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Going Home from the Hospital
Ernest H. Rosenbaum, MD, Irene Harrison, LCSW, Joan Keane, BSN, Barbara Penney, PHN, MS, and Harold Brownstein, MD

Your Physical Environment
Supportive Home Care
Attention Caregivers

You are about to go home. You may be scared, but eager to leave the hospital to go home with your family, sleep in your own bed, eat home-cooked food, and resume your routine. Your family is happy that you are coming home, but they also worry whether they can provide proper care for you. Going home from the hospital is an emotional experience. The warmth and convenience of home are certainly more inviting than the hospital and its routine; but when physicians feel that their patients are ready to return home, many families still feel unprepared and uncertain about the their ability to deal with the problems of caring for the patient away from the support of the hospital and its staff.

Most patients, if given a choice would prefer to be at home. But fear of the unknown and the uncertainty of coping without the professional support of the hospital can deter patients and/or families from even trying to go home. Economics may also be a factor.

Working out a plan for home care can seem complicated and overwhelming: you may become discouraged before you really know much about it. Planning ahead can improve the quality of life at home, reduce fear, and enhance the confidence of families, friends, and patients. Those who are most involved in their hospital plan of care will make the easiest transition to home care.

One of the first steps toward this goal is a careful look at your home environment by the hospital discharge planner, family caregiver or Professional Geriatric Care Manager.

A home visit before discharge can help anticipate problems and needs before the arrival home; on the other hand, a visit a few days after discharge may be helpful in reassessing needs after the patient and family have had a chance to adapt to the new home routines.

Supportive Home Care
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Each person needs a different type and amount of care, and once your special needs have been clarified, it will be time to consider, realistically, the energy and time available from your family and friends. If family are the chief caregivers, their employment, health and other responsibilities must be considered. If there is more than one family member, a schedule to rotate responsibilities can be worked out. If only one person is the main caregiver, he or she must be allotted some free time for physical and mental well-being.

Infants and growing children, teenagers, mates and parents may make competing demands on the family helpers, and so the psychological strengths of both the patient and the family helpers must be considered.

Often sexual problems may arise, because of fear, anxiety and poor understanding of the needs of one's mate, or because of physical exhaustion from the illness. Many cancers require surgical changes such as a mastectomy or colostomy which can influence a person's sexual self-image. Special psychological counseling may be necessary to help improve both sexual adjustment and coping with the stress of daily living.

Your Physical Environment
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How well can your family adapt to every-day tasks like giving medication or injections, using an oxygen machine, tending to bedpans or urinals, caring for skin and mouth and throat problems, controlling nausea and vomiting, and seeing to your particular nutrition needs? How willing are they to learn?

How well equipped is your home? Do you need a hospital bed, urinal, bedpan, walker, or other safety devices? Most of the equipment you use in the hospital can be provided at home. The hospital discharge planner can help you decide what equipment you will need. She or he will be concerned about the physical set-up of the bathroom, bedroom, the space available for extra furniture or equipment, and the location of stairs and railings. Most medical insurance policies will cover the equipment you are likely to need.

Here is a list of some of the commonly needed equipment which is generally available through local supply companies:

Hospital Beds
Manual, semi-electric, and full-electric beds; safety siderails; overhead trapeze bars with floor stand; overbed tables

Standard folding, standard folding with leg rests, folding with removable arms, full reclining with legs, and power wheelchairs

Walking Aids
Walkerette, and folding walkerettes; canadian crutches; canes; quad canes; crutches

Bathroom Safety Equipment
Bath benches; bath tub grab bars; transfer tub seats; toilet assist frames; elevated toilet seats; shower attachments

Patient Aids
Commode chair and mobile commode chairs; alternating pressure units; flotation pads, sheepskin pads, transfer lifts, portable oral suction machines, and respiratory equipment

Patient-Care Items
Foam cushion rings, bedpans, urinals, heel protectors, elbow protectors, incontinent pads, incontinent pants, sitz baths

Attention Caregivers
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The caregiver is the one who usually must deal with your many moods and sudden changes of behavior, and the altered status of the family members. Illness creates disruptions in the usual family routines, and may change individual roles and expectations. The breadwinner may now have to handle household tasks and care for children. Family members often feel left out in the discharge planning. They can experience profound upheavals in their lives, and their needs must be taken into account. Professional home care agencies and homemakers can help greatly and are often essential, but in most instances the primary caregiver in the home is a family member, who will be depended upon for much of the daily support.

Here are some points to remember:
- Illness touches off old thoughts, feelings and fears. Earlier experiences, even ones you've forgotten, affect your attitude now. Sometimes, it seems difficult to understand the connection between those past events and the present situation.

- You may have to assume new responsibilities, and at times you may feel angry and resentful about these new obligations.

- Everyone worries about the other's vulnerability. If fears about the future are not discussed openly, individual family members may feel isolated. The need to protect the other person from unpleasant information can become a burden. Try to speak openly about your concerns. Shared feelings are easier to handle.

- You have the right to information. Ask questions, even if they appear trivial. Attending discussion groups offered by hospitals or community agencies can provide information and mutual support.

- Remember to meet your own needs. Don't neglect your own medical care. Schedule time for your social and recreational activities. No one can be a giver 24 hours a day.

- Fear, guilt, and anger are all natural feelings but often difficult to admit. Especially common are fears associated with the uncertainty of the future. How long will this illness go on? What can I expect? Will I be able to manage? There are no definite answers to many of your questions. If you can adopt a philosophy of a day at a time, it helps.

- Usually, there is a lot of focus on eating. It often is an expression of wanting to do something to make the ill person feel better. Try not to feel guilty if it sometimes seems excessive. You need reassurance that you are taking good care of your family member, and providing pleasurable food can help you feel you are doing a good job.

- The restrictions of illness often elicit anger at those providing care in the family. Limitations on activities, changes in appearance, loss of physical control, on-going pain, and the like are all frustrating. They may require changes in sexual life, social activities, and maybe in life style.

- Meeting anger with anger is very natural, but it seldom helps. Straightforward discussion about facing the changes, and adapting to the limitations may be the best help, for both patient and caregiver. Family members can, in most cases, manage to care for a person at home, especially if they know and use available resources. There are usually support services to call on and ways to cope. It may take a lot of experimenting and frustration, but the rewards are worth it.

Special Note: Some of your hospital equipment is disposable, and you may be able to take it with you.

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