Joan Lunden's Caregiving Journey

Sherri Snelling, our caregiving contributor, recently spoke to Joan Lunden about her role as a Sandwich Generation and long-distance caregiver for her mother. Sherri met Joan on the set of a special program Joan hosted, "Taking Care with Joan Lunden," where Joan interviewed Sherri as an expert on caring for an older loved one at home. Sherri turned the tables on Joan and interviewed her for this story. Joan has co-authored a new book on caregiving stories, Chicken Soup for the Caregiver's Soul, Family Caregivers, available March 13.

For 17 years throughout the 1980s and 1990s, she woke us all with "Good Morning America" as co-host of ABC-TV's national morning show. But, it was only seven years ago that Joan Lunden, the sunny, blonde, California-born and raised TV journalist, received her own wake-up call.

In her words, "it 100 percent shook me up." Her brother Jeff, who had long suffered from Type II diabetes, had passed away. Joan had been caregiving for both her ailing brother as well as her then 87-year-old mother, Gladyce. While her brother suffered the ravages of diabetes – blurred vision, headaches, operations on hands and feet –Gladyce showed signs of dementia and had several mini strokes over the years. For both their safety and Joan's peace of mind, she'd bought them a condominium in the Sacramento, California area, where they lived together.

Meanwhile, Joan lived across the country on the East Coast, where she was raising two sets of twins under the age of 10 with her second husband and playing "empty nest" mom to her three older daughters from her first marriage. In addition, she had not slowed down since leaving "Good Morning America" in 1997, traveling the country as a spokesperson on healthy living, authoring several books, and managing a growing business focused on healthy living. Joan was both a Sandwich Generation caregiver – caring for children and a parent simultaneously and thus, sandwiched between caregiving duties – and a long-distance caregiver. More than eight million caregivers care for a loved one long distance, whether they are two hours away or across the country as in Joan's case. This makes caregiving more difficult – you are not there every day to see the small things that can be warning signs that something is changing and your loved one needs more care.lthough she mourned her only brother's passing, it was not his death that rocked Joan's world. It was the realization that her mother's dementia was so much worse than even she knew. "My mom had 'sundowners,' a typical symptom of dementia and Alzheimer's where the person becomes irritated, irrational and sometimes violent as the sun is setting," explained Joan. She also showed signs of paranoia, especially after Joan moved her mother into an assisted-living facility.

"Mom was afraid to go downstairs and visit with the other residents; they frightened her and yet she could not tell us why." Joan soon realized that she had not been seeing her mother's real needs and issues. "It is easy to overlook things when you live far away from your loved one," says Joan. "They put on a happy face and they seem fine and you may see small things but you want them to be fine."

Alzheimer's and dementia, which affects more than five million Americans today, can be a sneaky disease. An older loved appears relatively healthy and fine physically but is suffering from dementia that can cause sudden mood shifts or other emotional problems, especially frightfulness and forgetfulness. It is only through the activities of daily living that one sees how critical proper care becomes and Joan had not seen this before.

After Gladyce suffered several falls, breaking her foot, her rib, then hitting her head and needing staples, did Joan realize a specialized -care facility would be necessary. The social worker at the hospital where Gladyce was treated for her falls put Joan in touch with a senior care facility advisor. The advisor assigned to Joan assessed Gladyce's needs and then took Joan and Gladyce on a tour of several facilities that she thought would work. They settled upon a small residential care facility with just six residents.

Joan was also faced after her brother's death with the task of going through all the financial paperwork for her mother. She could not access her mother's bank account, she could not find a Social Security card or driver's license, and she had nothing to go on except that she knew her mother's maiden name.

An elder-law attorney advised her to find her mother's birth and marriage certificates. That would be verification for the Social Security office to issue her mother a duplicate card since Joan could not find the original. In addition, Joan would have to have her mother authorize her as a co-signer on the bank account and grant her access to health insurance and other critical information that has privacy protection. Thank goodness in Joan's case, her mother was still lucid enough to authorize her daughter to help – in many caregiving situations the loved one can no longer provide that authorization and it becomes a costly and time-consuming burden for the caregiver to get this done.

"You think you know your parents but then something like this happens and you realize maybe you do not know as much as you should," says Joan. This is especially true when it omes to verifying records and making decisions on their behalf.

In retrospect, Joan says, "I wish I had the family meeting before the crisis in care happened, but I am typical. The crisis happened and all of a sudden you have to become an instant expert at so many issues around elder care."

Joan's advice to all caregivers, current and future, is to take a page from her long-running morning show career. "Have the conversation, start the dialogue, do the interview with your loved one," she says. "And, most importantly, don't stop communicating – talk to your loved one as often as possible, talk to their doctor, ask questions, talk to the facility administrators and health care professionals – stay on it . It is the most important tool you have – it keeps you connected to your loved one and to the essential care needs they have."

Joan recently celebrated her mom's 93rd birthday at her residential- care home, where her mother is known as "Glitzy Glady." For someone who is the poster "gal" for 60 being the new 40, Joan says she is healthier today than she has ever been in her life and that her caregiving experience has given her new insights into the message of "prepare for the worst and hope for the best."

Sherri Snelling, CEO and founder of the Caregiving Club, is a nationally recognized expert on America's 65 million family caregivers with special emphasis on how to help caregivers balance "self care" while caring for a loved one. She is the former chairman of the National Alliance for Caregiving and is currently writing a book about celebrities who have been caregivers. You can find more information at www.caregivingclub.com.