Living a Healthy Life with Chronic Pain (49 page)

Nothing seems to inspire more fear than the prospect of having to go to a nursing home. Horror stories in the news help foster anxiety about the awful fate that will befall anyone who has the misfortune to have to go there. But it must be remembered that nursing homes serve a critical role in our communities. When one really needs a nursing home, usually no other care situation will meet this need.

Public scrutiny is valuable to ensure proper standards of care. If you are not satisfied with the level of care you receive, contact your local elected representative or advocacy group. In the United States, 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. Or look online or in the Yellow Pages under “social service organizations” for agencies that can help you with this. In Canada, provincial ministries of health monitor all care facilities.

Most nursing homes provide humane and competent care. If you need to move to a nursing home, there may be several options in your area. Have family or friends visit several facilities and make recommendations. If you don’t know where to start, seek out the help of a hospital discharge planner, social worker, or similar professional.

In addition to fearing 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.

Make it your business to find out which health benefits are covered and which are not by your personal and employer health insurance plans and your state, provincial, and federal health and disability plans. Some plans may cover home care and nursing home care. Some may provide benefits to you and your dependent children if you are too sick or disabled to work. Given how complex this can be, we suggest you contact your local senior center, disability center, Area Agency on Aging in the United States, and other appropriate government departments to find trustworthy sources of information.

Every human being emerges from childhood reaching for and cherishing every possible sign of independence—your driver’s license, your first job, your first credit card, the first time you go out and don’t have to tell anybody where you are going or when you will be back, and so on. In these and many other ways, you have demonstrated to yourself as well as to others that you are “grown up”—in charge of your life and able to take care of yourself without help.

If a time comes when you must face the realization that you can no longer manage completely on your own, it may seem like a return to childhood and allowing somebody else to be in charge of your life. 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 resist recognizing 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 by developing a more positive response.

To be able to stay in charge of your life, it is important to understand the concept of “changing the things I can change, accepting the things I cannot change, and being able to know the difference.” You must be able to evaluate your situation accurately. You need to 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 or e-mails). Another way to approach 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 in
Chapters 2
.

Some people find that talking with a sympathetic listener is comforting and helpful. This can be either a professional counselor or a sensible close friend or family member. 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 that you would not have come upon yourself. Talking things over with someone else can be an important part of the self-management process.

Be very careful, however, when 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. This may include health or burial insurance policies, annuities, special and expensive furniture, “sunshine cruises,” special magazines, or health foods with magical curative properties.

When talking with family members or friends, be as open and reasonable as you can. At the same time, 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 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
Chapters 10
.

Lay the ground rules with your helpers early on. Insist on being consulted about the things that affect you. Ask to be presented with choices so that you can decide what is best for you as you see it. If you objectively weigh all suggestions 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 are truly convinced you are being offered help you don’t need, 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 are unable to come to terms with your increasing dependence on others, 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 that provides services to the disabled can refer you to the right kind of counselor. The national organization dedicated to serving people with your specific health condition (Chronic Pain Association, Arthritis Foundation or Society, Canadian Pain Coalition, etc.) can also direct you to support groups and classes to help you deal with your condition. Look under
“social service organizations” in the Yellow Pages, or find what you need online.

Similar to the fear of becoming physically dependent is the fear of being abandoned by family members who you expect to provide help and companionship. Tales of being “dumped” in a nursing home by children who never come to visit haunt many people. They worry that this may happen to them.

When you recognize that you can’t go on alone, you need to reach out to family and friends for help. Expecting rejection, some people fail to do this. They try to hide their need, fearing it will cause loved ones to withdraw. Yet 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. Contact the “adult protective services” program of your local social services department or such nonprofit organizations as the Family Service Association. They should be able to connect you to a “case manager” who can organize the resources in your community to provide the help you need. The social services department at your local hospital can also put you in touch with the right agency.

When we experience any kind of a loss, we go through an emotional process of grieving and coming to terms with the situation. The loss can be small, such as losing one’s car keys, or big, such as facing life with chronic pain or losing a life partner.

A person with a health problem such as chronic pain experiences a variety of losses. These may include loss of confidence, loss of self-esteem, loss of independence, loss of the lifestyle we knew and cherished, loss of employment, and perhaps loss of a positive self-image if our condition has an effect on appearance (such as rheumatoid arthritis).

Psychiatrist Elisabeth Kübler-Ross has written extensively about loss. Here is how she describes the stages of grief:

• Shock,
  when one feels both a mental and physical reaction to the initial recognition of the loss
  

• Denial,
  when the person thinks, “No, it can’t be true,” and proceeds to act as if it were not true
  

• Anger,
  when we fume “Why me?” and search for someone or something to blame (the doctor for not diagnosing it earlier, the job for causing too much stress, etc.)
  

• Bargaining,
  when we promise to behave better from now on (“I’ll never smoke again,” “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
  

People 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 brings us faceto-face with the possibility of our own death. Losing someone close, having an accident that might have been fatal, or learning you have a health condition that may shorten your life usually causes you to consider the inevitability of your own eventual passing. Even then, many people try to avoid facing the future because they are afraid to think about it.

Your attitudes about death are shaped by your central attitudes about life. This is the product of your culture, your family’s influences, perhaps your religion, and certainly your 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 chapter aside and come back to it later.

The most useful way to come to terms with your eventual death is to take positive steps to prepare for it. This means 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 those around you.

There are several components to this process:

• Decide and then convey to others your wishes for 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 the type of burial space you’d like and in the location you prefer.
  

• Draw up a durable power of attorney covering your medical and financial affairs.
  This is called a representation agreement in Canada. You want one for health care and one for your financial affairs. 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 such as an advance directive included in your medical records that indicates your wishes in case you can’t communicate them when the time comes. (See
  page 335
  –
  340
  for more on this important topic.)
  

The person you want to handle things after your death needs to know about your wishes, your plans and arrangements, and the location of necessary documents. You will need to talk to her or him, 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 person should be 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 he or she may be the best person to keep your letter and know when to give it to your designated agent.

You can purchase a kit at any well-stocked stationery store in which you place a copy of your will, your durable powers of attorney, information about your financial and personal affairs, and other important papers. Another useful source to help organize this information is “My Life in a Box” (see the Resources section at the end of this chapter). This kit contains forms that you fill out with bank and charge account details, insurance policies, the location of important documents, your safe deposit box and its key, and so on. This is a handy, concise way to get everything together that anyone might need to know about. If you choose to keep these documents on your computer, be sure others have access to your passwords and accounts.

After the practical matters are attended to, turn to your emotional needs. 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. Initiate “courageous conversations,” as author Jane Blaufus describes in her book written about her husband’s sudden death. You may find 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 you are experiencing, find someone who is comfortable and empathetic doing so. 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 facing death is fear of the unknown. You may wonder: “What will it be like?” “Will it be painful?” “What will happen to me after I die?” Most people with a
terminal disease are ready to die when the time comes. Many just “slip away,” with the transition between the state of living and no longer living hardly identifiable. People who have been brought back to life after being in a state of clinical death report experiencing 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. They may deliberately avoid his or her company, or engage in superficial chitchat broken by long, awkward silences. This is often puzzling and hurtful to those who are dying. They need companionship and solace from the people they love and count 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. 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 and occupy time, or at least it will provide a definition of the situation for them and for you.