Committed to Assisting with Recovery
after Stroke
 

The concept of work includes all forms of productive activities whether or not they are reimbursed. Most of us work for more than a salary. It becomes a way of life. It not only provides us with the financial means to survive in the world, but also gives us an identity, a life role, from which we derive meaning and satisfaction. What happens, then, when one day a person is unexpectedly no longer able to work? This is the situation faced by many men and women who have had a brain attack, more commonly called a stroke. Stroke is the leading cause of disability among older adults with approximately 750,000 individuals experiencing physical, psychosocial, and cognitive disabilities each year. Over the last five years, 160 couples have participated in a randomized NIH-funded intervention study entitled CAReS (Committed to Assisting with Recovery after Stroke)

which has provided education, skill training, counseling, and social and community linkages to stroke survivors and their spouses by advanced practice nurses with the assistance of occupational and physical therapists. One of the outcomes that came to light was the impact of work loss following the stroke not only upon the stroke survivor, but also the spouse and family.

Twelve-month information is currently available on 102 of the 160 couples who enrolled in the program. Data were gathered regarding their occupation and work status prior to the stroke and through the first year following hospital discharge. Among the 102 couples, 50 stroke survivors were retired prior to their stroke. Of the 52 stroke survivors who were working prior to the stroke, only 7 had returned to work 12 months after the stroke. Stroke survivors who owned their own companies and professionals or managers were more likely to return to work, at least part time, than blue collar workers. Most spouses continued to work, although some took off time during the first few months that the stroke survivor was at home. A few spouses who were not working prior to their partner's stroke returned to work or increased their time at work to try to “make-up” for the lost income.

Based upon our findings, concern has been raised about the impact of work loss upon the financial and psychological status of the family. Stroke survivors and their spouses not only lost monthly income but also health care benefits. This occurred at a time when costs of medication and medical care were escalating for them. While most stroke survivors who were not retired applied for Social Security Disability, many found this to be a difficult process with rejections and appeals and some, particularly minorities, were denied Social Security Disability due to lack of consecutive quarters of Social Security paid benefits. Many were too young for Medicare coverage and have had to seek other county/federal subsidy programs, pending availability and meeting criteria. Once rehabilitation has ended and the stroke survivor has reached a plateau, the desire and need to return to some kind of productive activity, paid or non-paid, was strong, but the community resources were limited.

This study has significant public policy implications and raises many questions regarding our health care, social service, social security and vocational rehabilitation systems. Stroke survivors who were working prior to their stroke and were clearly disabled were repeatedly denied Social Security Disability and were forced to appeal the decision. While virtually all of them whose work history allowed them to qualify were eventually granted benefits, the delay, sometimes up to a year, caused significant family stress, financial hardship, and feelings of worthlessness among the stroke survivors. The loss of health care benefits associated with work at the time of greatest need put a tremendous strain on the families who were trying to obtain therapy after discharge, make visits to a variety of specialists, and pay for new and very expensive medications to prevent another stroke. Many spouses who were trying to care for their stroke survivors and still work felt that their jobs were in jeopardy if they took off time to be with them in the hospital or to accompany them to rehab or physician visits. As one caregiver said, “my employer is really tired of my personal melodrama.” In addition, stroke survivors who wanted to work found that there were few resources to assist – vocational rehabilitation services had waiting lists, and even volunteer positions were hard to find.

Houston 's first conference aimed at stroke survivors, families, and other caregivers is scheduled from 8:30 – 3:30 on April 1, 2006 at the United Way of the Texas Gulf Coast Building . The conference, “Surviving Stroke: The Journey Together,” will feature Dr. Judi Johnson, a stroke survivor talking about her journey to recovery. There will also be updates on stroke research, treatment and rehabilitation, and the premiere of a video filmed with CAReS participants discussing their challenges to regain their independence.

The University of Texas School of Nursing at Houston
Center on Aging

2006 - 2008

Mission:
Improving the Quality of Life for an Aging Society.
 

The COA Shares Knowledge
 

Presentations

• Rapp, M.P., Bergstrom, N., Padhye, N. “The contribution of the complexity of mobility and skin temperature to the risk of developing pressure ulcers in nursing facility residents.” 11/16/05, John A. Hartford Scholar’s Leadership Conference, Orlando, FL.

• Since September, the Ombudsman Program has done two in-service presentations, educating 116 nursing home workers, and 32 programs about Family Councils, reaching 424 family members, residents and care workers. The Family Council project shows participants how to work together to strive for good quality care.

• Rapp, M. P., Padhye, N.S., & Bergstrom, N. (2006). Relationship of pressure ulcers to entropy of skin temperature. Poster presented at the 23rd Annual Houston Conference on Biomedical Engineering Research, Houston, Texas.

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Director's Corner
 

The Center on Aging begins the New Year with gratitude for three reasons. First, The Isla Carroll Turner Friendship Trust provided a generous donation for operating expenses for senior services, that will enable us to support the education and communication of Director’s of Nursing (DON) in Harris County, support the attendance of stroke survivors and their caregivers at “Surviving Stroke: The Journey Together,” conduct a survey and plan strategies to assist nursing facilities faced with evacuations and to plan follow up activities related to the 2005 Valley Conference seeking to foster an Elder Friendly Houston. We are very grateful for the ongoing support of the Isla Carroll Turner Friendship Trust. Second, we are grateful for the people who are the driving force of the Center on Aging. On January 4, our Mission and Strategic Directions were reviewed, revised and renewed. We continue our Mission of “Improving the Quality of Life for an Aging Society.” We will report our successes throughout the year.
	Last, we reflect with gratitude on the life of Mr. Earl Loggins, the COA Community Advocate of the Year for 2005, who passed away in December following a brief illness. Dr. Vaunette Fay and I attended the funeral celebrating the life of service this distinguished gentleman lived. Poignant remembrances were offered by Congresswoman Sheila Jackson Lee, colleagues, community leaders and his great granddaughter. Mr. Loggins left a legacy of mentorship, advocacy and leadership. We are saddened by his passing but inspired by and grateful for his legacy.
~ Nancy Bergstrom, PhD, RN, FAAN

6901 Bertner, 6th Floor
Houston, TX 77030
www.uthcoa.org
Phone 713.500.9921