Get daughter to shop for mePEOPLE WITH CHRONIC ILLNESSES often worry about what will happen to them if their disease becomes truly disabling. They fear that at some time in the future they may have problems managing their lives and their illness. One way people can deal with fears of the future is to take control and plan for it. They may never need to put their plans into effect, but there is reassurance in knowing that they will be in control if the events they fear come to pass. We’ll examine the most common concerns and offer some suggestions that may be useful.
Regardless of our state of health, most of us fear becoming helpless and dependent. But this fear is even greater among people with potentially disabling health problems. And it usually has physical as well as financial, social, and emotional components.
As your health condition changes, you may need to consider changing your living situation. This may involve hiring someone to help you in your home or moving to a place where more help is provided. How you make this decision depends on your needs and how they can best be met. Keep in mind that we are talking about physical, social, and emotional needs. All must be considered.
Start by evaluating what you can do for yourself and what activities of daily living (ADLs) will require some kind of help. ADLs are the everyday things such as getting out of bed, bathing, dressing, preparing and eating meals, cleaning house, shopping, and paying bills. Most people can do all of these things, even though they may have to do them slowly, with some modification, or with some help from gadgets.
Some people, though, may eventually find one or more of these tasks no longer possible without help from somebody else. For example, you may still be able to fix meals but no longer able to do the shopping. Or if you have problems with fainting or sudden bouts of unconsciousness, you might need to have somebody around at all times. You may also find that some things that you enjoyed in the past, such as gardening, are no longer pleasurable. Using the problem-solving steps discussed in Chapter 2, analyze and make a list of what the potential problems might be. Once you have this list, solve the problems one at a time, first writing down every possible solution you can think of. For example:
Get daughter to shop for me
Find a volunteer shopping service
Shop at a store that delivers
Ask a neighbor to shop for me
Use the Internet
Get home-delivered meals
Hire an around-the-clock attendant
Move in with a relative
Get a Lifeline Emergency Response system
Move to a board-and-care home
Move to a retirement community
When you have listed your problems and the possible solutions to the problems, select the solution that seems the most workable, acceptable, and within your financial means (step 3 of problem solving).
The selection will depend on your finances, the family or other resources you can call on, and how well the potential solutions will solve your problem. Sometimes one solution will be the answer for several problems. For instance, if you can’t shop and can’t be alone, and household chores are reaching the point of a need for help, you might consider a retirement community that will solve all of these problems, one that offers meals, regular house cleaning, and transportation for errands and medical appointments.
Even if you are not of retirement age, many facilities accept younger people, depending on the facility’s particular policies. Some facilities for the retired take residents at age 50, or younger if one member of the household is the minimum age. If you are a young person, the local center for people with disabilities or “independent living center” should be able to direct you to an out-of-home care facility appropriate for you. When looking for a retirement community, consider the levels of care that are offered. These usually include independent living, where you have your own apartment or small house; assisted living, where you get some help with dressing, taking medications, and other tasks; and skilled nursing, which includes help with all ADLs and some medical care.
It may help to discuss your wishes, abilities, and limitations with a trusted friend, relative, or social worker. Sometimes another person can spot things we ourselves overlook or would like to ignore. A good self-manager often makes use of other resources, which is step 6 in the problem-solving steps in Chapter 2.
Make changes in your life slowly, one step at a time. You don’t need to change your whole life to solve one problem. Remember that you can always change your mind. Don’t burn your bridges behind you. If you think that moving out of your own place to another living arrangement (relatives, care home, or elsewhere) is the thing to do, don’t give up your present home until you are settled in your new home and are sure you want to stay there.
If you think you need help, hiring help at home is less drastic than moving. If you can’t be alone and you live with a family member who is away from home during the day, going to an adult or senior day care center may be enough to keep you safe and comfortable while your family is away. In fact, adult day care centers are ideal places to find new friends and activities geared to your abilities.
A social worker at your local senior center, center for people with disabilities, or hospital social services department can be very helpful in providing information about resources in your community. This person can also give you ideas about how to deal with your care needs. There are several kinds of professionals who can be of great help. As previously mentioned, social workers are good for helping you decide how to solve financial and living arrangement problems and locating appropriate community resources. Some social workers are also trained in counseling the disabled or the elderly in relation to emotional and relationship problems that may be associated with your health problem.
An occupational therapist can assess your daily living needs and suggest assistive devices or rearrangements in and around your home to make life easier. They can also help you figure out how to keep doing pleasurable activities that are limited because of disability.
Most hospitals have a discharge planner on staff. This person, usually a nurse, will see you before you go home and check that you know how to care for yourself and also that you have the help you need. It is very important that you be honest with this person. If you have concerns about your ability to care for yourself, say so. Solutions are almost always available, and the discharge planner is a real expert. However, the planner can help only if you share your concerns.
An attorney specializing in elder law should be on your list for helping you set your financial affairs in order—to preserve your assets, to prepare a proper will, and perhaps to execute a durable power of attorney for both health care and financial management. If finances are a concern, ask your local senior center for the names of attorneys who offer free or low-cost services to seniors. Your local bar association chapter can also refer you to a list of attorneys who are competent in this area. These attorneys are generally familiar with the laws applying to younger persons with disabilities as well. Even if you are not a senior, your legal needs are much the same as those of the older person.
If you find that you cannot manage alone, the first option is usually to hire somebody to help. Most people just need a person called a home aide or something similar. These are people who provide no medically related services that require special licensing but do help with bathing, dressing, meal preparation, and household chores.
There are a number of ways to find somebody. The easiest, but most expensive, is to hire someone through one of the home care agencies, usually listed under “home care” or “home nursing” in the Yellow Pages. These are usually (but not always) private, for-profit businesses that supply caregiver staff to individuals at home. The fees charged vary with the skill and license of the caregiver and will include an amount for Social Security, insurance, bonding, and profit for the agency. The fees are usually about double what you would expect to pay for someone you hire directly. The advantage, if you can afford it, is that the agency assumes all payroll responsibilities, including Social Security and federal and state taxes, as well as responsibility for the skill and integrity of the attendant, and can replace an ill or no-show attendant right away. The agency pays the staff directly. The client pays the agency and has no involvement with paying the attendant.
Registered nurses (RNs) hired this way are very expensive, but it is rare that home care for a chronically ill person requires a registered nurse. Licensed vocational nurses (LVNs) cost somewhat less but are still expensive and are usually not needed unless nursing services (such as dressing changes, injections, or ventilator management) are required. Certified nursing assistants (CNAs) have some basic training in nursing, are much less expensive, and can provide satisfactory care for all but the most critically ill person at home.
Most of these agencies supply home aides as well as licensed staff. Unless you are bedridden or require some procedure that must be done by someone with a certain category of license, a home aide will most likely be the most appropriate choice for your needs.
The agencies maintain registries or lists of pre-screened attendants or caregivers from which you select the one you wish to hire. The agency will charge a “placement fee,” usually equal to one month’s pay of the person hired. The agency will assume no liability for the skill or honesty of these people, and it will be necessary to check references and to interview carefully, just as you would for someone from any other source. This type of resource can be found in the Yellow Pages under the listing for “home nursing agencies” or “registries.” Some agencies provide both their own staff and registries of staff for you to select from.
Other resources that may provide help at home include senior centers and centers serving the disabled. They often have listings of people who have called them to say they want work as a home attendant or who have posted a notice on a bulletin board there. These job seekers are not screened and need to be interviewed carefully and to have references checked before they start on the job.
Many experienced home care attendants use the local newspaper’s classified “employment wanted” section to find new jobs. They may also advertise online such as on Craigs-list. Home attendant jobs tend to be temporary because one’s patient usually progresses to a need for more or sometimes less care than the attendant provides, so the attendant must then look for a new job. Again, one can find a competent helper through the newspaper or on the Internet, but the advice to interview carefully is valid here too.
Probably the best source of help is word of mouth, a recommendation from someone who has employed a person or knows of a person who has worked for a friend or relative. Putting the word out through your family and social network may lead you to a jewel.
Home sharing may be a solution for the person who has space and could offer a home to someone in exchange for help. This works best if the help needed consists mainly of household and garden chores. Some people may be willing to provide personal care, such as help with dressing, bathing, and meal preparation. Some communities have agencies or government bureaus that help match up home sharers and home seekers.
Note, finally, that every county in the United States has an Area Agency on Aging. You can find yours in the phone book or online. These are excellent agencies to call when you are looking for resources.
As noted earlier, you have several options when considering to move out of your home to find the lifestyle and level of care you need.
The person who needs very little personal care but recognizes the need to live in a more protected setting, with security, emergency response services, and so on, and who is older (usually over 50) may wish to consider a retirement community. These may be owned units, rental units, or so-called life care facilities. The life care facility requires a substantial advance payment (called an endowment, an accommodation fee, or something similar), plus a monthly charge that covers living space, services, and in some cases personal or nursing care when or if the need for that arises. Other such facilities are subsidized by the federal government for low-income applicants. The criteria for what constitutes “low income” are set by the rules governing the federal subsidy that finances the organization.
There are almost always waiting lists for retirement communities, even before they are built and ready for occupancy. If you think such a place would be right for you, you should get on the waiting list right away, or at least a couple of years before you think you want to move. You can always change your mind or decline if you are not ready when a space is offered. To locate a facility in your area, call your senior center or go to the library or the internet, and consult the directory of the Association of Homes for the Aged. Your reference librarian should be able to help you find this publication. YIf you have friends living in nearby retirement communities, ask to be invited for a visit and a meal. In this way you can get an inside view. Some communities have guest accommodations where you can arrange to stay for a night or two before you commit to a lease or contract.
Residential care homes, also known as board-and-care homes, are licensed by the state or county social services agency. They provide nonmedical care and supervision for individuals who cannot live alone. These homes fall into two categories, large and small. The small ones have about six residents, who live in a family-like setting in a neighborhood residence. The large ones have more residents, sometimes hundreds, who live in a boardinghouse or hotel-like setting. They take meals in a central dining room and have individual or shared rooms, with activities conducted in large common rooms.
In either type of facility, the services to the residents are the same: all meals, assistance with bathing and dressing as needed, laundry, housekeeping, transportation to medical appointments, supervision, and assistance with taking medications. The larger facilities usually have professional activities directors. Residents of the larger facilities usually need to be more independent because they will not receive as much personal attention as in the smaller homes.
These homes are licensed in most states for either “elderly” (over 62) or “adult” (under 62). The adult category is further divided into facilities for the mentally ill, the developmentally delayed, and the physically disabled.
It is important when considering a residential care home to evaluate the type of residents already living there to make sure you will fit in. For example, some of these facilities may cater to individuals who are mentally confused. If you are mentally clear, you would not find much companionship there. If everybody is hard of hearing, you might have trouble finding somebody to talk to.
Although all homes are by law required to provide wholesome meals, you should make sure the cuisine is to your liking and can meet your dietary needs. If you need a salt-free or diabetic diet, for instance, be sure the operator is willing to prepare your special diet.
The monthly fees for residential care homes vary, depending on whether they are spartan or luxurious. The most spartan facilities cost about the same as the government Supplemental Security Income (SSI) benefit and will accept SSI beneficiaries, billing the government directly. The more luxurious the home is with respect to furnishings, neighborhood, services, and so on, the greater the cost. However, even the nicest of these will probably cost less than full-time, 24-hour, 7-days-a-week at-home care.
Sometimes called a “nursing home” or “convalescent hospital,” the skilled nursing facility provides the most comprehensive care for severely ill or disabled people. Typically, a person who has had a stroke or a hip or knee replacement will be transferred from the acute care hospital to a skilled nursing facility for a period of rehabilitation before going home. Recent studies have shown that almost half of all people over 65 will spend some time in a nursing home, many of them only for a short time.
No care situation seems to inspire more fear than the prospect of having to go to a nursing home. Horror stories in the news media help foster anxiety about the awful fate that will befall anyone who has the misfortune to have to go there.
Public scrutiny is valuable in helping ensure that standards of care and humane and competent treatment are provided. It must be remembered that nursing homes serve a critical need. When one really needs a nursing home, usually no other care situation will meet this need.
Skilled nursing facilities provide medically related care for people who can no longer function without such care. This means that there may be medications to be administered by injection or intravenously or monitored by professional nursing staff. A nursing home patient is usually very physically limited, needing help getting in and out of bed, eating, bathing, or dealing with bladder or bowel control. Skilled nursing facilities can also manage the care of feeding tubes, respirators, and other high-tech equipment.
For people who are partially or temporarily disabled, the skilled nursing facility also provides physical, occupational, and speech therapy, wound care, and other services.
Not all nursing homes provide all types of care. Some specialize in rehabilitation and therapies, and others specialize in long-term custodial care. Some are able to provide high-tech nursing services, and others do not.
In selecting a nursing home, you should seek out the help of the hospital discharge planner or social worker or a similar professional from a home care agency or center for seniors or the disabled. There are organizations to monitor local nursing homes. Each nursing home is required by law to post in a prominent place the name and phone number of the “ombudsman,” a person assigned by the state licensing agency to assist patients and their families with problems related to their nursing home care. The agencies that can help you with this are listed in the Yellow Pages under “social service organizations.” You may also want to have family or friends visit several facilities and make recommendations.
Next to the fear of physical dependence, many people fear not having enough money to pay for their needs. Being sick often requires expensive care and treatment. If you are too ill or disabled to work, the loss of income, and especially the loss of your health insurance coverage, may present an overwhelming financial problem. You can, however, avoid some of the risks by planning ahead and knowing your resources.
Health insurance and Medicare may meet only a part of the ultimate cost of your care. There are many needs that Medicare does not meet at all, and most private “Medigap” insurance policies cover only the 20% that Medicare does not cover.
However, supplemental insurance policies offer the kind of coverage that provides for care needs that Medicare and Medigap insurance do not pay for. If you plan to buy such insurance for yourself, carefully read the sections on limitations and exclusions. Be sure the policy covers nursing home care at a daily rate that is realistic for your community. Check that it will cover treatments or care for preexisting conditions. Some policies have a waiting period for such preexisting conditions, usually 3 to 6 months. Others won’t cover you at all for any condition that was diagnosed before the start date of the policy. Health care reform has brought many changes in both Medicare and private insurance, some of which may be difficult to understand. We suggest that you talk to people at your local senior center or Area Agency on Aging to find trustworthy sources of information.
If you are too sick to work—either permanently or for some extended period—you may be entitled to draw Social Security on the basis of your disability. If you have dependent children, they would also receive benefits. If you have been disabled for a specified period (as of this writing, it is 2 years), you may be entitled to Medicare coverage for your medical treatment needs. Disability payments are based only on disability, not on need.
If you have minimal savings and little or no income, the federal Medicaid program can pay for medical treatment and long-term skilled or custodial care. The eligibility rules on assets and income differ from state to state. You should consult your local social services department to see if you are entitled to benefits. An elder care attorney may also be able to help.
If Social Security benefits are unavailable or insufficient, the Supplemental Security Income (SSI) program is available to individuals who meet the eligibility criteria for Medicaid.
The social services department in the hospital where you have obtained treatment can advise you about your own situation and the probability of your being eligible for these programs. The local agency serving the disabled usually has advisers who can refer you to programs and resources for which you may be eligible. Senior centers often have counselors knowledgeable about the ins and outs of health care insurance.
If you own a home, you may be able to get a reverse mortgage, whereby the bank pays you a monthly amount based on the value of your home. The nice thing is that no matter how long you live, you can never be thrown out of your home.
Let’s talk about the emotional aspects of needing help. Every human being emerges from childhood reaching for and cherishing every possible sign of independence—the driver’s license, the first job, the first credit card, the first time we go out and don’t have to tell anybody where we are going or when we will be back, and so on. In these and many other ways, we demonstrate to ourselves as well as to others that we are “grown up”—in charge of our lives and able to take care of ourselves without any help from parents.
If a time comes when we must face the realization that we can no longer manage completely on our own, it may seem like a return to childhood and having to let somebody else be in charge of our lives. This can be very painful and embarrassing.
Some people in this situation become extremely depressed and can no longer find any joy in life. Others fight off the recognition of their need for help, thus placing themselves in possible danger and making life difficult and frustrating for those who would like to be helpful. Still others give up completely and expect others to take total responsibility for their lives, demanding attention and services from their children or other family members. If you are having one or more of these reactions, you can help yourself feel better and develop a more positive response.
The concept of “changing the things I can change, accepting the things I cannot change, and being able to know the difference” is really fundamental to being able to stay in charge of our lives. You must be able to evaluate your situation accurately. You must identify the activities that require the help of somebody else (going shopping and cleaning house, for instance) and those that you can still do on your own (getting dressed, paying bills, writing letters). Another way to look at this is to get help from others for the things you least like to do, giving you the time and energy to do the things you want to do.
This means making decisions, and as long as you are making the decisions, you are in charge. It is important to make a decision and take action while you are still able to do so, before circumstances intervene and the decision gets made for you. That means being realistic and honest with yourself. Decision-making tools can be found on pages 322-325.
Some people find that talking with a sympathetic listener, either a professional counselor or a sensible close friend or family member, is comforting and helpful. An objective listener can often point out alternatives and options you may have overlooked or were not aware of. The person can provide information or contribute another point of view or interpretation of a situation that you would not have come upon yourself. This can be an important part of the self-management process.
Be very careful, however, in evaluating advice from somebody who has something to sell you. There are many people whose solution to your problem just happens to be whatever it is they are selling—health or burial insurance policies, annuities, special and expensive furniture, “sunshine cruises,” special magazines, or health foods with magical curative properties.
In talking with family members or friends who offer to be helpful, be as open and reasonable as you can be and, at the same time, try to make them understand that you will reserve for yourself the right to decide how much and what kind of help you will accept. They will probably be more cooperative and understanding if you can say, “Yes, I do need some help with …, but I still want to do … myself.” More tips on asking for help can be found in Chapter 9.
Insist on being consulted. Lay the ground rules with your helpers early on. Ask to be presented with choices so that you can decide what is best for you as you see it. If you try to objectively weigh the suggestions made to you and not dismiss every option out of hand, people will consider you able to make reasonable decisions and will continue to give you the opportunity to do so.
Be appreciative. Recognize the goodwill and efforts of people who want to help. Even though you may be embarrassed, you will maintain your dignity by accepting with grace the help that is offered, if you need it. If you are truly convinced that you are being offered help you don’t need, you can decline it with tact and appreciation. For example, you can say, “I appreciate your offer to have Thanksgiving at your house, but I’d like to continue having it here. I could really use some help, though—maybe with the cleanup after dinner.”
If you reach the point of being unable to come to terms with your increasing dependence on others, you should consult a professional counselor. This should be someone who has experience with the emotional and social issues of people with disabling health problems.
Your local agency providing services to the disabled can refer you to the right kind of counselor. The local or national organization dedicated to serving people with your specific health condition (American Lung Association, American Heart Association, American Diabetes Association, etc.) can also direct you to support groups and classes to help you in dealing with your condition. You should be able to locate the agency you need through the telephone book Yellow Pages under the listing “social service organizations.” You can also do research on the Internet.
Akin to the fear and embarrassment of becoming physically dependent is the fear of being abandoned by family members who would be expected to provide needed help. Tales of being “dumped” in a nursing home by children who never come to visit haunt many people, who worry that this may happen to them.
We need to be sure that we do reach out to family and friends and ask for the help we need when we recognize that we can’t go on alone. It sometimes happens that in expectation of rejection, people fail to ask for help. Some people try to hide their need in fear that their need will cause loved ones to withdraw. Families often complain, “If we’d only known …,” when it is revealed that a loved one had needs for help that were unmet. If you really cannot turn to close family or friends because they are unable or unwilling to become involved in your care, there are agencies dedicated to providing for such situations. Through your local social services department’s “adult protective services” program or Family Services Association, you should be able to locate a “case manager” who will be able to organize the resources in your community to provide the help you need. The social services department in your local hospital can also put you in touch with the right agency.
When we experience any kind of a loss—small ones (such as losing one’s car keys) or big ones (such as losing a life partner or facing a disabling or terminal illness)—we go through an emotional process of grieving and coming to terms with the loss.
A person with a chronic, disabling health problem experiences a variety of losses. These include loss of confidence, loss of self-esteem, loss of independence, loss of the lifestyle we knew and cherished, and perhaps the most painful of all, loss of a positive self-image if our condition has an effect on appearance (such as rheumatoid arthritis or the residual paralysis from a stroke).
Elizabeth Kübler-Ross, who has written extensively about this process, describes the stages of grief:
Shock, when one feels both a mental and a physical reaction to the initial recognition of the loss
Denial, when the person thinks, “No, it can’t be true,” and proceeds to act for a time as if it were not true
Anger, when we fume “Why me?” and search for someone or something to blame (if the doctor had diagnosed it earlier, the job caused me too much stress, etc.)
Bargaining, when we promise, “I’ll never smoke again,” or “I’ll follow my treatment regimen absolutely to the letter,” or “I’ll go to church every Sunday, if only I can get over this.”
Depression, when awareness sets in, we confront the truth about the situation, and experience deep feelings of sadness and hopelessness
Acceptance, when we recognize that we must deal with what has happened and make up our minds to do what we have to do
We do not pass through these stages in a linear fashion. We are more apt to flip-flop between them. Don’t be discouraged if you find yourself angry or depressed again when you thought you had reached acceptance.
Fear of death is something most of us begin to experience only when something happens to bring us face to face with the possibility of our own death. Losing someone close, having an accident that might have been fatal, or learning we have a health condition that may shorten our lives usually causes us to consider the inevitability of our own eventual passing. Many people, even then, try to avoid facing the future because they are afraid to think about it.
Our attitudes about death are shaped by our own central attitudes about life. This is the product of our culture, our family’s influences, perhaps our religion, and certainly our life experiences.
If you are ready to think about your own future—about the near or distant prospect that your life will most certainly end at some time—then the ideas that follow will be useful to you. If you are not ready to think about it just yet, put this aside and come back to it later.
As with depression, the most useful way to come to terms with your eventual death is to take positive steps to prepare for it. This means to get your house in order by attending to all the necessary details, large and small. If you continue to avoid dealing with these details, you will create problems for yourself and for those involved with your situation.
There are several components to getting your house in order:
Decide and then convey to others your wishes about how and where you want to be during your last days and hours. Do you want to be in a hospital or at home? When do you want procedures to prolong your life stopped? At what point do you want to let nature take its course when it is determined that death is inevitable? Who should be with you—only the few people who are nearest and dearest or all the people you care about and want to see one last time?
Make a will. Even if your estate is a small one, you may have definite preferences about who should inherit what. If you have a large estate, the tax implications of a proper will may be significant. A will also ensures that your belongings go where you would like them to go. Without a will, some distant or “long-lost” relative may end up with your estate.
Plan your funeral. Write down your wishes or actually make arrangements for your funeral and burial. Your grieving family will be very relieved not to have to decide what you would want and how much to spend. Prepaid funeral plans are available, and you can purchase your burial space in the location and of the type you prefer.
Draw up a durable power of attorney for health care and also one for managing your financial affairs. (These are discussed later in this chapter.) You should also discuss your wishes with your personal physician, even if he or she doesn’t seem interested. (Your physician may also have trouble facing the prospect of losing you.) Have some kind of document or notation included in your medical records that indicates your wishes in case you can’t communicate them when the time comes.
Be sure that the persons you want to handle things after your death are aware of all that they need to know about your wishes, your plans and arrangements, and the location of necessary documents. You will need to talk to them, or at least prepare a detailed letter of instructions and give it to someone who can be counted on to deliver it to the proper person at the appropriate time. This should be a person close enough to you to know when that time is at hand. You may not want your spouse to have to take on these responsibilities, for example, but your spouse may be the best person to keep your letter and know when to give it to your designated agent.
You can purchase at any well-stocked stationery store a kit in which you place a copy of your will, your durable powers of attorney, important papers, and information about your financial and personal affairs. Another useful source to help organize this information is “My Life in a Box”, which is noted in the reading and resources lists at the end of this chapter. There are forms that you fill out about bank and charge accounts, insurance policies, the location of important documents, your safe deposit box and where the key is kept, and so on. This is a handy, concise way of getting everything together that anyone might need to know about. Some of us keep these documents on our computers. If this is the case, be sure others can find your passwords and accounts.
Finish your dealings with the world around you. Mend your relationships. Pay your debts, both financial and personal. Say what needs to be said to those who need to hear it. Do what needs to be done. Forgive yourself. Forgive others.
Talk about your feelings about your death. Most family and close friends are reluctant to initiate such a conversation but will appreciate it if you bring it up. You may find that there is much to say to and to hear from your loved ones. If you find that they are unwilling to listen to you talk about your death and the feelings that you are experiencing, find someone who will be comfortable and empathetic in listening to you. Your family and friends may be able to listen to you later on. Remember, those who love you will also go through the stages of grieving when they have to think about the prospect of losing you.
A large component in the fear of death is fear of the unknown: “What will it be like?” “Will it be painful?” “What will happen to me after I die?”
Most people who die of a disease are ready to die when the time comes. Painkillers and the disease process itself weaken body and mind, and the awareness of self diminishes without the realization that this is happening. Most people just “slip away,” with the transition between the state of living and that of no longer living hardly identifiable. Reports from people who have been brought back to life after being in a state of clinical death indicate they experienced a sense of peacefulness and clarity and were not frightened.
A dying person may sometimes feel lonely and abandoned. Regrettably, many people cannot deal with their own emotions when they are around a person they know to be dying and so deliberately avoid his or her company, or they may engage in superficial chitchat, broken by long, awkward silences. This is often puzzling and hurtful to those who are dying, who need companionship and solace from the people they counted on.
You can sometimes help by telling your family and friends what you want and need from them—attention, entertainment, comfort, practical help, and so on. Again, a person who has something positive to do is more able to cope with difficult emotions. If you can engage your family and loved ones in specific activities, they can feel needed and can relate to you around the activity. This will give you something to talk about, to occupy time, or at least provide a definition of the situation for them and for you.
In most parts of the United States, as well as in many other parts of the world, both palliative care and hospice care are available. In everyone’s life there comes a time when regular medical care is no longer helpful and we need to prepare for death. This preparation means that medical and other care is aimed at making the patient as comfortable as possible and providing a good quality of life. Recently we have learned that at least for some diseases, people who receive hospice care actually live longer than those who receive more aggressive treatment. Today we often have several weeks or months, and sometimes years, to make these preparations. This is when hospice care is so very useful. The aim of hospice care is to provide the terminally ill patient (someone who is expected to die within months) with the highest quality of life possible. Palliative care is available for those expected to live more than 6 months. At the same time, hospice professionals help both the patient and the family prepare for death with dignity and also help the surviving family members. Today most hospices are “in-home” programs. This means that the patient stays in his or her own home and the services come to them. In some places there are also residential hospices where people can go for their last days.
One of the problems with hospice care is that often people wait until the last few days before death to ask for this care. They somehow see asking for hospice care as “giving up.” By refusing hospice care, they often put an unnecessary burden on themselves, friends, and family. The reverse is also often true. Families say they can cope without help. This may be true, but the patient’s life and dying may be much better if hospice cares for all the medical things so that family and friends are free to give love and support.
Hospice care can be most useful in the months before death. Most hospices only accept people who are expected to die within 6 months. This does not mean that you will be thrown out if you live longer. It is important that you recognize that if you, a family member, or a friend is in the end stage of illness, you should find and make use of your local hospice. It is a wonderful final gift.
Although none of us can have absolute control over our own death, this, like the rest of our lives, is something we can help manage. That is, we can have input, make decisions, and probably add a great deal to the quality of our death. Proper management can lessen the negative impact of our death on our family and friends. An advance directive can help you manage some of the medical and legal issues concerning death as well as help you plan for both expected and unexpected end-of-life situations.
Advance directives are written instructions that tell your doctor what kind of care you would like to receive if and when you are not able to make medical decisions for yourself—for example, if you are unconscious, in a coma, or mentally incompetent. Usually an advance directive describes both the types of treatments you want and those you do not want. There are different types of advance directives.
A living will is a document that states the kind of medical or life-sustaining treatments you would want if you were seriously or terminally ill. A living will, however, does not let you appoint someone to make those decisions for you.
A durable power of attorney (DPA) for health care allows you to name someone to act for you as your agent but also gives guidelines to your agent about your health care wishes. If you want, you can let your agent make the decisions. Many people, however, prefer to give guidance to their agent. This guidance can indicate almost anything you want done for your care; it may range from the use of aggressive life-sustaining measures to the withholding of these measures. Whereas a living will is good only in the case of a terminal illness, a DPA can be used anytime you are unconscious or unable to make decisions due to any illness, accident, or injury. It is important to understand that a durable power of attorney for health care allows you to appoint someone else to act as your agent for only your health care; it does not give this person the right to act on your behalf in other ways, such as in handling your financial matters. In general, a DPA is more useful than a living will because it allows you to appoint someone to make decisions for you, and it can be activated at any time when you are unable to make decisions. The only time a DPA may not be the best choice is if there is no one you trust to act on your behalf.
A do not resuscitate (DNR) order is a request not to be given cardiopulmonary resuscitation (CPR) if your heart stops or if you stop breathing. A DNR can be included as part of a living will or durable power of attorney for health care; however, you do not need to have either of those in order to have a DNR order. Your doctor can put a DNR in your medical chart so that it may guide the actions of the hospital and any health care provider. You can also put a DNR on your refrigerator so that emergency personnel will know your wishes. Without a DNR order, hospital or emergency personnel will make every effort to resuscitate you. DNR orders are accepted in all states.
Although advance directives for health care are generally used for end-of-life situations, they may also be prepared to direct the type of mental health treatment one wishes to receive in the event a person with mental illness becomes incapacitated due to that illness. Under federal law, most states may combine advance directives for health care and mental health care in one document and allow you to appoint an agent to act on your behalf for both health and mental health issues. Some states, however, require separate documents, which also allow you to choose different agents, one for health care and another for mental health care. For more information on mental health advance directives and the specific practices in your state, check the Web site of the National Resource Center on Psychiatric Advance Directives given at the end of this chapter.
A power of attorney (POA) is a document that gives someone you appoint the power to make your financial or business decisions. If you are no longer able to make these decisions and you need to pay for care, your family or friends or even sometimes the state will have to go to court. This can be very expensive. You may want to talk to your lawyer about the advantages and disadvantages of a POA.
Adults (anyone age 18 or older) should prepare a durable power of attorney for health care. Unexpected events can happen to anyone at any age. This is a different document from a regular power of attorney. The DPA for health care applies only to health care decisions. Here is what you need to do.
Choose your agent. Your agent can be a friend or family member. It cannot be the physician who is providing your care. Here are things to consider as you make this important choice. This person should probably live in your area. If the agent is not available on short notice to make decisions for you, he or she is not much help. Just to be on the safe side, you can also name a backup or secondary agent who would act for you if your primary agent were not available.
Be sure that your agent thinks like you or at least would be willing to carry out your wishes. You must be able to trust that this person has your interests at heart and truly understands and will respect your wishes.
The person should be someone who you feel would be able to carry out your wishes. He or she should be mature, composed, and comfortable with your wishes. Sometimes a spouse or child is not the best agent because this person is too close to you emotionally. For example, if you wished not to be resuscitated in the case of a severe heart attack, your agent has to be able to tell the doctor not to resuscitate. This could be very difficult or impossible for a family member to decide then and there. Be sure the person you choose as your agent is up to this task and would not say “do everything you can” at this critical time. You want your agent to be someone who will not find this job too much of an emotional burden. The person has to be comfortable with the role, as well as willing and able to carry out your wishes. In review, look for the following characteristics in an agent:
Someone who is likely to be available should they need to act for you
Someone who understands your wishes and is willing to carry them out
Someone who is emotionally prepared, able to carry out your wishes, and will not feel burdened by doing so
Finding the right agent is a very important task. This may mean talking to several people. These may be the most important interviews that you will ever conduct. We will talk more about discussing your wishes with family, friends, and doctor later.
Determine what you want. In other words, what are your directions to your agent? What you want will be guided by your beliefs and values. Some DPA forms give several general statements of desires concerning medical treatment. These can help you decide on your wishes. Here are some examples:
I do not want my life to be prolonged and I do not want life-sustaining treatment to be provided or continued (1) if I am in an irreversible coma or persistent vegetative state or (2) if I am terminally ill and the application of life-sustaining procedures would serve only to artificially delay the moment of my death or (3) under any other circumstances where the burdens of the treatment outweigh the expected benefits. I want my agent to consider the relief of suffering and the quality as well as the extent of the possible extension of my life in making decisions concerning life-sustaining treatment.
I want my life to be prolonged, and I want life-sustaining treatment to be provided unless I am in a coma or vegetative state that my doctor reasonably believes to be irreversible. Once my doctor has reasonably concluded that I will remain unconscious for the rest of my life, I do not want life-sustaining treatment to be provided or continued.
I want my life to be prolonged to the greatest extent possible without regard to my condition, the chances I have for recovery, or the cost of the procedures.
If you use a form containing such suggested general statements, all you need to do is initial the statement that applies to you.
Other forms make a “general statement of granted authority,” in which you give your agent the power to make decisions. However, you do not write out the details of what these decisions should be. In this case, you are trusting that your agent will follow your wishes. Since these wishes are not explicitly written, it is very important that you have discussed them in detail with your agent.
All forms also have a space in which you can write out any specific wishes. You are not required to give specific details but may wish to do so.
Knowing what details to write is a little complicated. None of us can predict the future or knows the exact circumstances in which the agent will have to act. You can get some idea by asking your doctor what he or she thinks are the most likely developments for someone with your condition. Then you can direct your agent on how to act. Your directions can discuss outcomes, specific circumstances, or both. If you discuss outcomes, the statement should focus on which types of outcomes would be acceptable and which would not—for example, “resuscitate if I can continue to fully function mentally.” The following are some of the more common specific circumstances encountered with major chronic diseases.
You have been diagnosed with Alzheimer’s disease and other neurologic problems that may eventually leave you with little or no mental function. As noted earlier, these are generally not life-threatening, at least not for many years. However, things happen to these patients that can be life-threatening, such as pneumonia and heart attacks. What you need to do is decide how much treatment you want. For example, do you want antibiotics if you get pneumonia? Do you want to be resuscitated if your heart stops? Do you want a feeding tube if you are unable to feed yourself? Remember, it is your choice as to how you answer each of these questions. You may not want to be resuscitated but may want a feeding tube. If you want aggressive treatment, you may want to use all means possible to sustain life; alternatively, you may not want any special means to be used to sustain life. For example, you may want to be fed but may not want to be placed on life-support equipment.
You have very bad lung function that will not improve. Should you become unable to breathe on your own, do you want to be placed in an intensive care unit on a mechanical ventilator (a breathing machine)? Remember, in this case you will not improve. To say that you never want ventilation is very different from saying that you don’t want it if it is used to sustain life when no improvement is likely. Obviously, mechanical ventilation can be lifesaving in cases such as a severe asthma attack when it is used for a short time until the body can regain its normal function. Here the issue is not whether to use mechanical ventilation ever but rather when or under what circumstances you wish it to be used.
You have a heart condition that cannot be improved with surgery. You are in the cardiac intensive care unit. If your heart stops functioning, do you want to be resuscitated? As with artificial ventilation, the question is not “Do you ever want to be resuscitated?” but rather “Under what conditions do you or do you not want resuscitation?”
From these examples you can begin to identify some of the directions that you might want to give in your advance directive or durable power of attorney for health care. Again, to understand these better or to make them more personal to your own condition, you might want to talk with your physician about what the common problems and decisions are for people with your condition.
In summary, there are several decisions you need to make in directing your agent on how to act in your behalf:
Generally, how much treatment do you want? This can range from the very aggressive—that is, doing many things to sustain life—to the very conservative—which is doing almost nothing to sustain life, except to keep you clean and comfortable.
Given the types of life-threatening events that are likely to happen to people with your condition, what sorts of treatment do you want and under what conditions?
If you become mentally incapacitated, what sorts of treatment do you want for other illnesses, such as pneumonia?
Although each state has different regulations and forms for advance directives, the information presented here should be useful wherever you live. Check out some of the Web sites at the end of this chapter for forms you can download. You can also find them at the local health department, Area Agency on Aging, hospitals, or even the offices of your health care providers. For information about advance directives in other countries, go to http://www.growthhouse.org/.
Note that many states recognize durable powers of attorney for health care that are created in another state. However, this is not always the case. As of now, this is an unclear legal issue. To be on the safe side, if you move or spend a lot of time in another state, it is best to check with a lawyer in that state to see if your document is legally binding there.
Writing down your wishes and having a durable power of attorney is not the end of the job. A good manager has to do more than just write a memo. He or she has to see that the memo gets delivered. If you really want your wishes carried out, it is important that you share them fully with your agent, your family, and your doctor. This is often not an easy task.
Before you can have this conversation, though, everyone involved needs to have copies of your DPA for health care. Once you have completed the documents, have them witnessed and signed. In some places you can have your DPA notarized instead of having it witnessed. Make several copies at a copy center. You will need copies for your agents, family members, and doctors. Also, it does not hurt to give one to your lawyer.
Now you are ready to talk about your wishes. People don’t like to discuss their own death or that of a loved one. Therefore, it is not surprising that when you bring up this subject, the response is often “Oh, don’t think about that,” or “That’s a long time off,” or “Don’t be so morbid; you’re not that sick.” Unfortunately, this is usually enough to end the conversation. Your job as a good self-manager is to keep the conversation open. There are several ways to do this. First, plan on how you will have this discussion. Here are some suggestions.
Prepare your durable power of attorney, and then give copies to the appropriate family members or friends. Ask them to read it and then set a specific time to discuss it. If they give you one of the avoidance responses, explain that you understand that this is a difficult topic but that it is important to you that you discuss it with them. This is a good time to practice the “I” messages discussed in Chapter 9—for example, “I understand that death is a difficult thing to talk about. However, it is very important to me that we have this discussion.”
Another strategy might be to get blank copies of the DPA form for all your family members and suggest that you all fill them out and share them. This could even be part of a family get-together. Present this as an important aspect of being a mature adult and family member. Making this a family project involving everyone may make it easier to discuss. Besides, it will help clarify everyone’s values about death and dying.
If these two suggestions seem too difficult or for some reason are impossible to carry out, you might write a letter or e-mail or prepare a video or CD that can then be sent to family members. Talk about why you feel your death is an important topic to discuss and that you want them to know your wishes. Then state your wishes, providing reasons for your choices. At the same time, send them a copy of your DPA for health care. Ask that they respond in some way or that you set aside some time to talk in person or on the phone.
Of course, as mentioned previously, when deciding on your agent, it is important that you choose someone with whom you can talk freely and exchange ideas. If your chosen agent is not willing to or is unable to talk to you about your wishes, you have probably chosen the wrong agent. Remember, the fact that someone is very close to you does not mean that he or she really understands your wishes or would be able to carry them out. This topic should not be left to an unspoken understanding unless you don’t mind if your agent decides differently from what you wish. For this reason, choosing someone who is not as close to you emotionally and then talking things out with your agent are essential. This is especially true if you have not written out the details of your wishes.
From our research, we have learned that people often have a more difficult time talking to their doctors about their wishes surrounding death than to their families. In fact, only a very small percentage of people who have written DPAs for health care or other advance directives ever share these with their physician.
Even though it is hard, it is important to talk with your doctor. You need to be sure that your doctor’s values are similar to yours. If you and your doctor do not have the same values, it may be difficult for him or her to carry out your wishes. Second, your doctor needs to know what you want. This allows him or her to take appropriate actions such as writing orders to resuscitate or not to use mechanical resuscitation. Third, your doctor needs to know who your agent is and how to contact this person. If an important decision has to be made and your wishes are to be followed, the doctor must talk with your agent.
Be sure to give your doctor a copy of your DPA for health care so that it can become a permanent part of your medical record.
As surprising as it may seem, many physicians also find it hard to talk to their patients about their end-of-life wishes. After all, doctors are in the business of keeping people alive and well; they don’t like to think about their patients dying. On the other hand, most doctors want their patients to have durable powers of attorney for health care. These documents relieve both you and your doctor from pressure and worry.
If you wish, plan a time with your doctor when you can discuss your wishes. This should not be a side conversation at the end of a regular visit. Rather, start a visit by saying, “I want a few minutes to discuss my wishes in the event of a serious problem or impending death.” When put this way, most doctors will make time to talk with you. If the doctor says that he or she does not have enough time, ask when you can make another appointment to talk with him or her. This is a situation where you may need to be a little assertive. Sometimes a doctor, like your family members or friends, might say, “Oh, you don’t have to worry about that; let me do it,” or “We’ll worry about that when the time comes.” Again, you will have to take the initiative, using an “I” message to communicate that this is important to you and that you do not want to put off the discussion.
Sometimes doctors do not want to worry you. They think they are doing you a favor by not describing all the unpleasant things that might happen to you or the potential treatments in case of serious problems. You can help your doctor by telling him or her that having control and making some decisions about your future will ease your mind. Not knowing or not being clear on what will happen is more worrisome than being faced with the facts, unpleasant as they may be, and dealing with them.
Even knowing all that’s been said so far, it is still sometimes hard to talk with your doctor. Therefore, it might also be helpful to bring your agent with you when you have this discussion. The agent can facilitate the discussion and at the same time make your doctor’s acquaintance. This also gives everyone a chance to clarify any misunderstandings. It opens the lines of communication so that if your agent and physician have to act to carry out your wishes, they can do so with few problems. If you aren’t able to talk with your doctor, it is still important that he or she receive a copy of your DPA for health care for your medical record.
When you go the hospital, be sure the hospital has a copy of your DPA. If you cannot bring it, be sure your agent knows to give a copy to the hospital. This is important, as your doctor may not be in charge of your care in the hospital.
There is one thing not to do. Do not put your durable power of attorney in your safe deposit box—no one will be able to get it when it is needed. And by the way, you do not need to see a lawyer to draw up a durable power of attorney. You can do this by yourself with no legal assistance.
Now that you have done all the important things, the hard work is over. However, remember that you can change your mind at any time. Your agent may no longer be available, or your wishes might change. Be sure to keep your DPA for health care updated. Like any legal document, it can be revoked or changed at any time. The decisions you make today are not forever.
Making your wishes known about how you want to be treated in case of serious or life-threatening illness is one of the most important tasks of self-management. The best way to do this is to prepare a durable power of attorney for health care and share this with your family, close friends, and physician.
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