid benefits, which may include home care.

• If someone tells you "Medicare (or another insurance) won't pay for it," don't stop there. Check it out yourself through your State Health Insurance Assistance Program, the Medicare Rights Center at (212) 869-3850 or online at www.medicarerights.org or through another independent source.

Contributed by Carol Levine, Director, Families & Health Care Project, United Hospital Fund

Caregivers: How To Communicate Your Needs

If you are a family caregiver, you know that much of your energy is focused on meeting the needs of the person you are caring for, and that focusing on your own needs may seem selfish. But preserving your health, getting a break, having time for yourself, none of these are selfish desires. They are part of what we all need to do, caregivers and non-caregivers alike.

It's important that caregivers don't try to do everything themselves. Asking for help may be difficult or even seem embarrassing, but you may discover that friends and family are not only willing, but even eager to help. And remember, asking for help means less stress for you, which almost always means you'll be a better family caregiver.

Net of Care, a service of Beth Israel Hospital's Department of Pain Medicine and Palliative Care, provides the following tips:

• Sit down with family members or friends in person or find a quiet time to talk to them on the phone.
• Discuss specific areas in which you think they could help.
• Clearly explain what they could do to help.

The American Academy of Family Physicians also provides some advice on communicating your needs and how to find help, as does the National Family Caregivers Association.

Communicating Effectively in the Hospital Setting as a Caregiver or Guardian

Caregivers know all too well the feelings of helplessness that often accompany their role of caring for a loved one with a chronic illness. When a hospitalization is involved, it is not uncommon to feel as though you have lost all control. There are steps you can take to ease the stress of a hospitalization and to ensure that you remain a part of the health care team should a hospital stay take place.

Most patients enter the hospital today as the result of a serious complication of a chronic illness or a life-threatening acute event. Because your loved one is likely to be seriously ill, there may be a great deal of uncertainty involved with his/her prognosis. Your loved one may experience a significant decline in function, and you may be forced to make crucial decisions without his/her input. By being proactive now, prior to any hospitalization, you will ensure that you and your loved one have a voice when it counts the most.

The Papers You Need: Having the proper legal documents in place is critical if you want to ensure that your loved one will receive the type of care he/she wants and needs. The following list outlines the basic documents we all should have.

• Durable Power of Attorney for Health Care: A durable power of attorney for health care, also known as a health care agent or proxy, is an individual you have appointed to make decisions about your medical care if you become unconscious or can no longer speak for yourself. A health care agent can be assigned as part of the advance directive form.

• Advance Medical Directive: An advance directive informs your physician and family members what kind of care you wish to receive in the event that you can no longer make your own medical decisions.

• Living Will: A living will is a type of advance directive that outlines what kind of medical treatment you want in certain situations. It only comes into effect if you are diagnosed with a terminal illness and have less than six months to live, or if you are in a persistent vegetative state. A living will does not, however, allow you to name someone to make decisions on your behalf.

• Do-Not-Resuscitate Order or DNR: Another conversation that should take place prior to any hospitalization involves your loved one's wishes regarding resuscitation (efforts to restart the heart after it has stopped). Does he/she want resuscitation to occur regardless of circumstances? What are his/her feelings about ventilators and other life-sustaining equipment? If the decision is made that cardiopulmonary resuscitation is not what your loved one desires, then a do-not-resuscitate order must be written by your physician. A DNR can be part of your advance directive.

If your loved one does not already have a living will or an advance directive, now is the time to discuss his or her wishes for end-of-life treatment. A durable health care power of attorney should be appointed before a crisis develops. In the event your loved one is incapable of making decisions, this individual will have the legal authority to act on his/her behalf.

Advance directives, living wills, and durable power of attorney forms are all simple documents to complete, and samples may be obtained through your local hospital, your attorney, or your state's attorney general's office. Your physician may also have copies of some of these documents. Signed copies should be given to your family physician. The documents must also be placed in the hospital chart each time your loved one is hospitalized.

Information You Need to Provide to Hospital Personnel: In addition to having the vital documents mentioned above, you can facilitate your loved one's transition to the hospital by providing the health care team with the following information:

• The patient's medical history, in writing.
• A list of the patient's allergies.
• A list of current medications and dosages.
• A list of all physicians and consultants who are caring for your loved one, along with phone numbers.

Providing this information immediately upon admission to the hospital can save crucial hours and improve communication. Often the hospitalization begins in the emergency room. The above information will ensure that in the busy emergency room setting, your loved one's care is facilitated and physicians familiar with his/her case are involved from the start.

The Health Care Team: As a family caregiver, you are a part of the health care team, which also includes the attending physician, the hospital nurses, and a hospital social worker or case manager. Each of these individuals, including you, has a role in the hospitalization. Stand up for your role on the team. The other members of the health care team need your input in order to evaluate, educate, prognosticate, advise, and treat your loved one. Here are four things you should do upon arrival at the hospital.

• Find out the name of the attending physician of record for your loved one. This is the individual who will be coordinating the care throughout his/her hospital stay. This physician will be the primary doctor on the case. The attending physician will be in communication with the other consulting physicians and know their recommendations.

• Sometimes it is necessary to talk to a consultant about a specific issue, but often the attending physician can summarize the entire treatment plan. Make sure you understand and agree with that plan. Don't hesitate to continue to ask questions until you feel comfortable with the answers. You may find it helpful to keep a running list of questions that you wish to discuss each time you see the physician.

• The first time you speak with the attending physician, make sure to find out the best way to get in touch with him/her. Who will initiate the phone contact? At what number can the physician be reached and what times are best to call? Make sure the fact sheet in your loved one's hospital chart contains your name and your correct phone numbers.

• Get to know the nurses who are caring for your loved one. They can answer your day-to-day questions and are an excellent source of information and support. Don't be afraid to ask the nurses about any new procedures or changes in your loved one's course of treatment. They are the natural starting point for questions, and will direct you to the attending physician when necessary. This will cut down on any frustration you might feel at not being able to reach your attending physician every time you have a new issue to discuss.

**Realize that the change of shifts is a very busy time for the nurses, so find out when the shifts occur and try to hold your questions until the nurse coming on duty has received his/her report.

Note: Many elderly patients, upon admission to a hospital, will experience disorientation in their new environment and may become uncooperative. They may sleep poorly and may be found wandering the halls in the evening. You may notice a deterioration in their concentration and memory. Don't panic. These reactions are common and the health care team is experienced in dealing with these challenges.

• As soon as you are able, speak to a hospital social worker or case manager, who will help you with any discharge planning issues. This includes what follow-up is necessary after you leave the hospital; who will be providing home health care, if necessary; what home health equipment you might need; and who will be paying for these additional expenses.

• Make sure you obtain the numbers of all home health companies providing goods and services and the names and numbers of companies that will deliver the equipment. A hospitalization may be the transition to a nursing home or hospice setting.

• The hospital social worker or case manager can help you make a smooth transition and can provide support for you, the caregiver, as well as for the patient.

Maintaining Some Control: Medicine is full of "lesser of the evils" choices, and at no time is this truer than when a chronically ill patient is hospitalized. The goal of hospitalization in these cases is often symptom management, with the understanding that the underlying problem cannot be fixed. The focus in the hospital will be on palliation and management rather than cure.

It is important for you, as the primary caregiver, to keep this in mind, and to strive to understand the risks and benefits of any proposed course of treatment. It is also your role to make clear to everyone on the health care team what your loved one's wishes are regarding short- and long-term treatment. By being more proactive in your communication, you will not only simplify everyone's job, you will maintain some degree of control. At no time is your role as caregiver more important than when you speak on behalf of the person you love.

CONTRIBUTED BY: Patricia L. Tomsko, MD a board certified in family practice, geriatrics, and hospice and palliative medicine, and Sandy Padwo Rogers a freelance writer and editor.

Ten Tips for Family Caregivers

(1) Choose to take charge of your life, and don't let your loved one's illness or disability always take center stage.

(2) Remember to be good to yourself. Love, honor and value yourself. You're doing a very hard job and you deserve some quality time, just for you.

(3) Watch out for signs of depression, and don't delay in getting professional help when you need it.

(4) When people offer to help, accept the offer and suggest specific things that they can do.

(5) Educate yourself about your loved one's condition. Information is empowering.

(6) There's a difference between caring and doing. Be open to technologies and ideas that promote your loved one's independence.

(7) Trust your instincts. Most of the time they'll lead you in the right direction.

(8) Grieve for your losses, and then allow yourself to dream new dreams.

(9) Stand up for your rights as a caregiver and a citizen.

(10) Seek support from other caregivers. There is great strength in knowing you are not alone.

Contributed by the National Family Caregivers Association

Caregiving Statistics You Should Know

Cancer affects millions of Americans each year. More and more working families are affected by the care of a family member with cancer. If you're a caregiver, you are not alone. You've probably heard that before, but you may not know just how much company you have. A recent study by the National Alliance for Caregiving and AARP found that 44.4 million Americans age 18 or older are providing unpaid care to an adult. If we had to pay for this care, it would cost approximately $257 billion per year.

The typical caregiver is a 46-year-old Baby Boomer woman with some college education who works and spends more than 20 hours per week caring for her mother who lives nearby.

• Female caregivers provide more hours of care and provide a higher level of care than male caregivers.
• Almost seven in ten (69%) caregivers say they help one person.
• The average length of caregiving is 4.3 years.
• Many caregivers fulfill multiple roles. Most caregivers are married or living with a partner (62%), and most have worked and managed caregiving responsibilities at the same time (74%).

Caregivers and Work

• Almost 60% of all caregivers either work or have worked while providing care.
• 62%  have had to make adjustments to their work life, such as reporting late to work or giving up work entirely.
• Male caregivers are more likely to be working full or part-time than female caregivers (66% vs. 55%)

Who Do Caregivers Care For?

• Most caregivers (89%) are helping relatives.
• Nearly 80% of care recipients are over fifty with the other 20% 18-49.
• Caregivers who help someone age 50 or older say the most common health problems the person they care for has are diabetes, cancer, and heart disease.
• One quarter of caregivers helping someone age 50 or older reports the person they care for is suffering from Alzheimer's, dementia, or other mental confusion in addition to a cancer diagnosis.

Caregivers' Unmet Needs

• The most frequently reported unmet needs are finding time for myself (35%), managing emotional and physical stress (29%), and balancing work and family responsibilities (29%).

• About three in ten caregivers say they need help keeping the person they care for safe (30%) and finding easy activities to do with the person they care for (27%).

• One in five caregivers say they need help talking with doctors and other healthcare professionals (22%) or making end-of-life decisions (20%)

What is Family Caregiving?

Family caregiving is the bedrock upon which this country's healthcare system depends. The services provided by family caregivers represent 80% of all home care services and are conservatively valued at $257 billion a year, more than twice the amount spent on paid home care and nursing home services combined.

Family caregiving is the bedrock upon which this country's healthcare system depends. The services provided by family caregivers represent 80% of all home care services and are conservatively valued at $257 billion a year, more than twice the amount spent on paid home care and nursing home services combined.

Family caregivers provide a vast array of emotional, financial, nursing, social, homemaking, and other services on a daily or intermittent basis. The National Family Caregivers Association has developed this "Caregiving Is" list to give you an idea of just how varied and complex family caregiving can be.

Caregiving itself is a multi-dimensional puzzle. For some it means providing 24-hour care for someone who can't dress, feed, go to the bathroom, or think for himself or herself. For others caregiving is an emotional roller coaster because a diagnosed condition has not exhibited debilitating symptoms - yet.

• Caregiving can go on for a few years or for a lifetime. It means re-evaluating finances, re-evaluating job opportunities and making compromises.

• Caregiving is learning how to work with doctors and other healthcare professionals so they treat you as an important member of your loved one's healthcare team.

• Caregiving is worrying about what's wrong with dad. Why is he not remembering things anymore? Why is he acting so strangely? And then when you hear the diagnosis, your immediate reaction is you wish you had never asked.

• Caregiving includes learning about wheelchairs, and lifts and little gadgets that help you button a shirt.

• Caregiving is wondering why no one ever asks how you are.

• Caregiving is dreaming about being alone in your own house.

• Caregiving involves learning about Medicare, Medicaid, social security and other public programs.

• Caregiving is learning what it means to die with dignity and making sure that your loved one's wishes will be honored.

• Caregiving is the joy you feel when your child with mental retardation or a developmental disability learns a new skill.

• Caregiving is the joy you feel when your spouse says he/she felt good today.

• Caregiving is the relief you feel when your mother decides its time to move out of the big house and into an assisted living complex.

• Caregiving is hard work. Caregiving is physical and emotional pain.

• Caregiving is loving and giving and sharing.

• Caregiving is accepting and learning new things and going on, and on, and on.

• Caregiving is lots of questions and very few answers.

• Caregiving is being out of the mainstream.

• Caregiving is all these things and a whole lot more

You don't have to deal with all these feelings and responsibilities alone. Contact The National Alliance for Caregivers today.

November is National Caregivers Month

In 1994, the National Family Caregivers Association began promoting the celebration of family caregivers during the week of Thanksgiving. President Clinton signed the first presidential proclamation in 1997 and every president since - Democrat and Republican alike - has issued an annual proclamation appreciating family caregivers. As interest grew in family caregiving issues, National Family Caregivers Week became National Family Caregivers Month.

Day in and day out, more than 65 million family caregivers in this country fulfill a vital role on the care team. No one else is in a better position to ensure continuity of care. Family caregivers are the most familiar with their care recipients’ medicine regimen; they are the most knowledgeable about the treatment regimen; and they understand best the dietary and exercise regimen.

NFCA coordinates National Family Caregivers Month as a time to thank, support, educate and empower family caregivers. Celebrating Family Caregivers during NFC month enables all of us to:

• Raise awareness of family caregiver issues
• Celebrate the efforts of family caregivers
• Educate family caregivers about self-identification
• Increase support for family caregivers

"The true strength of the American family finds its roots in an unwavering commitment to care for one another."

President Barack Obama, 2009's NFC Proclamation Stevie JoEllie's Cancer Care Fund Celebrates and Applauds all family caregivers this and every November. Thank You!

Understanding Chronic Health Conditions: Part 4

One of the hardest things to do when you are an independent person and someone who has always worked for a living is adjusting to life with a chronic health condition that limits your ability to function on a daily basis. At it's best a slower pace is going to help you manage your condition and remain functionally fit for a longer period of time. At it's worst is going to make you question your self worth and your purpose in life.

I am one of those people who felt that perfection in everything I did was my ticket to love, respect and value as a person amongst my family, friends and co-workers. I had the perfect house; always clean and fresh smelling, everything in it's place and magazine picture ready. I was the best employee my boss ever had; punctual, detailed, effective and always the first to come in and the last to go home after hours. I put so much of me into everything I did and everyone I loved I had nothing left for myself.

When I finally had to accept that the doctor was right and that I was sick I had ran myself into a very delicate medical state. When I finally recognized myself as a chronically sick person because I could no longer performed at the level of "perfection" I imposed on myself it was a very sad day for me. When I finally surrendered what I expected and traded it for what I needed to do to be able to function at my personal best with a chronic health condition I discovered that my life had not ended it had simply changed.

ADJUST YOUR LIFESTYLE ACCORDINGLY

1. Pace yourself, and try to stick to a fairly regular schedule.
2. Take note of when you are overtired or overanxious, and try to modify your activities accordingly.
3. Prioritize activities, and don't overextend yourserlf.
4. Ask for help when help is needed; seek out support programs in your community or online if necessary.

EAT PROPERLY AND EXERCISE

• Ask your doctor if there is a special diet you should follow, foods that you should avoid or foods that are specially good for you.

• Get treatment for dental problems promptly such as missing or loose teeth, gum disease or tooth decay that may interfere with eating or get a dental check up if you have not had one in the past year.

• Get treatment right away for any condition or sympton that interferes with eating such as heartburn, constipation, diarrhea, nausea, trouble swallowing and changes in appetite or eating habits as they may signal another problem.

• Maintain activity levels as much as possible. Talk to your doctor about specific exercises or physical therapy that might help you manage your symptoms and maintain a healthy weight. Stretch. Walk. Take deep breaths and slowly release several times a day. Swim or join a water exercise program. Garden or Dance. Anything that will keep you moving and preserve you lung capacity if good for you.

REST AND SLEEP

More than half of people over age 40 report sleep problems related to stress, which can significantly affect quality of life, cause great distress, impair memory, concentration and alertness.

Sleep problems may be a sympton of a medical condition or psychiatric disorder -- most commonly depression -- or may be side effects of medications

Talk to your doctor if you notice changes in your sleep pattern that persist for more than two weeks, such as difficulty falling asleep, waking up frequently during the night or waking too early in the morning.

Understanding Chronic Health Conditions: Part 3

GET THE RIGHT MEDICAL CARE FOR YOUR CONDITION

• Seek out the right doctor for you, preferably someone who is experienced in dealing with your condition.

• Investigate whether you might be best served by a specialist as your primary caregiver, and understand which specialist is best for your you (for example, a neurologist specializing in stroke may be more appropriate for managing stroke than a general neurologist).

• Ask about specialized recovery programs,such as stroke rehabilitation to recover lost function or physical therapy to increase mobility or reduce pain. Remember that some head and neck or brain cancer patients can and many do loose neurological function very similar to stroke patients.

• Be prepared for doctors visits.Write down your questions and keep a health journal (see below) so you can answer the doctor's questions accurately, and make relevant questions specific to you.

• If you are seeing more than one doctor be sure they all know what medications or other therapies the other doctors have prescribed and why. It is useful to keep a copy of the lab results from one doctor to show the next with you during your visit so that you don't undergo repeat tests before time but also for your overall care.

• Finally, follow your doctor's orders carefully, including how and when to take medications and what to do if you miss a dose.

Continuously Monitor Your Health 

This is not a useless lethany of "worry-wart" complaints or defeated "pity-party". It is a partnership with your doctor for health care managment that will help you both better communicate and help each other decide what's next. Use a health journal, booklet, calendar or notebook devoted exclusively to medical notes and information to:

• Record symptons: including when they occur, their severity and what activities might be triggering them;

• Keep track of doctors visitsand take notes about impotant comments or suggestions during a visit; and

• List your medications and any other therapies, and make note of any side effects.

• Remember to bring the health journal to your medical appointments, and share any relevant information from your journal with your doctor and/or nurse.

Understanding Chronic Health Conditions: Part 2

An Unfamiliar Road:

Living with a chronic illness is not unlike driving down an unfamiliar road; you are never quite certain what lies ahead of you. It's important to remember that even unfamiliar roads can be negotiated, and the same is true of chronic illness. There are maps that show you where you're going, guidebooks to help you know what to do along the way, and other people who have been down the road before you. Knowing what to expect and doing what you can to cope with whatever comes your way can help you negotiate the road ahead.

Taking Control:

Living with a chronic condition can pose enourmous challenges, physically, emotionally, and financially. But your illness doesn't have to control you. There are many ways to gain better control of your health and maintain the best quality of life possible, and many places to turn to for help (I will include a resources list at the end of this article series).

Chronic illness may demand adjustments in many aspects of your life, and learning to accept and cope with that fact is part of the process of managing your illness. Remember, you don't have to do it all at once: set achievable goals for yourself and take one step at a time!

Understand Your Illness:

1. Ask your doctor for information; a good doctor that cares about his patients long term wellness should be able to provide materials or recommend books, articles and websites that will be useful to you. I have "fired" more than one doctor who was too busy to talk to us and offer guidance in accessing useful resources for patient and caregiver education.

2. Visit your local library or bookstore to research yoru condition. You want to ask the right questions and understand what alternative care and supportive therapies are clinically sound and helpful in your individual case. By learning as much as you can you will be able to have a useful conversations with your healthcare team from the start.

3. Learn what symptons to expect how to manage them, and what might cause them. It will help you greatly if you can prepare yourself emotionally, spiritually and intellectually for the daily challenges that may or may not become a part of your life eventually. Learn how to identify signs and symptons of progression, what is your new "normal" and what isn't.

4. Contact relevant organizations and ask about free information packets, support groups and referrals to other organizations that may offer free services and useful resources in areas which you may need help and guidance. (I have a number of useful resources, links and articles listed in our blog and I will include a new one in this article series at the end.)

Join a Support Network or Group:

Several small studies of people with metatastic breast cancer or melanoma showed an association between participation in support groups and longer life. Not just longer life for longer life's sake but quality of life!

Many patient organizations coordinate support networks; try to find one that deals with your individual major specific condition as the lead support system and if possible, secondary support groups for your co-existing disorders.

Learn how other people deal with common problems and what strategies they have found useful for managing symptons. common problems and coping with lifestyle adjustments.

I belong to an autoimmune condition support network as my primary source of personal support, a group for reproductive cancer survivors, a traumatic brain injury survivors caregivers alliance and I check in from time to time with a cancer moms network. They have all helped me tremendously in different areas of my life and I am sure they can be very helpful to you too.

About the Author: Wilma Colon Ariza is the founder of Stevie JoEllie's Cancer Care Fund a Thyroid Cancer Awareness, Access to Care and Free Supportive Services Nonprofit

Understanding Chronic Health Conditions: Part 1

My grandmother used to say that if you have lemons you best made some darn good lemonade. It was her version of a commonly used metaphor for making the best of things, specially under difficult circumstances. A gentle, kind hearted and hard working woman that made me laugh the very night before she died, I try to remember and honor her when I feel like giving up and simply can't imagine anything else going wrong.

If you are living with a chronic health condition you are not alone! By some estimates, half of all Americans - 125 million people - suffer from at least one chronic condition. Think about it; almost one in four people live with more that one illness for over half of their lives.

Chronic, by definition, means long lasting or recurring. Examples of common chronic health conditions include arthritis, diabetes, depression, heart disease, Alzheimer's and cancer. Yes, Cancer! Many of our blog followers know that my family has been touched by cancer more times than I care to count and that I have a personal interest in progressive neurological conditions because of my own degenerative autoimmune disorder and my 20 year old son's traumatic brain injury, in this article series I will focus on brain related disorders, but the general guidelines discussed may apply to any chronic health condition.

For more than one third of Americans - some 40 million people- chronic illness takes the form of a brain disorder. These disorders are most commonly the result of damage to brain tissues such as in stroke or head injury and/or progressive dysfunction and death of nerve cells or neurodegeneration, such as occurs in Alzheimer's, Multiple Sclerosis, Parkinson's, Head and Neck or Brain Cancers and in some autoimmune conditions.

As we age, our brains become more vulnerable to many brain disorders but more and more Americans are increasingly affected at any age due to brain injury, cancer, cancer treatment sequale and autoimmune conditions. In some chronic neurological, autoimmune or brain disorder illnesses, physical signs begin gradually, and may not be noticeable for years. Symptons may be mild or severe, frequent or infrequent, or they may not be evident at all on a day to day basis.

Because so many factors affect the course of a chronic illness- including some within our control and some that we cannot control-- it may be very difficult to predict how we will feel from one day to the next and therefore our best intentions and efforts are often derailed. For people on the "outside" looking in it may be difficult to understand and accept our limitations. I am often told I don't look sick and I just need to get better organized ! I have given up trying to explain myself because I realize that there are people who have will never, ever understand no matter how much medical and scientific evidence is shared with them.

I have neglected this blog, our twitter account and our Facebook page these past few weeks, preoccupied with the business of relocation, Stevie JoEllie's next surgery on Monday, her continuing cancer treatment and monitoring, my son's future as a traumatic brain injury survivor burdened with the uncertainty of what, where and how the next health crisis or day to day living situation will change if my stress related exacerbations continue to limit my ability to physically function in a new city where we don't really know anyone except a few busy relatives.

Where to go for help if we need it? How to get around if I can't drive and the kids are not feeling well? Household chores and unpacking ? Errands without a car for a few months? Recreational activities with health issues? Walking my dog, finding an affordable vet and a friendly groomer? Even in the face of these initial concerns and questions the move is our best alternative in the face of mounting medical bills living on a fixed income. I realize all these things will be resolved as we settle in and worrying will get me nowhere except clinically dysfunctional. So every now and again I have to disconnect and recoup!

If you are having trouble recognizing your are a "chronically" sick person then you are going to have a harder time adjusting to the everyday challenges of your life. Saying yes I have a chronic illness is not an easy thing to do but the road to functional fitness and control begins with admitting you are indeed a chronically sick person and arming yourself with the right information and resources for personal and family support. It does not mean you are giving up and simply having a pity party every chance you get.

If you are a family caregiver of a chronically sick person or you love someone who is chronically sick you will benefit from this article series because of the nature of the information I plan to share that will help you better understand the day to day challenges you will both share and gain or feel some sense of control over how you choose to react to the new reality or your relationship and your loved ones life. I hope you do consider sharing these articles with those closest to you so that it opens up a difficult conversation many families don't know how to begin to have.

It is important to remember that half of all Americans live wiht at least one chronic health condition, even as the rate of disability among adults is droppin. Recognizing that you may have a chronic illness is the first step in getting the help you need. Understanding the "what, when, why and how" of your illness can go a long way toward helping you learn how to cope, manage symptons as best you can, and make appropriate lifestyle adjustments. All of these steps will help put you in the driver's seat so that you CAN take charge of your condition and regain control over your life.

About the Author: Wilma Ariza is the founder of Stevie JoEllie's Cancer Care Fund a thyroid cancer awareness, access to care and free supportive services nonprofit.

The Uncertainty of Thyroid Cancer

Cancer can lead to uncertainty in many areas of your life, and this may be a cause of some of the emotions that you have. Feeling that we have some control over our lives gives us a sense of security and allows us to enjoy things that we do. It’s natural to want to know what is likely to happen to us, so that we can plan for our future.

When cancer is diagnosed, it can take away your sense of security and control and this can be very frightening. Uncertainty can be one of the hardest things to deal with and can cause a lot of tension. You may find that you feel irritable, angry and frightened. Sometimes it can help to find out as much as possible about the illness and what may happen. It is best to discuss this with the doctors and nurses who know you and are involved in your treatment. You can also ring our helpline and talk to one of our nurses about your situation.

Often, it’s difficult to know whether treatment will be successful and whether the cancer can be cured. Once treatment has ended you may be left wondering whether it will come back. This uncertainty can make it very hard to plan ahead and you may wish that you could know for sure what will happen.

Unfortunately, it is often impossible to know whether a person has been permanently cured of their cancer. If someone's cancer has come back it is often difficult to say exactly what effect it will have and how long they will live. You may find that your doctors and nurses can't answer your questions fully or that their answers sound vague. Many people find this uncertainty very hard to cope with.

If you find that the uncertainty is a continuing problem and you feel overwhelmed by it, it may help to talk to a counsellor or psychologist. They can help you to find ways of coping with the feelings and emotions that it causes.

If you have been diagnosed with cancer and think that you may die, sorting out your affairs so that things are in order and you know that friends or family will be alright can also be helpful. This may be very difficult and painful for you, members of your family and friends.

Instead of fighting the battle by yourself, you can find a thyroid cancer support group of people who are dealing with similar issues. Support groups are even available online.

Putting things in perspective, gaining self-control and finding support:

(1) Gather more information about risk factors for thyroid cancer. Two of the most common risk factors are exposure to radiation at an early age or a diet low in iodine.

(2) Know that there are many support groups for thyroid cancer survivors and the recently diagnosed. Many of these groups are available as online forums in popular social media channels such as Facebook, MySpace and LinkedIn.

(3) Speak with a nutritionist about the diet you should follow before your treatment. In general, thyroid cancer patients usually should eat foods high in calories and protein. If you are scheduled for Radioactive Iodine Therapy or Scan you should talk to your doctor about a Low Iodine Diet which is required 2 weeks prior to the procedure. 

(4) Contact local hospitals and inquire about thyroid cancer support groups and general support groups. Hospitals are one of your best sources for local information in your community.

(5) Start your own support group. You can create your own Web site to start an online support forum or establish a local group by working with your hospital to advertise your group's presence.

Finally, you can join our online community on Facebook http://www.facebook.com/sjccfthynet

Thyroid Health Problems Overview

The thyroid gland is located on the front part of the neck below the thyroid cartilage (Adam's apple). The gland produces thyroid hormones, which regulate body metabolism. Thyroid hormones are important in regulating body energy, the body's use of other hormones and vitamins, and the growth and maturation of body tissues.

Diseases of the thyroid gland can result in either production of too much (overactive thyroid disease or hyperthyroidism), too little (underactive thyroid disease or hypothyroidism) thyroid hormone,thyroid nodules, and/or goiter. All types of thyroid problems in women are much more common than thyroid problems in men.

• Production of thyroid hormones: The process of hormone synthesis begins in a part of the brain called the hypothalamus. The hypothalamus releases thyrotropin-releasing hormone (TRH). The TRH travels through the venous plexus located in the pituitary stalk to the pituitary gland, also in the brain. In response, the pituitary gland then releases thyroid-stimulating hormone (TSH) into the blood. The TSH travels to the thyroid gland and stimulates the thyroid to produce the two thyroid hormones, L-thyroxine (T4) and triiodothyronine (T3). The thyroid gland also needs adequate amounts of dietary iodine to be able to produce T4 and T3.

• Regulation of thyroid hormone production: To prevent the overproduction or underproduction of thyroid hormones, the pituitary gland can sense how much hormone is in the blood and adjust the production of hormones accordingly. For example, when there is too much thyroid hormone in the blood, TRH and TSH production are both decreased. The sum effect of this is to decrease the amount of TSH released from the pituitary gland and to reduce production of thyroid hormones from the thyroid gland to restore the amount of thyroid hormone in the blood to normal. Defects in these regulatory pathways may result in hypothyroidism (underactive thyroid problem) or hyperthyroidism  (overactive thyroid problem).
  
  
• Thyroid goiter: Thyroid goiter is any enlargement of the thyroid that can occur with hyperthyroidism or hypothyroidism but also with benign and malignant (cancerous) nodules. Worldwide, the most common cause of goiter is iodine deficiency. Although it used to be very common in the U.S., it is now less common with the use of iodized salt. Multiple nodules in the thyroid are very common, but only about 5% of the nodules are a thyroid cancer. Thyroid cancer is diagnosed after a thyroid ultrasound exam and a needle aspiration biopsy of the nodule.

Pregnant? Talk To Your Doctor About Thyroid Health Conditions Today

Hypothyroidism in Pregnancy

Newly diagnosed hypothyroidism in pregnancy is rare because most women with untreated hypothyroidism do not ovulate or produce mature eggs in a regular manner, which makes it difficult for them to conceive.

It is a difficult new diagnosis to make based on clinical observation. The signs and symptoms of hypothyroidism (fatigue, poor attention span, weight gain, numbness, and tingling of the hands or feet) are also prominent symptoms of a normal pregnancy.

Undiagnosed hypothyroidism during pregnancy increases the chance of stillbirth or growth retardation of the fetus. It also increases the chance that the mother may experience complications of pregnancy such as anemia, eclampsia, and placental abruption.

Probably the largest group of women who will have hypothyroidism during pregnancy are those who are currently on thyroid hormone replacement. The ideal thyroxine replacement dose (for example, levothyroxine [Synthroid, Levoxyl, Levothroid, Unithroid]) during pregnancy may rise by 25% to 50% during pregnancy. 

It is important to have regular checks of T4 and TSH blood levels as soon as pregnancy is confirmed; and frequently through the first 20 weeks of pregnancy to make sure the woman is taking the correct medication dose.

Hyperthyroidism in Pregnancy

Newly diagnosed hyperthyroidism occurs in about 1 in 2,000 pregnancies. Grave's disease accounts for 95% of cases of hyperthyroidism newly diagnosed during pregnancy.

As with hypothyroidism, many symptoms of mild hyperthyroidism mimic those of normal pregnancy. However, anyone experiencing symptoms such as significant weight loss, vomiting, increased blood pressure, or persistently fast heart rate should have blood tests to evaluate whether hyperthyroidism is present.

Untreated hyperthyroidism does cause fetal and maternal complications including poor weight gain and tachycardia (an abnormally fast heart rate).

Treatment of hyperthyroidism during pregnancy is primarily medical.Propylthiouracil or methimazole (Tapazole) are the usual first-line agents to block the synthesis of thyroid hormone. They appear to be equally effective and have the same rate of side effects. The rate of side effects of each medication is not increased in pregnancy.

Iodine will cross the placenta, so its use in either a thyroid scan or in treatment with radioactive iodine is prohibited in pregnancy. One positive note for women with hyperthyroidism is that those with Grave's disease or Hashimoto's thyroiditis may have improvement in their symptoms during pregnancy.

Goiter in Pregnancy

It is common for a goiter to enlarge slightly during pregnancy. It is more common when the mother lives in an area of iodine deficiency. In the United States, the average intake of iodine is adequate but can be low if someone avoids consumption of milk, eggs, and iodized salt. Not all prenatal vitamins contain iodine, but it is recommended that only prenatal vitamins that contain iodine should be used during pregnancy.

Postpartum Thyroid Disease

Some women may have thyroiditis that usually occurs within 3 to 6 months after giving birth. It also may occur after miscarriage. The classic clinical picture is a woman who will first have symptoms of hyperthyroidism, followed by hypothyroidism, culminating in normal thyroid function.

Women with type I diabetes have a 25% risk of developing postpartum thyroid dysfunction.  Consult your doctor if you have symptoms of hypothyroidism or hyperthyroidism after pregnancy or miscarriage.

AWARENESS VIDEO: Life with Thyroid Disease

The first ever International Thyroid Awareness Week (25 - 31 May 2009) aims to raise awareness and educate people about the critical role the thyroid gland plays in our wellbeing.  There are millions of people across the world who may be suffering needlessly because they are unaware of the symptoms or impact of thyroid problems. 

To Learn More Visit: www.thyroidweek.com. 

Long Term Risks of I-131 RAI Treatment

In general, RAI (radioactive iodine) is a safe and effective treatment for the thyroid disorders mentioned in the prior blog posts. When RAI is used as treatment for hyperthyroidism, it is difficult to avoid development of hypothyroidism. Hypothyroidism is, therefore, watched for by your medical team and quickly treated with thyroid hormone pills.

Your doctor should discuss with you the risk of a small increase in the risk of developing thyroid cancers after RAI treatment for hyperthyroidism, although this has not been seen in all studies conducted, enough variables have been documented to warrant an informed discussion about the risk versus the individual benefits of RAI treatment for hyperthyroidism.

Although radiation kills cancer cells, it can also damage normal tissues and, over time, transform a small percentage of normal cells into cancer cells. This "second cancer" (if you are a thyroid cancer patient) develops in or near the previously treated radiation field, usually ten years or longer after initial radiation treatment has ended. The most common type of radiation induced cancer is sarcoma.

Importantly, then is that you must always remember that once you have been treated with RAI for any reason at all you need to have regular exams by your physician for the rest of your life. If you change doctors, see a dentist or have any emergency room treatment you must make sure you advise the treating provider that you have received RAI and when.

Doses of RAI used to treat thyroid cancers can cause permanent problems with the salivary glands leading to loss of taste and dry mouth. However, precaustions are taken to try to prevent these issues (i.e. using lemon drops or sour candy regularly for the first 14 days after RAI treatment). Temporary or permanent decreases in blood cell counts can also occur.

SPECIAL CONCERNS FOR WOMEN 

RAI, whether I-123 or I-131, should never be used in a patient who is pregnant or nursing. RAI given during pregnancy can damage the fetus (baby) thyroid gland. RAI given to a woman who is nursing can get into the breast milk and therefore expose the baby to radiation. Also, pregnancy should be put off a minimum of 6 months and preferably 12 months after RAI treatment since the ovaries are exposed to radiation during RAI treatment. Women who have not yet reached menopause are asked to fully discuss these precautions about the use of RAI with their doctors. There is no clear evidence that RAI leads to infertility.

SPECIAL CONCERNS FOR MEN

Men who receive RAI treatment for thyroid cancer may have decreased sperm counts and temporary infertility for periods of roughly 2 years. A doctor may discuss sperm banking with male patients who are expected to need several doses of RAI for thyroid cancer treatment.

GENERAL PRECAUTIONS FOR EVERYONE

Since I-131 RAI produces radiation, patients must do their best to avoid radiation exposure to others, particularly pregnant women and children under the age of 18, especially infants and small pets. Therefore, there are certain precautions that patients who have been treated with RAI are expected to follow after their treatment. These guidelines comply with the Nuclear Regulatory Commission and will be reviewed with patients by the medical institutions giving treatment on a case by case basis according to the dose used for individual patients.

Importantly, the amount of radiation exposure markedly decreases as the distance from patients increases. Patients who need to travel within six months from the time after receiving I-131 treatment and/or expect to visit federal government buildings are advised to carry a letter of explanation with them from their doctors. This is because radiation detection devices used at airports or in federal buildings may pick up even radiation levels considered safe and non-harmful to others.

I-131 Basics: Radioactive Iodine in the Treatment of Thyroid Cancer

As you probably already know, as a follower of my blog and facebook pages, my baby girl (22 years old, but forever my baby anyway) is a metastatic thyroid cancer patient. Most people simply assume that since thyroid cancer is generally referred to as a type of cancer with high cure rates and survival statistics, it is not a cancer we need to concern ourselves with much.

Well I hate to be the one to have to wake you up from the "fantasy" of a cancer many insensitive medical professionals and ill informed people call the "best cancer you can have".

~~Cancer~~ a devastating word to hear, and a phenomenally frightening diagnosis to deal with emotionally, physically and financially no matter the type, stage or age at onset.

In the case of thyroid cancer, the fastest increasing newly diagnosed cancer in America today, the many long term unknowns for the growing number of young survivors is not as reassuring as orignally thought of. A growing number of young people are developing persistent and/or recurrent cancer in the thyroid bed, many are developing metastatic disease like my daughter. Some may be genetically predisposed to the condition, many others will never know why they hit "the thyroid cancer lottery" at all. Yet another small percentage of survivors will develop another type of cancer somewhere down the line as result of the treatmetn they receive to treat the original thyroid cancer at an early age.

In this section/article I will share with you what nobody told me and you should know about I-131 RAI Treatment for thyroid disorders is the isotope used to destroy both normal and cancerous thyroid tissue.

1. NORMAL THYROID TISSUE:

Small doses of I-131 (5 t0 30 millicures, mCi) are given to destroy or "ablate" overactive thyroid tissue. This usually turns an overactive thyroid gland, with time, into and underactive thyroid gland. Doses of I-131 in the middle range (25 to 75 mCi) may be used to shrink large thyroid glands or goiters that are functioning normally but are causing breathing problems because their large size my compress the trachea (windpipe).

Patients must go directly home after I-131 RAI treatment, although they are asked to follow certain precautions. Temporary worsening of hyperthyroid symptons may occur within the first two weeks of I-131 treatment for hyperthyroidism, which can be easily treated with medicines called beta blockers. This medicine will be prescribed by your doctor. It is also common for patients to experience some temporary discomfort in the thyroid gland or lower neck area within 1 to 14 days after I-131 treatment for hyperthyroidism.

The discomfort may mimic the feeling of a sore throat. Aspirin, Ibuprofen (Advil) or Acetaminophen (Tylenol) may be used to treat discomfort. These side effects may last up to two weeks. The RAI treatment may take up to one to six months to have it's full effect. A small percentage of patients may require a second course of treatment.

2. THYROID CANCER TREATMENT:

Ablative doses of I-131 RAI (50 to 120 mCi) are usually given to destroy any remaining normal thyroid tissue that is commonly left following thyroidectomy. Because of the vital structures in the area of the thyroid gland, the surgeon may leave a small amount of thyroid tissue or gland behind, specially to preserve the tiny parathyroid glands that are embedded along the posterior (back side) of the thyroid gland. The remaining thyroid tissue will usually out-compete any thyroid cancer for the I-131 uptake ! Therefore, any residual thyroid tissue must be removed before persistent thyroid cancer or spread of thyroid cancer (metastatic disease) may be evaluated.

A post ablation thyroid scan is performed 10-14 days after thyroid ablation therapy which may show a large thyroid tumor, but mainly serves as a baseline study for future comparison. Larger doses of I-131 (80 to 200 mCi) are used to destroy residual thyroic cancer or any spread of the tumor to other sites or internal organs (metastatic disease). I-131 has been referred to as the "magic bullet" for treating most common types of thyroid cancer but as with any cancer early detection and early treatment are key in the race to cure theses types of cancers. In the case of my daughter Stevie JoEllie, but rarely in most cases, even higher doses of I-131 are given and most hospitals will generally keep you isolated in a special room anywhere from 24 hours to a few days to avoid exposing other people to radiation.

Please remember unless you receive unusually high doses of I-131 you will be allowed to return home the same day you receive your treatment, although precautions should be taken if you have small children or pets in your home, it is perfectly safe for most patients receiving small to medium I-131 doses to rest at home for a few days before returning to their regular activities. Keep in mind that since salivary glands weakly concentrate iodine, no matter what dose of I-131 you receive, there may be discomfort and swelling of the salivary glands. This can be prevented or greatly reduced by sucking on lemon drops or sour candies for up to 2 weeks after your I-131 treatment.

3. RADIATION EXPOSURE PRECAUTION INSTRUCTIONS AFTER I-131

This list outlines radiation exposure precautions to observe to minimize risks for your family, friends and co-workers after treatment. Please remember to consult your doctor and follow his instructions for YOU -- the precaution durations vary according to the dose of I-131 you receive.

ACTION DURATION

• Drink 12 -8oz glasses of fluids daily 2 to 7 days
• Do not prepare food for others 2 to 7 days
• Do not share utensils with others 2 to 7 days
• Flush toilet 2 to 3 times after each use 2 to 7 days
• Keep a distance of 6 feet from children 2 to 7 days
• Keep a distance of 6 feer from pets 2 to 7 days
• Sleep in a separate bed or room 2 to 11 days
• Avoid close physical contact such as hugs 2 to 11 days
• Avoid kissing and/or sexual activity 2 to 11 days
• Limit time in public places 2 to 7 days
• Delay return to work or school 2 to 7 days
• Do not travel by airplane of public transportation a minimum of 7 days but up to 14 days
• Do not travel on prolonged car rides or bus rides a minimum of 7 days but up to 14 days

FOR MORE INFORMATION TALK TO YOUR DOCTOR ABOUT HIS PERSONAL RECOMMENDATIONS FOR YOUR SPECIFIC CASE.

About the Author: Wilma Ariza is the founder of Stevie JoEllie's Cancer Care Fund a thyroid cancer awareness, access to care and free supportive services for thyroid cancer patients and survivors nonprofit