Recovering After a Stroke:
A Patient and Family Guide

Consumer Guide Number 16 
AHCPR Publication No. 95-0664: May 1995
US Agency for HealthCare Research and Quality

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Discharge Planning

Discharge planning begins early during rehabilitation. It involves the patient, family, and rehabilitation staff. The purpose of discharge planning is to help maintain the benefits of rehabilitation after the patient has been discharged from the program. Patients are usually discharged from rehabilitation soon after their goals have been reached.

Some of the things discharge planning can include are to:

• Make sure that the stroke survivor has a safe place to live after discharge.
• Decide what care, assistance, or special equipment will be needed.
• Arrange for more rehabilitation services or for other services in the home (such as visits by a home health aide).
• Choose the health care provider who will monitor the person's health and medical needs.
• Determine the caregivers who will work as a partner with the patient to provide daily care and assistance at home, and teach them the skills they will need.
• Help the stroke survivor explore employment opportunities, volunteer activities, and driving a car (if able and interested).
• Discuss any sexual concerns the stroke survivor or husband/wife may have. Many people who have had strokes enjoy active sex lives.

Preparing a Living Place

Many stroke survivors can return to their own homes after rehabilitation. Others need to live in a place with professional staff such as a nursing home or assisted living facility. An assisted living facility can provide residential living with a full range of services and staff. The choice usually depends on the person's needs for care and whether caregivers are available in the home. The stroke survivor needs a living place that supports continuing recovery.

It is important to choose a living place that is safe. If the person needs a new place to live, a social worker can help find the best place.

During discharge planning, program staff will ask about the home and may also visit it. They may suggest changes to make it safer. These might include changing rooms around so that a stroke survivor can stay on one floor, moving scatter rugs or small pieces of furniture that could cause falls, and putting grab bars and seats in tubs and showers.

It is a good idea for the stroke survivor to go home for a trial visit before discharge. This will help identify problems that need to be discussed or corrected before the patient returns.

Deciding About Special Equipment

Even after rehabilitation, some stroke survivors have trouble walking, balancing, or performing certain activities of daily living. Special equipment can sometimes help. Here are some examples:

Cane.
Many people who have had strokes use a cane when walking. For people with balancing problems, special canes with three or four "feet" are available.

Walker.
A walker provides more support than a cane. Several designs are available for people who can only use one hand and for different problems with walking or balance.

Ankle-foot orthotic devices (braces).
Braces help a person to walk by keeping the ankle and foot in the correct position and providing support for the knee.

Wheelchair.
Some people will need a wheelchair. Wheelchairs come in many different designs. They can be customized to fit the user's needs and abilities. Find out which features are most important for the stroke survivor.

Aids for bathing, dressing, and eating.
Some of these are safety devices such as grab bars and nonskid tub and floor mats. Others make it easier to do things with one hand. Examples are velcro fasteners on clothes and placemats that won't slide on the table.

Communication aids.
These range from small computers to homemade communication boards. The stroke survivor, family, and rehabilitation program staff should decide together what special equipment is needed. Program staff can help in making the best choices. Medicare or health insurance will often help pay for the equipment.

Preparing Caregivers

Caregivers who help stroke survivors at home are usually family members such as a husband or wife or an adult son or daughter. They may also be friends or even professional home health aides. Usually, one person is the main caregiver, while others help from time to time. An important part of discharge planning is to make sure that caregivers understand the safety, physical, and emotional needs of the stroke survivor, and that they will be available to provide needed care.

Since every stroke is different, people have different needs for help from caregivers. Here are some of the things caregivers may do:

• Keep notes on discharge plans and instructions and ask about anything that is not clear.
• Help to make sure that the stroke survivor takes all prescribed medicines and follows suggestions from program staff about diet, exercise, rest, and other health practices.
• Encourage and help the person to practice skills learned in rehabilitation.
• Help the person solve problems and discover new ways to do things.
• Help the person with activities performed before the stroke. These could include using tools, buttoning a shirt, household tasks, and leisure or social activities.
• Help with personal care, if the person cannot manage alone.
• Help with communication, if the person has speech problems. Include the stroke survivor in conversations even when the person cannot actively participate.
• Arrange for needed community services.
• Stand up for the rights of the stroke survivor.

If you expect to be a caregiver, think carefully about this role ahead of time. Are you prepared to work with the patient on stroke recovery? Talk it over with other people who will share the caregiving job with you. What are the stroke survivor's needs? Who can best help meet each of them? Who will be the main caregiver? Does caregiving need to be scheduled around the caregivers' jobs or other activities? There is time during discharge planning to talk with program staff about caregiving and to develop a workable plan.

Going Home

Adjusting to the Change

Going home to the old home or a new one is a big adjustment. For the stroke survivor, it may be hard to transfer the skills learned during rehabilitation to a new location. Also, more problems caused by the stroke may appear as the person tries to go back to old activities. During this time, the stroke survivor and family learn how the stroke will affect daily life and can make the necessary adjustments.

These adjustments are a physical and emotional challenge for the main caregiver as well as the stroke survivor. The caregiver has many new responsibilities and may not have time for some favorite activities. The caregiver needs support, understanding, and some time to rest. Caregiving that falls too heavily on one person can be very stressful. Even when family members and friends are nearby and willing to help, conflicts over caregiving can cause stress.

A stroke is always stressful for the family, but it is especially hard if one family member is the only caregiver. Much time may be required to meet the needs of the stroke survivor. Therefore, the caregiver needs as much support as possible from others. Working together eases the stress on everyone.

Tips for Reducing Stress

The following tips for reducing stress are for both caregivers and stroke survivors.

• Take stroke recovery and caregiving one day at a time and be hopeful.
• Remember that adjusting to the effects of stroke takes time. Appreciate each small gain as you discover better ways of doing things.
• Caregiving is learned. Expect that knowledge and skills will grow with experience.
• Experiment. Until you find what works for you, try new ways of doing activities of daily living, communicating with each other, scheduling the day, and organizing your social life.
• Plan for "breaks" so that you are not together all the time. This is a good way for family and friends to help on occasion. You can also plan activities that get both of you out of the house.
• Ask family members and friends to help in specific ways and commit to certain times to help. This gives others a chance to help in useful ways.
• Read about the experiences of other people in similar situations. Your public library has life stories by people who have had a stroke as well as books for caregivers.
• Join or start a support group for stroke survivors or caregivers. You can work on problems together and develop new friendships.
• Be kind to each other. If you sometimes feel irritated, this is natural and you don't need to blame yourself. But don't "take it out" on the other person. It often helps to talk about these feelings with a friend, rehabilitation professional, or support group.
• Plan and enjoy new experiences and don't look back. Avoid comparing life as it is now with how it was before the stroke.

Follow-up Appointments

After a stroke survivor returns to the community, regular follow-up appointments are usually scheduled with the doctor and sometimes with rehabilitation professionals. The purpose of follow-up is to check on the stroke survivor's medical condition and ability to use the skills learned in rehabilitation. It is also important to check on how well the stroke survivor and family are adjusting. The stroke survivor and caregiver can be prepared for these visits with a list of questions or concerns.

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