Persons who have serious illnesses or who are called very "frail" understand all too well that there that they have unique questions, fears and hopes. And if they depend on a caregiver, the caregiver has unique needs. The unique questions, fears, needs, and hopes will make both patients and caregivers think differently about the meaning of life, their past and their future.

The following information is a summary of thousands of responses to this survey. If focuses on two very important solution to the many issues very ill patients and their caregivers often face.

Most important is the need for patients and caregivers is to take care of themselves.

1. First, people need to understand the situation.

   By doing this they will be better able to live in the present and more easily accept the future. At times it may seem as though the effort isn't worth it, that they are "too sick" or there "isn't enough time." But many people with serious problems find it much more helpful to:

   • Understand limits, what they can reasonably expect of themselves.
   • Take time to sort things out
   • Talk over important problems with others
   • Learn as much as possible about what is happening now and what may happen in the future

   The questions that were just answered at HowsYourHealth are designed to help people, their families, and their caregivers better understand their situation.

2. Secondly, when someone has a serious illness, it is important to:
   • Eat as well as possible.
   • Exercise, within the limits of the illnesses.
   • Get adequate rest.
   • Do enjoyable things.

   For example, if when people are able to get some physical exercise they may feel better. This can involve anything from daily stretches and a short walk to a more involved exercise program.

3. Name and discuss feelings.

   Serious illnesses impact feelings. When someone has a serious illness, family roles change. Many people find that they have conflicts, ongoing difficulties in relationships, and communication problems.

   Patients, families, and caregivers might try marking on the following list of "pairs" how they are feeling. For example, if one person feels a lot of hope, they would put their mark next to or on the word "hope".

   Hope <----------------------->Despair (Hopeless)
   Denial <----------------------->Acceptance
   Meaninglessness <----------------------->Meaningfulness
   Independence <----------------------->Accepting, dependency
   Family burden <----------------------->Opportunity to serve
   Uncertainty(Ambiguity) <----------------------->Certainty of outcome
   Making plans <----------------------->Unable to plan
   Holding on <----------------------->Letting go
   Speaking openly <----------------------->Not talking
   Family as it was <----------------------->Family as it is becoming

   It is helpful to talk about where the marks are located. Note that the best "place" to be is usually not at one end or the other, but somewhere in between. Once people talk about their answers, they find it much easier to think about how they will manage the present and future.

   After the questions are answered, people can talk about ways to keep the illness from getting in the way of sharing, support, and love.

   For Example:

   • What roles are the ill person giving up?
   • Who is affected by the illness?
   • What changes need to be made?
   • What are the expectations of friends and family members?
   • What else do friends and family have to deal with?
   • Who will help in decision-making?
   • What are the economic resources?
   • What are the spiritual and religious resources?

People who have serious illnesses almost always have fears. The three most common fears are fear of being a burden, fear of pain, and fear of losing control. The sicker the person is the greater the number of fears UNLESS she or he feels confident. Think about that...if a very sick person (or caregiver) can become more confident many of the fears and concerns disappear.

Confidence to manage and control health and life problems is very important. Confidence can be made by:

• better understanding of what is wrong and what might go wrong, and
• knowing how to make adjustments when things go wrong.

For example, a patient with heart failure who knows how to adjust fluid pills (diuretics) when the weight is too high can keep from becoming short of breath and going back to the hospital, and becoming badly frightened.

The HowsYourHealth questions you just answered help patients, caregivers, and health professsional identify important needs and fears. They can then talk about ways to become more confident and less afraid. HowsYourHealth also has a tool called Problem Solving that can be very helpful for patients and caregivers to solve problems and become more confident.

While it may help you to talk with others about concerns, problems and fears, it is important for you to remember there is no right or wrong way to talk---or NOT talk. (It is normal to have a need for silence some of the time).

People with serious illnesses find different ways to get help. Family members and friends as well as support groups and trained counselors can help. There are also excellent resources in libraries, bookstores and the internet that can help live with serious illness.

For more information contact:
Hospice at the American Hospice Foundation,
www.americanhospice.org (202-223-0204)

We have tried to make the How's Your Health error-free. However, those involved in its preparation can not warrant that all of the information is accurate and complete. When you use How's Your Health as a guide for your health and medical care, be sure to discuss any questions about it with your doctor, nurse, or other health care worker.