Going home after a stroke: A guide for care

Adjusting to the change is made easier

(Editor's note: A Spanish-language version of this story is included in this issue for Spanish-speaking patients.)

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 duties that fall too heavily on one person can be very stressful. Even when family members and friends are nearby and willing to help, conflicts over tasks can cause stress.

A stroke is always stressful for the family, but it is especially hard if one family member is the only caregiver. Plenty of 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. 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 also is 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.

Information about stroke

A good place to start is with the books and pamphlets available from national organizations that provide information on this subject. Many of their materials are available free of charge. Look into local stroke clubs or other support groups. These are groups where stroke survivors and family members can share their experiences, help each other solve problems, and expand their social lives.

Home health services are available from the Visiting Nurses Association, public health departments, hospital home care departments, and private home health agencies. Services may include nursing care, rehabilitation therapies, personal care (for example, help with bathing or dressing), respite care (staying with the stroke survivor so that the caregiver can take a vacation or short break), homemaker services, and other kinds of help.

Other sources of help

— Meals on Wheels delivers hot meals to the homes of people who cannot easily shop and cook.

— Adult day care is available for people who cannot be completely independent. There they get meals, participate in social activities, and may also get some health care and rehabilitation services.

— Friendly Visitor (or other companion services) offers a paid or volunteer companion to make regular visits or phone calls to a person with disabilities.

— Transportation services: Most public transportation systems have buses that a person in a wheelchair can board. Some organizations and communities provide vans to take wheelchair users and others on errands such as shopping or doctor’s visits.

Many communities have service organizations that can help. Some free services may be available or fees may be on a "sliding scale" based on income. It takes some work to find out what services and payment arrangements are available. A good way to start is to ask the social workers in the hospital or rehabilitation program where the stroke survivor was treated. Also, talk to the local United Way or places of worship. Another good place to look is the Yellow Pages of the telephone book, under "Health Services," "Home Health Care," "Senior Citizen Services," or "Social Service Organizations." Just asking friends and neighbors may turn up useful information. The more you ask, the more you will learn.

Source: Agency for Healthcare Research and Quality, Rockville, MD.