Caregiver’s guidelines to
becoming the most effective caregiver.

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This is one of the most difficult times in your life - loving a loved one who was once so full of life and now having cope with the inevitable. There is no “best way” to deal with the circumstances. But, many have found that early acknowledgement and acceptance of the fact that your loved one is at the end of life gives your loved one a sense of peace and allows both parties time to address and discuss many necessary issues. Subsequently, no one feels cheated of saying goodbye.

           Accepting that your loved one is at the end of life also allows you to become a more effective caregiver in that you are now ready to concentrate on making this time the best ever. That is, concentrating on increasing the quality of life more than concentrating on the quantity of life. This does not in any way mean that you have given up. Giving up is easy!  As a matter of fact, your job is now a little harder. Being an effective caregiver now means that you have to understand what your loved one is feeling, learn what to do to help and when to call for help.

There are spoken and unspoken complaints that cause emotional and physical distress for your loved one. Do you notice or are there complaints of:

1. Tiredness or lack of energy?

FATIGUE

This is usually the most common complaint. It does not mean that your loved one has given up. It is beyond his/her control. With terminal illness comes an unexplainable feeling of tiredness that is actually quite distressing for the patient. It severely and negatively impacts on the quality of life. Sometimes steroids or an immune system booster may be given with some relief.

           What can I do as the caregiver?

• If prescribed, please give medication regularly.

• Give permission for your loved one to rest.

• Do not impose guilt for not being more energetic.

• Structure activities that conserve energy and include time for rest.

• If you think it is distressing to your loved one, please call.

2. Loss of appetite and weight loss?

ANOREXIA/CACHEXIA

“Wasting illnesses” are caused by the disease process and is usually not reversible with improved nutrition. Force-feeding your loved one, at times, results in more discomfort. Sometimes wasting may be due to dry mouth, constipation, upset stomach and chronic pain.

           What can I do as a caregiver?

Replace your need to feed by: moistening lips and mouth with a washcloth, offering small amounts of food, drink or ice as desired by your loved one, providing a light massage, reading to your loved one or playing soft favorite music. If distressed – please call.  

3. Hurting or groans/grunts/moans or furrowing of the brows?

 PAIN

Pain will be present and can become one of the most challenging complaints to control. It is usually untreated or undertreated by those (physicians, family members or even the patient) who are afraid of “addictions.” Palliative care physicians believe that addiction should never be an issue in a patient with a terminal illness. When pain is treated appropriately, addiction is rare. A delay in responding to pain makes it more difficult to control. Morphine is one of the drugs most commonly used in pain control. In addition to controlling pain, it relieves anxiety. Sometimes large doses may be needed to achieve adequate pain control and another drug/drugs may be used for ‘breakthrough pain”(that is, pain that occurs between the morning and evening doses of pain medication)

• Give pain medication regularly as prescribed. (Try not to skip doses)

• Readily give other recommended drug for breakthrough pain.

Keep a log book of time pain medications are given and time pain recurred so that I can easily make adjustments in the medication.

Encourage your loved one to talk about the pain. Where is it? How bad is it? How long after medication did it start? What made it better? Or worse?

If pain pattern suddenly changes or is worsening, please call.

NAUSEA/VOMITING
Unavoidable at times.  May get worse as your loved one takes in less food. We may have to eliminate unnecessary drugs that may be contributing to it.

• Cool washcloth to forehead.

• Wipe mouth frequently.

• Cook foods without strong odors.

• Report multiple episodes.

Quite common since many medications can cause it. Constipation can also lead to nausea and vomiting.

• Encourage prune juice as a regular part of the diet.

• Watch carefully for the first signs of constipation and call.

Although you may notice your loved one breathing fast, as long as there is no complaint of difficult breathing or fevers then it is ok. Dyspnea may be caused by anxiety, fear or other disease processes affecting the lungs.

• If a tablet was recommended for this complaint, give now, wait an hour, if no improvement - call.

• Provide adequate air movement and as cool temperature as the patient with tolerate (fan?).

• Decrease stress by avoiding family/friend disagreements in front of patient.

• Decrease exertion by providing a bedside commode if possible.

• Provide distraction with reading, music, massages.

DELIRIUM

More often than not, delirium heralds the end of life and can be the most difficult time for you as a caregiver. Your loved one may appear fearful and may even be very agitated/restless in the bed.

Have someone with your loved one at the bedside at all times. Family members/friends/sitters rotate and sit with him/her. During periods of confusion, frequent gentle hugs and touching of hands and feet helps.

**Your loved one’s descriptions of being visited by other loved ones who have died before them is more of a hallucination (not delirium) that is sometimes comforting to him/her.

Do not hesitate to call if you are distressed.