Before you begin caring for a loved one at home, it's a good idea to consult with the other members of the caregiving team-such as doctors, nurses, therapists, social workers, and family members-to identify and develop an effective strategy. This strategy is referred to as a care plan. Each family's situation is unique, and family members will need to work together to develop the best plan to deal with their unique situation. The plan should be flexible enough to meet the continually changing needs of the person who is being cared for. You may have to learn through trial and error what works best for you. Although it is not always possible to predict the exact course of an illness or how a person will recover, it is a good idea to discuss expectations and potential problems in advance with all members of the home healthcare team. This will help you to develop a support network and the best care plan possible. Consider the following when developing your care plan:
How long the illness is expected to last
How the person's condition might improve or worsen
Whether it is possible for the person to fully recover from his or her condition or illness
Whether rehabilitation therapies-such as physical, occupational, or speech therapy-will be needed to promote recovery and who will provide these services, if necessary
The specific medical emergencies that might occur and how these emergencies should be handled
Caregiving adjustments you will need to make, such as changes in a person's medication or need for therapy
Setting Priorities and Goals
The best time to begin planning the transition from hospital care to home caregiving is shortly after a person has been admitted to the hospital. This is a good opportunity for you to determine the needs of your loved one, create a care plan, identify potential caregivers, assign caregiving responsibilities, and address the needs of the caregiver. Typically, a hospital social worker, primary care nurse, or case manager will be available to guide you through this transition and help you plan strategies for successful home caregiving. This will allow you, once your loved one leaves the hospital, to concentrate on providing the best care possible for him or her.
You might find it helpful to create a log or journal about your care plan to keep track of new developments or changes in your loved one's needs. Consider the following questions when developing your care plan, tailoring your answers to your unique situation:
What types of care will your loved one require and what is the best way to provide them?
Will he or she require 24-hour care?
If you need to monitor health indicators such as blood pressure or blood glucose level, or administer and adjust medications, who will train you to perform these tasks? And whom can you contact for advice and assistance?
Who will be part of your caregiving team and what roles will they play? You may need the services of a variety of people, such as doctors, specialists, visiting nurses, therapists, and home health aides.
What type of care is available, and from which agencies? Is the care effective and dependable, and what are the costs?
Will you need any special equipment, such as that used to provide oxygen or intravenous feeding? Find out what equipment you need, who will train you to operate it, what type of maintenance it requires, and who will provide maintenance for it.
Will physical changes have to be made to the person's home to enhance his or her mobility and safety? For example, you may need to have ramps, railings, or electric lift chairs installed on stairways. Grab bars and handrails help make it safer to use the toilet or bathtub.
Will the person need specialized equipment to help him or her perform daily tasks? Various useful devices, such as a handheld "reacher" that can help a person grasp objects that are out of reach, are available from drugstores and medical supply companies.
Will pets in the home create any special problems? Experts acknowledge that pets are often regarded as family members, but some pet-related routines and behaviors may need to be adjusted to prevent accidents. For example, you might install a child safety gate to keep a dog from getting in the way of a person who is learning to use a walker.
What are the person's likely transportation needs? You may be able to use your own car or van or you may need to use a specially equipped van. Transportation services are available at reasonable cost in many communities; ask your doctor or nurse for recommendations or check your phone book.
In most families who are caring for a loved one, a spouse, parents, siblings, or children provide most of the routine care, with assistance from various healthcare professionals and under the supervision of a doctor. Do not worry if you have had no practical experience as a caregiver. Caregiving requires common sense and a caring approach that most people are able to provide, and any basic caregiving skills that you do not have already will be easy to learn. Caregivers rarely need special skills, but if you do, you can be trained to perform even difficult tasks effectively. People who have experienced firsthand the challenges and rewards of home caregiving emphasize self-education as the key to providing quality care. Learn as much as you can about your loved one's illness or condition:
Attend discussions with physicians and other members of your loved one's healthcare team. Write down questions and take notes or tape-record sessions with care instructors. Learning how to handle a serious illness or injury requires taking in a lot of new information that you may not easily understand or remember. If you feel your questions are not being addressed in these meetings, schedule a separate meeting to resolve them.
Consider consulting a private clinical social worker, gerontologist (aging specialist), or other appropriate care provider. These people are trained to navigate the complex healthcare delivery system. They can come into your home, evaluate your family's needs, and help you get the support you need, such as a physical therapist, a household helper, or even a hospital bed. They may also be able to help you make a decision about a nursing home in your community that meets your loved one's needs.
Use the services offered by local and national support groups and organizations, community outreach programs at nearby hospitals and other healthcare facilities, and help hot lines. Consult your local public library, bookstores, and the Internet for additional information and resources.
The basic goal of caregiving is to keep your loved one as clean, comfortable, and content as possible. Keep in mind that when a person is seriously ill, even the smallest problems may be upsetting and can seem overwhelming. By keeping things running smoothly, you enable your loved one to rest and remain optimistic.
Planning and Arranging the Room
When planning your loved one's room, consider how ill he or she is and how long you are likely to be caring for him or her. Arrange the room to make it as comfortable and convenient as possible for both the person who is being cared for and his or her caregivers. Here are some helpful tips:
In a two-story house, it is probably better for a person to stay on the first floor. This will help keep him or her from feeling isolated and will eliminate a lot of trips up and down the stairs for you. This arrangement will also help prevent potentially serious falls.
Place a single bed in the room so that it is accessible from both sides; making the bed and moving the person in bed will be easier. If possible, place the bed near a window so the person can see outside and feel more connected to the rest of the world. If you need a hospital bed with side rails, you can rent one from a medical supply company.
Use a bedside table to keep medications, water, tissues, a whistle or bell (to call for assistance), and any other important items within easy reach.
If the person can get out of bed but cannot get to the bathroom easily, you will need a commode (a portable chair that contains a removable bedpan). You can rent or buy one from a drugstore or medical supply company or, in some communities, borrow one from a local health agency or volunteer organization. If the person is confined to bed, keep a bedpan (and a handheld urinal for a male) near the bed at all times.
Be sure that the temperature in the room is comfortable and the air circulation is adequate. You may want to leave a window open slightly to bring in fresh air or use a small fan to keep the air moving, but be careful to keep the room free of drafts.
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Excerpted from American Medical Association Guide to Home Caregiving Excerpted by permission.
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