May is National Stoke Awareness Month. Stroke is the 5th leading cause of death in the United States and one of the leading causes of adult onset of disability.
More specifically, strokes strike nearly 800.000 Americans each year – killing approximately 137,000 and forever altering the lives of those who survive and their families. There are an estimated 6.5 million stroke survivors living in the United States today, who have amazing support teams including an army of millions of family caregivers.
For those who survive a stroke after stabilization in a hospital, rehabilitation begins and family caregivers play a huge role in the rehabilitation process. Rehabilitation does not cure a stroke. Instead, it focuses on minimizing permanent damage and enhancing adaptation. Rehabilitation may include intensive retraining in a variety of areas including movement, balance, perception of space and body, bowel / bladder control, language, and new methods of psychological and emotional adaptation. Stroke rehabilitation programs consist of the coordinated efforts of many health professionals in collaboration with family caregivers, who can benefit from training to aid rehabilitation procedures.
Sometimes stroke survivors do not receive the services they need because they are not referred to or because insurers state that they do not cover the cost. Caregivers may need to ask a lot of questions and be assertive to get the help that they and their loved ones’ need. A hospital discharge planner should assist with referrals to rehabilitation centers. A social worker can also be useful in making special arrangements for long-term care and referrals to community resources.
Caring for someone with a stroke is challenging. Behavior, memory, communication and physical capabilities can all be impacted by stroke. When a loved one is first hospitalized immediately after a stroke, families usually step in to help supply information about the patient’s history and symptoms as well as advocate for and share patient care preferences.
As treatment progresses, a primary family caregiver, becomes involved in choosing a rehabilitation (rehab) facility, coordinating home care services, providing transportation, housekeeping and cooking, and communicating with physicians and rehab staff. As time goes on, family caregivers may also deal with their loved one’s understandable depression and fear, physical care needs, coordinating home care and physical therapy, facilitating communication if there is speech impairment, and providing mental and social stimulation both in the home and out in the community.
Family caregivers must not do everything alone. It is vital to find support in the local community. Rehabilitation for stroke survivors can be a long process with slow and sometimes unsteady progress. The process of recovery is not linear and can seem like one step forward, two steps backward at times.
During rehab and recovery, family caregivers can maintain their energy by focusing on their loved ones’ capabilities rather than limitations, and to show encouragement for every new gain or step of progress, no matter how small or large.
Providing care for a loved one who has survived a stroke can be intense. Primary caregivers must maintain focus on their own emotional and physical health and the ways any resulting stress may be affecting them. To help avoid caregiver burnout, primary caregivers should make an appointment with their own primary care physicians and share their new caregiving responsibilities.
In addition, primary caregivers are encouraged to seek personal coaching or counseling and respite support. It is important to take some breaks in caregiving by getting support from other family members, friends, or a hired professional care provider.
Taking deserved and needed short periods of respite, even for just a few hours, allows the primary caregiver to renew their energy for the tasks ahead. Getting caregiving support is necessary for the health and well-being of the caregiver and the loved one receiving support for the long-term.
There are a number of great resources to support caregiving families with loved ones who are recovering from a stroke. Here are a few…
National Stroke Association
9707 E Easter Lane
Centennial, CO 80112
The National Stroke Association provides education, information and referral, and research on stroke for families, health care professionals and others interested in or affected by stroke.
American Stroke Association
A division of the American Heart Association
7272 Greenville Avenue
Dallas, TX 75231
The American Stroke Association offers information and sponsors programs and support groups throughout the nation for stroke survivors and family members.
Agency for Healthcare Research and Quality
AHRQ Publications Clearinghouse
PO Box 8547
Silver Spring, MD 20907
Web address: http://www.ahrq.gov/
AHRQ’s free booklet, entitled “Recovering After a Stroke,” is designed to help stroke survivors and their families get the most out of post-stroke rehabilitation. It provides information about the possible effects of stroke as well as types of rehabilitation programs and how to get the most out of the program you choose. It includes resources for help and information. (Available in English and Spanish)
National Rehabilitation Information Center
4200 Forbes Boulevard, Suite 202
Lanham, MD 20706-4829
Email: naricinfo@ heitechservices.com
Web address: http://www.naric.com
Provides information about rehabilitation facilities, support groups, and disability organizations. Can conduct specialized literature searches.