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Basics of Home Care for Patients With Moderate Ability

By Barbara Barbero, M.A., R.N.

This introductory article provides you with some basic, practical information about giving care at home to a person with cancer (or other serious illness) who is able to be up and about (ambulatory) and feeling reasonably well for at least a portion of each day. For help in caring for a loved one when that person becomes more ill or is disabled by treatment side effects, we recommend you read Caring for the Patient With Limited Mobility.

Getting Off to a Good Start

When you are first faced with caring for a loved one with cancer or other serious illness, a good place to begin is to openly discuss with that person just what he needs to do each day in order to care for himself appropriately. Then agree upon what you can do that would be most helpful to him, under what circumstances and at what times he would like your assistance.

Building trust by mutually discovering and respecting the needs, abilities and limitations of each of you will prevent many future problems as the need for care either increases or decreases. It is very important for the primary caregiver (and others) to support the person with cancer in maintaining as much independence as possible. This may mean giving encouragement or it may mean getting out of the way. Although it may sometimes be tempting, you should not try to force your opinions or needs onto your loved one. Anyone with cancer, or any other serious illness, has a right to define his own needs and to make his own mistakes (within reason). There may be times when neither one of you is certain how to proceed and these times need careful thought and open communication in order to find answers that work for both of you.

The more each person involved in giving and receiving care can honestly identify their own strengths and weaknesses, as well as their inability to individually solve every problem alone, the more a team effort will result and there is a greater likelihood of achieving general good care and satisfactory results.

Paying Attention to Your Own Needs

Providing care at home can be difficult, tiring, and even downright exhausting. Under some circumstances, caregivers have been known to require medical care, hospitalization and even to die in the process of providing care to a very ill or dying person. This is especially true when the caregiver is elderly or has medical problems. This is not meant to frighten you, but to help you develop a realistic perspective about your limitations and to recognize our own need for self-care and support from others.

In putting energy toward caring for your loved one, you may forget to take adequate care of yourself. Like your loved one, however, you will need assistance and support in order to stay physically and emotionally healthy. She cannot be expected to help you to meet these needs, so you will have to discover how to obtain your own support. Even if you have not been able to do so in the past, you can learn to accept all the helpful assistance that is offered and to ask for more support whenever you need it from family, friends, neighbors and local organizations.

Serious illness changes the lives not only of those who have the disease, but also those who love and care for them. You will need to be as loving and caring toward yourself as you are toward your loved one and, if you learn how to do this, the skill will be a gift to you for the rest of your life.

How You Can Assist Your Loved One

There are many ways in which you can help relieve the person who has cancer of some responsibilities and at the same time encourage her to keep up with, as much as possible, the normal activities of life. Here are some of the things you can do:

Helping With Medical Treatments

Obviously, all medical treatments ordered by the doctor need to be carried out as carefully and as exactly as possible. Yet under stress it can be difficult for anyone to remember them all and to keep track of multiple things that need to be done. Therefore, it can be very helpful if you accompany her to doctor's visits and even tape record instructions. You can help her by writing down all the doctor's instructions, including the times and dosages of each medication, including special instructions, such as whether she needs to take certain ones with or without food or other drugs. Making certain that the calendar has correct dates and time for medical appointments is also helpful.

Taking Over Some Jobs Your Loved One Used to Do

A difficult struggle for people with serous illness, especially as the disease progresses, is their need to shift from a life of independence to one in which they have to depend a great deal on others. With sensitivity in discussing how some roles and responsibilities may need to change, however, you can offer to assist with errands, sorting mail, paying bills, preparing meals, answering phone calls, and doing yard or housework. Because treatment can be very tiring and your loved one may experience difficult side effects, it can be extremely helpful if you arrange transportation for appointments and treatments.

Lending an Empathetic Ear

In addition to the need for discussion of what jobs and responsibilities you and he will handle, it is important to encourage him to talk about fears and other feelings that having illness usually arouses. Do not, however, insist that he speak before he is ready or if he chooses not to. Rather, let him know that you are interested in his concerns and willing to really listen to them whenever he might wish to talk. Listening without offering advice, unless it is requested, can be a great gift to both of you.

You can remain more calm and supportive if you realize that no one except your loved one can really know what he or she is experiencing or needing at any given moment. Needs and moods can easily change from day to day. Being flexible, therefore, helps keep the lines of communication open.

If you are not the primary caregiver, but rather a family member or friend of the caregiver, you can help by giving the caregiver the same kinds of support he is giving to the patient.

Pacing Yourself

Developing schedules that include planned rest periods can be very beneficial to both of you. Energy conservation is critical for anyone who is ill—and for all those who take on the extra work of providing care. You will find that the prior demands of her life and yours have not stopped just because cancer has been diagnosed and treated.

© Copyright 1997, CancerOnline, Revised 2002, Arlene F. Harder, MA, MFT