Excerpt from Chapter 1: 

The Journey Begins

The Emotional and Spiritual Voyage

The Caregiver's Journey

The second your loved one is diagnosed with a terminal illness, everything changes. New roles are assigned to everyone and suddenly you are the caregiver. You might have done it before, for a few days or a week, but now you’ve been handed a full-time job that is both emotionally and physi­cally overwhelming. As you take on this position you should know the givens:

  1. Your loved one’s illness will never happen at a convenient time.
  2. You won’t have enough time or money to help out the way you would like.
  3. Just when you think you’ve got all the caregiving solved, something will happen to make it all fall apart and you’ll have to start over.
  4. You will probably quarrel with a close family relative about how to give the best care possible.
  5. At times you may feel overwhelmed by grief.
  6. There will be moments when you will probably feel resentment followed quickly by enormous guilt.
  7. You will start sacrificing your health for your loved one’s.
  8. You might reach a point where you are burnt-out and absolutely certain that you cannot go one more day.
  9. Despite all of the above, in the end, you will be glad you were there.

Anticipatory Grief

Just as your loved one struggles to cope with his final journey, you too are preparing yourself for what you will do after he is gone. Your journey can be filled with anger, sorrow, and guilt. As a way of coping with the pain, you may find yourself detaching from your loved one and grieving his loss before it happens. This is known as anticipatory grief, and it is a natural

You may experience anticipatory grief so intensely that when your loved one dies, you feel numb. This can cause you to question your love, and yourself. All of this is normal. Anticipatory grief does not take the place of grief after death—that grief comes to each of us in its own way.

Excerpt from Chapter 9

The Caregivers Manual

Symptom Management

Breathing Difficulties

Shortness of breath (also called dyspnea and air hunger) is very common at the end of life and can cause anxiety and panic in the patient. Signs to look for are: rapid breathing, use of the muscles in the neck and chest to gasp for air, bluish color to lips and fingertips, and gasping, wheezing, and grunting.


  • Lung congestion
  • Tumor spread
  • Anemia
  • Abdominal distention from enlarged organs or tumors
  • Heart failure
  • Anxiety
  • Airway constriction from emphysema, asthma, COPD or other reactive airway diseases
  • Extra fluid in the space around the lungs
  • Increased airway secretions

What can I do for breathing difficulties?

  1. Keep calm. Raise the head of the patient’s bed.
  2. A fan in the room relieves shortness of breath by moving the air.
  3. If the patient has copious secretions and is choking, turn him way over on his side, even hanging his head off the bed, to drain out the mucous. Gently pound on back.
  4. You can even use a washcloth or turkey baster to remove the secretions.

Medications for Breathing Difficulties:

  • Morphine is one of the best medications for disease-related breathing difficulties.
  • Ativan will help anxiety.
  • Lasix is sometimes prescribed for lung congestion—it is a diuretic that removes extra fluid from the inside of the lungs.
  • Inhalers or nebulizing treatments
  • Thorazine can be prescribed for extreme, persistent air hunger, and for sedation of the patient, near the end of life
  • If the fluid is around the lung, a doctor can tap the space to drain the fluid out (thoracentesis).
  • For thick secretions, use Mucinex or guaifenesin syrup.
  • Medications to dry up secretions: Robinul, atropine drops in mouth, scopolamine patch.

Why Morphine Helps With Shortness of Breath

Morphine relaxes the blood vessels, so the heart doesn’t have to work so hard. With the heart not working as hard and needing less oxygen, it stops sending distress signals to the brain. It slows and makes each breath more effective. It also helps deaden some of the natural chemical substances in your body that cause you to become tense and excited.

Excerpt from Chapter 10:

Pain—The Biggest Fear

Not all dying people have pain, yet people fear unrelieved pain more than they fear death itself. As a caregiver, the ultimate priority should be good pain control. This means giving the best medication at the right time.

Living As Pain Free As Possible

This chapter is a complete guide to pain: what causes it and what you, the caregiver can do to make your patient’s life as pain-free as possible. We don’t assume that you have a medicine cab­inet full of prescription drugs, but we do believe it’s important for caregivers to understand the meds that can help their patient and be able to discuss options with the healthcare provider.

Katie: The number one goal in my line of business is good pain control. The first question I ask when I walk through the door of a patient’s home is, ‘Are you comfortable?’ If the patient is in pain everything else goes out the window. He can’t eat. He can’t get his affairs in order. He can’t enjoy visitors or even communicate with loved ones. 

The Four Basic Principles of Good Pain Control

  1. If a patient says she’s hurting, she’s hurting.
  2. Each person’s pain must be treated individually.
  3. Everyone has the right to have his pain relieved and to stay as mentally clear as possible.
  4. A person should be involved in her pain meds plan, as much as possible.

Jahnna: When Dad’s prostate cancer moved to his bones he had agonizing back pain. One doctor prescribed a series of narcotics that only made him goofy. He was afraid his lift chair was out to get him and he kept trying to exit the house through the fireplace. But his pain was still there. Katie suggested we try an anti-inflammatory to help with the tumors pressing on the spine. We gave him three Advil twice a day and it was like a miracle—the pain in his back almost disappeared. And we were able to significantly lower his narcotic dose. (He was happily back in his lift chair and when he left the house he went through the front door!)

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