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!