by Carol Levine, Director Families and Health Care Project, United Hospital FundI am writing this on the 19th anniversary of the accident that left my husband Howard with severe brain damage and quadriplegia and turned me into a Well Spouse. There were many bad days during the 17 years until his death on January 1, 2007, but one of the worst came five months after the accident. Still slowly emerging from a coma, Howard was transferred from an acute care hospital to a rehabilitation center.
Leaving acute care where everything and everyone had become familiar and where I was treated as a wife, I entered the world of rehab, where I became a caregiver. In this boot camp for caregivers, I was told "Brain injury patients act crazy. Get used to it." "Get these soiled sweat pants out of here. Laundry is your job."
Anyone who has accompanied a spouse on the bumpy road from admission to discharge from a hospital, rehab unit, or home care agency services knows how chaotic this experience can be. Nothing can make transitions stress-free, but understanding what is likely to happen can help bypass the most common barriers. With my colleagues at the United Hospital Fund, and a stellar group of consultants, I have spent the past few years working on a campaign called Next Step in Care. We want to help health care providers and family caregivers work together to make transitions smoother and safer. The materials we developed are available at
www.nextstepincare.org.
All the caregiver guides and checklists are available in English and Spanish, and are free and downloadable. Written in straightforward language, they are task-oriented and practical. For example, the guide on HIPAA (the Health Information Portability and Accountability Act) states that the law does not prevent health care providers from giving relevant information to family caregivers, nor does it require a written release. Individual facilities, however, can set their rules requiring written releases. The medication management guide outlines some common problems family caregivers encounter and includes a simple, handy form to fill in and update to keep track of medication changes.
One of the most important guides is called "What Do I Need as a Family Caregiver?" It lists many tasks commonly required after a hospital or rehab stay and recommends that the family caregiver consider as honestly as possible his or her abilities and limitations. The caregiver can check one of three responses: I am able to help WITHOUT training, I am able to help WITH training, and I am unable to help.
Also on the website are sections defining common terms, links and resources, and news about Next Step in Care and transitions in general. We are working on adding guides on the transition from short-term rehab to long-term placement, and from acute care to palliative care and hospice.
Launching the Next Step in Care website is the start of a dialogue with family caregivers and providers. I'd like to know what you think about the website, what we might add, and ways to help well spouses make the best use of it. Please send your suggestions to me, Carol Levine, Director of the Families and Health Care Project at the United Hospital Fund, NYC, NY at
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Thank you.
