The Caregiver

Eight Steps for Family Caregiving - Part 4

Dan Tobin, M.D. — Wed, 28 Oct 2009 21:35:13 +0000

Connecting the Dots - What Care Coordination is All About

OK, so you now understand your parent's doctors' treatment plans (Step 1) and you have acquired a certain proficiency in gathering medical information (Step 2) and non-medical information (Step 3) specific to your personal situation. The next step is pulling everything together - multiple doctor's appointments, tests, procedures, medical information, home care services, medication management, devices, and as many other services as your aging parent requires to be safe at home, wherever home is.

Step 4: Linking medical and non-medical needs and creating an active problem list

Medical care is fragmented and medical service providers do not always have the time or ability to communicate with each other about your parent's care. You will probably see any number of health providers for different reasons. Primary care physicians, specialists, nurse practitioners, home care providers, pharmacists, and others are all looking at different aspects of the illness.

Coordinating all your parent's multiple doctor visits, tests, procedures, medical information, home care and other services is a daunting task, and one of the most important in keeping your parent safe. If you and your family can possibly afford it, hiring a personal, professional care manager is an investment that will save you much time and stress - and possibly guide you to resources and benefits you may not know about.

Few doctor's offices are set up to perform care coordination services that link activities outside of the office setting, which impacts your parents well-being in their home. Many doctor's offices do coordinate medical care for their own services and try to integrate information from other healthcare providers. However, the link between the physician's office and other providers is seldom routinely coordinated with an electronic record. And at best, this will deal only with medical needs.

Some examples of when you will need to link medical and non-medical services include:

• When your parent is being discharged from the hospital.
• When your parent has a chronic illness and you want to make the most of healthcare finances, benefits, support groups, and volunteer services.
• When your parent may need to move in to an assisted living facility or a nursing home.
• When you are helping your parent relocate from one state to another.

Your Active Problem List

The best thing you can do is to try to come up with a problem list and then solve problems, rather than being overwhelmed by all of the various pieces in the eldercare universe. There really aren't as many issues as it seems once you can get your hands around your own situation. What we think is complex and unfamiliar is because we haven't been there before. So for example, if your mother is becoming frail, and the question is, can she continue to drive or can she continue to take care of the home herself, then both the medical information and the non-medical information that you need is finite.

The best way we've been able to help adult children with family caregiving as well as seniors who are taking care of a spouse is to look first at the physical problems, then at the practical problems, and then at the emotional stress that goes along with it. If you can take care of the aging parent's physical problems by understanding their doctors, and then the practical problems of safety at home and coordinating care - of linking services - then the emotional stress, the fear, the confusion, the sense of being overwhelmed lessens.

Coordinating your parent's care competently will be the foundation of gaining control over his or her well-being as well as your own time and energy. A well-trained professional care manager will be familiar with the complex but often predictable obstacles faced in the difficult stages of serious chronic illness - bringing together all the tasks needed for your parent's comfort, such as grocery shopping, lawyer appointments, medical scheduling, and more.

Here are some things to consider if you take on the care-managing role.

Believe in your own observations and expertise. As you become involved with coordinating your parent's needs, you and your parent can learn the details of both the medical and non-medical care involved. You will know every test that has been done, and every treatment being undergone. Even if another relative or friend takes on part of the job - taking your parent to her doctor's visits, cooking the family meals - you will know which person is doing which job at what time, and will get reports on any activities with which you are not directly involved. Once you have a plan, the family unit is uniquely suited to coordinating your parent's care - provided that you all share information.

Stay organized. Someone in the family should keep a record of all the services, tests, procedures, examinations, medications, and questions that need to be answered in order to coordinate care effectively. That person should keep an appointment book with enough space to write down essential information, such as:

• The names and contact information of each of your parent's doctors and other service providers and a list of the problems each provider is addressing.
• Any tests, treatments, and procedures along with their dates.
• A medication list.
• Notes of past appointments with other providers specifically focused on the recommendations of each of these providers about treatments and follow-up.
• A schedule with future appointments and the reasons for them.

Armed with this information, you should be able to tell each provider about all the medical care your parent is receiving from other physicians. Supply all the details - for example, that your mother saw her heart doctor last week and the doctor increased her medication because she was having breathing problems. It's especially important to update all providers on any conditions that they may not be aware of - and it's all information already in your notes.

If you're a long-distance family caregiver or if you are unable to accompany your parents to their medical appointments, communicate with the physician's office as best you can. If it's possible, have a friend or relative who lives closer to your parent go along on doctor visits.

Keep everyone talking. In addition to your notes, make sure that copies of medical records, as well as any tests, treatments, or services, are forwarded to other providers who can benefit from the information you are coordinating. Keep all the providers informed about each other and be sure to ask each provider how you can best help keep medical tests and reports current. If you can identify a contact person at each provider's office you will be able to follow up to make sure that everyone has all the important information.

In addition to sending and receiving information, getting to know the office staff in the doctors' offices can help you with planning and scheduling appointments. Often doctors' assistants keep cancellation lists to get patients in to see the doctor as soon as possible. If you take the time to talk with them, they may think of you first when the needs arise.

With good and well-coordinated information, caregivers and patients are better adapted and more in control of meeting the daily needs of living with an illness. The time spent finding the information, or the money spent hiring a care manager to help you, will save time later in the process - time that can be used to nurture both your parent and yourself and to enrich your relationship by creating room to express the intimacy between you.

That's the one thing no one else can do.

In our next blog, we'll talk about "guidance support," which is a specific approach to problem solving that helps you learn how to solve problems yourself.

For more information, visit www.caresupportofamerica.com.

Eight Steps for Family Caregiving, Part 3

Dan Tobin, M.D. — Wed, 14 Oct 2009 16:42:30 +0000

Home Care, Eldercare Finances, Housing, and Insurance: Gathering Non-Medical Information

When we started our steps for family caregiving, we advised you to create and continually update a problem list of all the issues your family is facing. First, it's a tool for working with your parent's doctors. Your problem list is also a guide for gathering and evaluating the non-medical information you will need to help your parents stay independent, or deal with such issues as home care, insurance, and healthcare finances.

Step 3: Gathering and Evaluating Non-Medical Information

As elderly parents develop serious chronic illness, the specific things you need to coordinate to keep them safe at home can become many and complex. There are the basic activities of daily living (you may hear them referred to as ADLs) that were previously routine and can become difficult - eating, bathing, walking, dressing, using the bathroom. Instrumental activities of daily living (IDLs) - housework, meal preparation, administering medications, shopping, getting to and from appointments, using the phone, and managing finances - can also become harder over time, and relate directly to your parent's ability to remain independent.

Housing Options

Your parents will want to remain independent for as long as possible. As those instrumental activities of daily living become more difficult, your first goal will be to find credible in-home aide service to help parents remain safe in their own home. It is important to find credible people to be in your parent's home. Try not to buy too much or too little time, if possible. Even trusted agencies and individuals need be monitored. This is a time to be vigilant as elder abuse of all sorts occurs daily throughout the country.

As frailty advances, many seniors begin to think about moving to senior housing where various degrees of assistance are provided, depending on your parent's degree of mobility.

• Independent living - for seniors who live alone and can perform all ADLs.
• Assisted living - facilities that provide assistance and monitoring, and care for a parent who can no longer live alone but does not need 24-hour nursing care.
• Nursing home - a skilled nursing facility for a parent who can no longer perform many of the activities of daily living and needs extensive assistance, and also rehabilitative services in the case of accidents and reversible illness.

How to Pay for Care

In addition to the stress and emotional issues you may face as a caregiver, you will probably have to deal with a number of financial issues. Caregivers often miss work and lose income while looking after their parents. Depending on all the family dynamics it is helpful for the immediate family to make a financial plan for ill parents' needs. If you can afford a family care manager, you may be able to reduce the number of long-distance trips that you need to make and thus, get the most out of your healthcare dollar.

First and foremost, you need to gather information on how to pay for care.

Medicare. Medicare is a government-funded social insurance program that supplies the elderly with health insurance. Medicare is offered to all U.S. citizens and longtime legal residents who are 65 or older. In certain situations, younger people may also qualify for Medicare. Medicare pays for 80% of covered medical and hospital services, and people who buy the program's Medicare Supplemental Insurance have the other 20% paid for.

Medicaid. This is the U.S. health program for people and families with low incomes and few resources. It is jointly funded by the federal government and by individual states administering their own programs. Policies will vary from state to state, so if you are considering applying for Medicaid for your parent, be sure to find out what your state does and does not offer. Many elders qualify for both Medicare and Medicaid.

Long-Term Care Insurance. Private long-term care insurance helps pay for certain services to assist people who are too sick to perform ADLs like dressing, taking showers, or walking. The insurance also covers services within assisted-living facilities, adult day care, and nursing homes. These services are generally not covered by regular health insurance, Medicare, or Medicaid.

Managed Care. Managed care provided by Medicare has limits on the services they provide. Some take the form of Medicare HMOs (health maintenance organizations). Managed-care organizations often employ care managers to help control usage and costs.

A good family care manager - that is, one you hire yourself to work directly for you - can help you and your parents decide what their particular needs are, and understand options and how to pay for them - whether through Medicaid, private long-term care insurance, or services that you would pay for yourself. The care manager can help you find good sources of in-home care. Be careful to work with care managers who are not selling other services and/or getting a commission for steering you to other services.

Predictable Needs

There are predictable needs of seniors and their family caregivers, and understanding and gathering non-medical information can help prevent a great deal of uncertainty and stress. For example, your parent's driving may be restricted at some point and you will need to investigate alternate transportation resources.

Some independent experiments in aging are building independent housing that allow each person or couple to own their own home, but share a community plan for leisure activities as well as for medical and in-home care as aging and frailty advance. We can also expect an increasing number of services and monitoring options to allow seniors to "age in place," that is, age in their own homes, remaining safe and independent for a longer period of time.

In our earlier blog on medical information, we gave guidelines for evaluating information from the Web, which also apply to non-medical eldercare information.

Other Information Resources

Other good sources of information are public libraries. Many public libraries have librarians who have received training in a new specialty called "Consumer Health Information Services." Some librarians will review Websites and books and even prepare information packages for patrons. We learned at Care Support of America of librarians who have provided such help as:

• Providing information resources for preventing falls in the bathroom.
• Arranging for the Office for the Aging to provide counseling assistance for seniors trying to understand Medicare Part D benefits.

The National Association of Area Agencies on Aging (n4a) provides free telephone referrals for specific community-based services to help elders at home with transportation, Meals On Wheels, and crisis counseling.

Remember, gathering and understanding information will put you in a better position to cope with issues as they arise.

Five Tips for Information Support

In sum:

1. Keep updating and refining your Problem List with useful and necessary information. Include information on non-medical issues such as home care, insurance, and healthcare finances. This will help you solve the non-medical problems that you can, and better adjust to changes as they unfold.

2. Look for referrals from trusted individuals or organizations when planning to get home care aides in your parent's home. Understand the difference between certified home care, private duty nursing, private duty homecare, personal or companion aides, and hospice homecare.

3. Try not to become overwhelmed or confused by all the information that is available. Learn to be critical about what you read on the Internet, see on television or hear from friends. Review information with a trusted health professional whenever possible.

4. Be sure to monitor your parents' driving abilities and look for information on alternative transportation when necessary.

5. For helpful information about available services, connect with the local Agency on Aging and other support groups, plus well-known disease-specific associations such as the Alzheimer's Association, the American Heart Association, the American Cancer Society, the National Parkinson Foundation, and the National Kidney Foundation.

Our next blog will discuss care coordination - learning how to cope with the difficult and myriad types of situations that come up, and how to link services and information from different sources to navigate your individual situation.

For more information, visit Care Support of America.

Medicare's Missing Link: Care Coordination and Family Caregiving

Dan Tobin, M.D. — Thu, 10 Sep 2009 22:52:32 +0000

As healthcare reform is being debated in Congress and on Main Street, vital and practical issues in eldercare and family caregiving are being overlooked. Some 30 million U.S. baby boomers are family caregivers for their aging parents, trying to keep their parents safe at home and helping them navigate the complexities of Medicare and manage an advancing illness. If they had their say, most elderly people would prefer to age in their own homes. Regardless of how the overall healthcare debate unfolds, some incremental and cost sensitive changes in Medicare that support care coordination, family caregiving, and aging at home could help older Americans and family caregivers, while reducing hospitalizations and institutional care.

The Dartmouth Atlas of Healthcare, which for more than 20 years has tracked services provided to the Medicare population, has consistently found a lack of uniform utilizations of hospitals in serious illness. Instead, it found that in regions where people get more care, they do not necessarily get better care -- or better outcomes.

Medicare's "fee for service" structure focuses on acute care and "well" visits and neglects serious chronic illness care coordination, which often falls on overwhelmed family members. This has been well documented in studies by such organizations as The Partnership for Solutions, the National Family Caregivers Association, the Family Caregiver Alliance, and the National Alliance for Caregiving.

It turns out that care coordination makes a difference. Major studies have found that if physicians initiate care coordination, families are better able to plan for "aging in place," with far fewer hospitalizations and nursing home stays. A comprehensive 2007 review for the Agency for Healthcare Research and Quality by McDonald, Sundaram, Bravata, et al., along with other studies of older patients with complicated health issues, indicate that when patients and family caregivers understand their doctors' recommendations, coordinate medical and non-medical home care, and plan for the progression of illness, there can be significant reductions in hospitalizations and institutional transfer, as well as improved quality of life.

Cost-sensitive regulatory and legislative changes could vastly improve the quality of life for seniors and their loved ones. In one currently evolving model, "the medical home," the patient's primary care physician would focus on coordinating care, provide ongoing health education and counseling, while also linking to community services that support family caregivers coordinating aging at home for their loved ones. This model is being developed by organizations such as the American Academy of Family Physicians, the American College of Physicians, and the American Osteopathic Association.

In another complementary approach, Care Support of America has a family care manager service that is paid for by adult children and proven in independent peer-review studies to improve the quality of life for family caregivers and reduce hospitalizations. While some parts of dealing with serious illness are undeniably difficult, other problems can be minimized or prevented with information, planning, and support -- and make a tremendous difference in people's lives.

For example, our group devised a simple five-question form to guide patient-physician communication and help alleviate patients' uncertainty around diagnosis, treatment, and prognosis. This brief form greatly helped patients and their caregivers better understand the treatment they were receiving, communicate more effectively with their doctors, and more easily plan for future needs -- all from one brief form containing a few key questions.

There is an agreed-upon need for physician-initiated care coordination that helps families plan for aging in place and avoids hospitalizations and transfers to nursing homes. Inevitably, our parents will become frail, and our cultural fear of death should not prevent us from looking at proactive ways to help them plan their own care so that they can be as independent as possible for as long as possible -- and safe, always.

Evidence-based methods of care coordination and health counseling for family caregiving and aging in place already exist, and the American Medicare model could take a distinctly humanistic as well as fiscally prudent approach to supporting adult children and their parents as they age.

It is time for Medicare to integrate what we already know about accountable quality outcomes and non-directive, shared decision-making, and become more than just a national payer of senior healthcare services. Common sense Medicare changes should integrate evidence-based efforts into the baseline services that are being discussed. Just look at the numbers -- some 80 million members of Gen X and Gen Y will become family caregivers in the years ahead.

Eight Steps for Family Caregiving, Part 2

Dan Tobin, M.D. — Wed, 26 Aug 2009 15:52:48 +0000

Caring for an aging parent, particularly when a chronic illness is involved, can be enormously stressful. Although attending to your mother's or father's medical needs is in the hands of their physician, you still need to know what questions to ask. You will want to understand treatment options and how your parent's condition might progress -- so you need to become "health literate."

Step 2: Becoming Health Literate

To have an effective partnership with your doctor, you have to accept that medicine isn't your field of expertise, but that you need to become better educated about it. Once you can apply what you know to the questions you ask and the answers you receive, you can begin to apply what you learn to your parent's caregiving. Psychologically, this can help alleviate any feelings of inadequacy you might have about the task at hand.

Here are some ways health literacy can help you:

--You will be able to help your parents understand more about the ramifications of their condition. Many of our parents were raised in an era in which it was assumed that the doctor was always right, and so they are likely to accept even what they don't really understand.

--You might be in a situation where you are dealing with more than one doctor, for a second opinion perhaps, or trying to choose a doctor you can relate to.

--You may need to distinguish between what is available at different types of practices and different types of hospitals -- between smaller community hospitals, say, and large academic hospitals where you will see not just your attending physician but also medical students, residents, and interns. You will want to be clear about who is responsible for the case and who is taking care of your parent.

All of these issues fall under the theme of health literacy. The purpose of this blog is to help you make sense of the enormous amount of health and medical information that is available on the Internet and elsewhere, some useful and some not.

Care Support of America studies have shown that doctors will spend more time with an activated patient or caregiver, and that the knowledgeable patient and caregiver will feel that they are getting more and better information than they have previously received.

Some obstacles to understanding the doctor

There are more reasons than you might imagine for not understanding what a doctor says:

--You might not know a specific term or word. For example, if you don't know that a "fibroadenoma" is a benign breast lump, you won't understand that it's not cancer.

--You might not understand the context of medical words -- how severe an illness may be, how advanced it is, or which form your parent may have.

--Cultural differences may be a factor. The doctor or your parents may be from a culture where patients and family members are not expected to understand the complexities of medical care.

--It may be a generational issue. Baby boomers are more consumer-oriented than their parents. In any "doctor knows best" situation, it will take more work from you to get the information you need to make informed decisions.

--Don't overlook such issues as hearing and eyesight. Functional impairments can make it more difficult for a patient to read, write, hear, and speak.

--If a cognitive impairment is involved, that means it's more difficult for the patient to think, and possibly grasp even simple concepts.

--Emotional concerns such as anxiety, fear, denial, embarrassment and the like can make it difficult to focus on the information you're being given.

If you expect a particularly confusing or emotionally charged meeting between the doctor and your parent, it can be especially useful for you, another family member, or a friend to go along. That way you or the companion, your parent, and the doctor can compare notes to make sure that everyone is on the same page about what was said and what needs to be done.

Dealing with medical information overload

Before widespread use of the Internet, accessing health information took more time and effort than it does now. The Web has changed all that. There is now much information available -- sometimes too much.

With thousands of facts available at the push of a button, how can you determine which information is correct and which information is relevant to your situation?

The problems with both overabundant and inaccurate health information can be addressed by having some guidelines when you start your search. Be selective. Here are some guidelines for deciding whether a book, magazine, or Website is a good source of health information:

• The author or source of the content is established, respected, and dependable.
• The information is up to date and in keeping with current scientific findings and professional practice.
• The book or article is does not focus only on selling a product and does not purport to have a turnkey solution to everything.
• The book or article is based on credible scientific research, identifies the source of its information, and provides references for the reader to access more information.
• The Website does not charge a fee for information or membership.
• The information provided is appropriate to the audience level and easy to use.
• The content is professional in appearance and tone.
• The content is not limited to one geographical location
• The Website has links to other sites.

National disease-specific organizations such as the American Heart Association, the American Lung Association, and the American Cancer Society are often good sources of quality information. It's their mission to provide information and education to family caregivers and patients. So what you get is usually up-to-date, reliable, and applicable to the illness in question.

The pluses and minuses of doing your own research

There are advantages and disadvantages to gathering health information by yourself. The positive side is that caregivers and patients are actively trying to gain control over dealing with advancing illness, and actively learning about chronic illness results in fewer misconceptions. That can reduce anxiety caused by lack of knowledge.

The negative side is that if the family caregiver and patient become obsessed with information, especially from the Web, their stress level can skyrocket. Your parent can become convinced that his or her disease is drastically spreading, based on ominous material on the Web or in the papers. And you as a caregiver can experience this kind of stress secondhand. This phenomenon hasn't been studied, but it appears similar to what has been seen in medical students.

Normally, medical students showed themselves quite capable of interpreting information critically and intelligently. Then they began their initial coursework in different categories of illness. Suddenly, many of them began to see parts of themselves and symptoms in the descriptions of illness they were studying (Hodges, 2004). This study shows that health-related information that is not confirmed or discussed with a professional can create unnecessary worry.

If you're a caregiver with this tendency, be aware of it and guard against it. Push yourself into taking information with a degree of detachment and a focused eye for context.

You should always check the information you gather with your parent's doctors before using it as a basis for any decisions. If you are prone to rushing to judgment about health-related matters, you might time your reading and questions to coincide closely with your parent's next doctor's appointment, when the doctor or office staff can quickly put the information into context for you.

Alternatively, you might ask the doctor to give you an individualized preface to any patient-education material that you plan to read, helping you rule out in advance anything that does not apply to your family's situation.

At the very least, keep reminding yourself that worst-case scenarios don't always occur, and think instead about possible better outcomes.

Medical information isn't the only type of information you will need. After all, you are in a complicated situation in unfamiliar territory, with multiple issues and many questions. In the next and future blogs, we'll talk about finding information to help you deal with your parent's other needs -- tangible services and beyond that, legal, financial, emotional, and spiritual support.

Checklist: 5 Tips for Health Literacy

For more information, visit http://www.caresupportofamerica.com.

Fully Understanding the Medical Needs of Your Parent

Dan Tobin, M.D. — Wed, 26 Aug 2009 15:38:38 +0000

1. Don't let embarrassment or fear hold you back from getting the information you need to be fully informed about your parent's health. Be respectful of the physician's time, but ask questions and expect answers.

2. Ask the doctor or one of the doctor's staff for written information regarding any aspect of your parent's condition or treatment you don't understand. You can also ask them to direct you to a reputable website or printed information.

3. Before the doctor visit, make a written "problem list" of any questions or concerns you want to discuss. Bring the list along and be prepared to jot down notes.

4. Accompany your parent to the doctor whenever possible, and especially when decisions must be made or important information communicated. It will help you and your parent become better informed and make better decisions.

5. If your parent has hearing, sight, or cognitive impairments, remind the healthcare provider so they can meet your parent's needs for clear communication.

Source: Care Support of America

For more information on becoming health literate, see Eight Steps for Family Caregiving, Part 2

Eight Steps for Family Caregiving, Part 1

Dan Tobin, M.D. — Thu, 30 Jul 2009 17:34:48 +0000

It's the most natural thing in the world to struggle as a caregiver with a sense of chaos in dealing with an elderly parent's medical emergency or serious chronic illness. Here is where a positive and proactive approach can really help adult children caring for aging parents. Our care-manager method, which focuses on eight basic activities -- or steps -- that we will outline in this blog, has helped many families navigate the complex terrain of family caregiving and find practical solutions, as well as moments of joy, in caring for aging parents.

We are going to write about each of these activities in greater detail, and here is a preview:

Tobin 8 Steps for Family Caregiving

1. Understanding doctor's recommendations and asking productive questions.

2. Becoming health literate regarding medical terms and health information.

3. Getting information on non-medical topics (home care, insurance, healthcare finances).

4. Linking medical and non-medical needs and creating an active problem list.

5. Obtaining guidance for solving specific family caregiving problems.

6. Dealing with emotions for both parent and caregiver.

7. Finding and hiring tangible support and services for your parents.

8. Extended planning for your parents foreseeable and long-range future.

Source: Care Support of America

Our method has been developed over decades of working with patients, their families, and healthcare providers -- and proven in five major studies. Understanding these steps can help you face worries, concerns, and fears, come up with a plan, and be successful in getting family members to work together in keeping your parents in a safe, comfortable, and dignified environment. The unfamiliar medical and non medical environment of family caregiving can be managed when you decide to gain as much control as possible within your family situation.

We'll deal with each step in greater detail in this and future blogs, and also provide a checklist for quick reference.

Step 1: Working with Your Parent's Doctors

Keeping the Doctors Coordinated

Your parent may be seeing more than one doctor, and it's important to know who your parent's primary treating physician is. Sometimes this is a doctor who has not known your parent for a very long time. Primary-care doctors' offices are usually very busy, and most do not have the time, staff, or technology in what can be called a "medical home" to help coordinate your parent's chronic illness or to help you fully understand all the treatment options. A professional care manager can help, but the doctor's office is where you must start if you intend to figure out the details and come up with a plan to manage the illness and care between visits. Of course, your parent has to give permission to their doctor to talk with you and release any confidential medical information.

So, start by asking the primary-care doctor some simple but crucial questions:

--What is my parent's condition?

In coordinating your parent's chronic illness needs, you need accurate information and direction from your parent's primary-care doctor. You'll need to understand your parent's diagnosis (or diagnoses -- many elderly people have more than one condition). This is the first step in understanding the specifics of your own situation as well as that of your parent.

Psychologically, simply knowing what these conditions are, and the relative severity of each, will help keep you feeling more grounded and less powerless.

--What is the prognosis?

Once you have the diagnosis, you'll want to get the prognosis -- the doctor's prediction of the illness's probable progress over a period of time. Your doctor may or may not volunteer the prognosis -- don't hesitate to ask. Obviously, the prognosis will depend on the disease, and it may change over time. This is a difficult one to face, since at some point we have to face the inevitability of serious illness and dying. But it is far better to know the facts, so that you and your parent can be prepared.

--What is the treatment plan?

Your next questions for the doctor involve the treatment plan -- will it involve surgery, radiation, chemotherapy? Are there any routine outpatient procedures? What medications will your parent need and how often? What are the side effects? What can be done to make your parent the most comfortable possible, for the longest length of time?

Involving the Family

In order to get the best information about diagnoses, prognoses, and treatment plans, you'll want to establish the roles of various family members in communicating with your parent's doctors, the doctors' staffs, and all the treatment providers. In most families, one person is the primary caregiver -- often it's the spouse of the sick parent, and just as often it is one of the adult children.

It's important for your family members to all discuss who will have the primary caregiver role, and what roles the other family members (or close friends) will have. There are plenty of things to do:

--Who will be the person to contact other family members about the evolving situation?

--Who can commit one day a week to caregiving in the home so that the main caregiver can get some rest?

--If the primary caregiver is unable to communicate with the doctor's staff and distribute information to the rest of the family, who in the family can take on this role?

The purpose of all this is to create an "activated family unit," partnering with your parent's doctors and the doctors' staffs. The family can then depend on the designated family caregiver to get the information from the doctors and relay it to everyone else. With one family member as the point person, you will develop a stronger working relationship with the doctor's office.

The primary caregiver will also need to coordinate the information from multiple doctors' offices, integrate test results and treatment plans into the patient's and family's daily activities, and plan home-based care. It's a partnership that will make the most of everyone's limited resources.

In the Doctor's Office

A doctor's office can be intimidating and you may not have the time to ask all the questions that are important to you. So you need to start with a determination not to be intimidated. You and your family should develop a simple written list of questions, and make an appointment with the doctor's office to discuss them. It doesn't need to be a long appointment, but it is important.

Sometimes, doctors will refer you to handouts of literature, and it's helpful to have read those materials before your conversation. Then you won't be sidetracked and can still ask your pressing questions that the literature didn't answer.

Here are some questions you might ask, as well as some ideas on how to be proactive and clear with the doctors. You should also include questions other family members might have:

--Can you cure the disease or is it going to get worse?

--Is the illness acute or chronic?

--What will it feel like if it gets worse and how can you help my parent be comfortable if it does?

--Can you speak a little more slowly so I can be sure I have it right?

--Can you put that in lay terms so that I can be sure I understand what you are saying about my mother's care?

--Do you have a picture that will help me get the idea?

--If I draw a picture of it, I will remember it better and can explain it better to other family members. Can you help me do this?

--I thought I heard three different points in what you said. Can we go over each of them briefly one more time?

--Can I repeat to you what I heard so I can confirm that I have it right?

--Sorry, but I don't understand clearly what you are saying even though I know you explained it well. Can we go over it one more time?

Be sure to take notes on everything the doctor tells you. This won't be your last list of questions, but it's a start. As an illness progresses, being prepared and knowing how to work with doctors' offices, hospitals, and health-related services will help you anticipate obstacles and critical issues ahead.

In the next blog, we'll talk about how to wade through the vast amounts of medical information that are now available (some useful, some not) to fully understand the needs of your ill parent and become health literate.

For more information, go to http://www.caresupportofamerica.com.

Checklist: 5 Tips for Working with Your Parent's Doctors

5 Tips for Working with Your Parent's Doctors

Dan Tobin, M.D. — Thu, 30 Jul 2009 17:34:11 +0000

1. Make Lists. Write down your questions: What are your parent's diagnoses? What are the predictable problems that come along with these diagnoses? What are the goals of treatment, and what treatment choices are there? List all your parent's medications, vitamins, and supplements. Note any new symptoms or changes in their health. Many people find that keeping all their notes and records in one binder or notebook is a great organizing tool.

2. Build a working relationship with the doctors' office. Remember that the best person to talk to is not necessarily the doctor-it could be a nurse or office manager. Remember, too, that doctors' staffs are usually very busy; be as direct and brief as possible with your questions. You can always call the office to follow up after each communication.

3. Create a problem list for all the issues your family is facing. Continue to focus on the best way to address and solve each problem with as much guidance as possible from the doctor's office. You can use the 8-Step method to solve each problem.

4. Request written instructions or educational materials. Ask the doctor or the office nurse for materials to help you understand your parent's physical problems, any testing that might be needed and any treatments recommended.

5. Focus on practical homecare issues. The doctor's office can offer specific suggestions for keeping your parent safe at home, but you will need to follow through. Getting professional guidance on homecare safety can be a tremendous help. You can find such resources by searching the Internet using terms like "family care support."

Source: Care Support of America

Coordinating Your Aging Parents' Needs

Dan Tobin, M.D. — Mon, 06 Jul 2009 22:00:08 +0000

As our parents age, we naturally become concerned about their health and safety, especially when called to action within complex, unfamiliar medical as well as non-medical situations. Our parents get sick, or fall, or become increasingly frail and have difficulty getting around or living at home. Often with a mixed sense of responsibility, guilt - and honor (that has not yet been studied) - millions of Baby Boomer, adult children are "sandwiched" between taking care of their aging parents and their own children.

Over the last 20 years I have been working with seniors and their families to find practical, proactive, and positive ways to face the challenges of aging and advancing illness. As a practicing physician, then as a researcher developing models of care coordination and health counseling for patients and their families facing advanced illness, I remained determined to make available to the public the helpful tools and methods for family caregiving that we discovered.

I am excited to share the specifics our group has figured out that can help you find individualized solutions for the stress of family caregiving. We remain committed to the mission of helping you help yourself and your loved ones navigate the lifestyle, healthcare, and economic issues of caring for aging parents.

This blog will introduce a straightforward approach to getting a handle on your family's situation. In the next blog I will summarize our specific eight-step method for family caregiving and, later, go more deeply into each of the steps. Since neither our parents' insurance, Medicare, nor our own healthcare coverage supports family caregiving services, our group, Care Support of America, has created a company dedicated to helping. I am committed to getting you as much information and as many tools as possible.

Let me share a recent story with you that will introduce a way to start figuring out individualized solutions when coping with the ongoing stress of family caregiving.

Meg is a 53-year-old married mother of two teenage boys, working full time as a manager in a retail clothing store in Philadelphia, Pa. She lives four hours from her 85-year-old widowed mother who has heart disease and advancing memory loss due to Alzheimer's. Meg's three brothers live in different parts of the country, and none of them had any experience with Alzheimer's. After Meg's mother started a kitchen fire by leaving soup on the burner, the children knew she was not safe being at home alone. After three months of driving to visit almost every weekend, Meg hired a care manager for four hours to help her figure out how to solve the dilemma that she and her three brothers could not.

Meg quickly learned from the care manager how to ask her mother's doctor about treatment options, as well as more details about Alzheimer's and how it would progress for her mother. When they realized that even four hours a day of home health aides would not keep their Mom safe, everyone in the family agreed that moving their mother to an assisted living facility was best. Not only was Meg's life improved, but her mother was safe. This guidance helped the siblings understand their fears about their mother's disease and how Alzheimer's support groups can help. Once the unfamiliar terrain was outlined, the four children quickly got control over a difficult situation.

When you're facing eldercare and family caregiving problems and the stress that can accompany them, focusing on these three major areas will help:

1. Be positive and proactive - once you take responsibility for getting some control, you will.

You will be challenged on many levels when trying to get control of family caregiving problems - medical, logistical, legal, financial, and emotional. It is not unusual to feel confused, exhausted, and not in control. We are all different and face problems in different ways, but this is the time to take control of your own emotional reaction and decide to take a positive and proactive approach. By taking a committed step to do something in order to get a handle on your situation, good things can happen.

2. Get a plan.

You will need to gather information, create a problem list, and then a road map for solving your problems. We have found that most people need help with the medical and non-medical aspects of home care, hospital and institutional care, and basic financial issues. Asking a professional for help may be of value. We have found that every family's situation is different - you will need to find the individualized solutions that will work for you.

3. Face worries, concerns, and fears.

There will always be barriers to solving problems and adapting to loss as well as change in your parents advancing illness. Pay attention to your willingness to change and your family's way of coping with difficult situations. Unless you are an only child, you will be sharing decisions with your family members - try to get everyone on the same page and support the family caregivers who are carrying the load. And remember that the more you take care of yourself, the stronger you will be as a family caregiver.

Our research and work over 20 years - with elderly patients and their families, and all of the healthcare professionals they encounter - shows that if you approach family caregiving issues in a systematic way, you can gather the information you need to lay the foundation to deal with whatever comes next. This philosophy and method of coordinating care has been proven to work throughout the country. Obviously, some illnesses and conditions are terribly difficult and there is no way around that. But other problems can be avoided - or minimized - if you know what to expect, or can find the right kind of guidance.

You really can eliminate the frenzy and improve the quality of life for your parent and you, the caregiver.

The bottom line is that your parents will always want to be independent and not be a burden on you - but they need your help. The goal of this blog is to help you and your family to adjust well and learn how to spend quality time with your parents as they age.

Along the way, you will create positive memories that last forever.