When Karen Morris became the primary caregiver for her mother a decade ago, she knew more than most people about what to do. The registered nurse assembled information and contacts related to her mother's Alzheimer's disease as well as her finances, living situation and other personal needs.
Morris now volunteers to help educate caregivers on coping with Alzheimer's.
"People didn't know where to start," said Morris, 59, of Charlotte.
To close this knowledge gap, AARP has created a free Prepare to Care planning guide. It contains a series of checklists to help people assess the needs and wishes of their loved ones and compile the information and contacts necessary to manage their affairs.
The Prepare to Care planning guide is available to download. To request a hard copy, e-mail AARP North Carolina at firstname.lastname@example.org or call 1-866-389-5650 toll free.
"It's a good tool," Morris said. "The number one thing is to compile everything" and have it in one place.
Morris said it is important to get power of attorney as early as possible, especially for a loved one with Alzheimer's. "Do not wait," she cautioned, because mental faculties can deteriorate quickly.
Another caregiver, Marilyn Morenz, 57, could have used the checklists when she became the long-distance caregiver for her mother in 2005. Her father was living in a nursing home when her mother was diagnosed with cancer. Morenz, who lives in Charlotte, handled health care and other needs for her mother in Wilton, Conn.
"It was overwhelming, and having everything written down in one place would have been awesome and saved many headaches," said Morenz.
"After she died, I went to her house and had to go through her papers to find important things like the title to her car, burial arrangements, house title," she said. "They were scattered in many different places … Had they been all in one place with an explanation from her, I know it would have helped so much."
Morenz and Morris are among the 44 million people nationwide acting as caregivers for adults. In North Carolina, one of every four adults provides regular care for someone 60 or older.
AARP North Carolina has been a leader in educating the public about caregiving. It was one of four states (also New York, Oregon and Wisconsin) chosen for a grant from the AARP Foundation for a caregiving educational project. The Prepare to Care planning guide is a result of that work.
During the two-year pilot project, done jointly with the North Carolina Cooperative Extension, educational materials were developed and presenters were trained in how to educate people in the workplace about caregiving. The goal was to see whether the workplace was a good setting to present caregiving information; the answer was a resounding yes.
The Prepare to Care program continues to expand as AARP North Carolina reaches out to employers, employees and work organizations.
The checklists are "a trigger to many conversations that people need to have about everyday things in life that people might need help with," said Luci Bearon, an associate professor at North Carolina State University. During the pilot project, she was the point person for the cooperative extension, which has been active in aging issues through its family and consumer sciences program.
The planning guide has been well received, said Suzanne LaFollette-Black, AARP associate state director for community outreach. "Basically, it's a document to help you get all your documents in order before there is a crisis."
In addition, the AARP North Carolina home page has a link to more North Carolina Caregiver Resources.
Susan Shackelford is a freelance writer and editor based in Charlotte, N.C.