You have the title, you have the duties – but as someone caring for a loved one with Alzheimer’s, do you know how to make good decisions for both of you, how to ask for — and get — help from others and how to protect yourself from burnout?

More than 15 million Americans now take care of a spouse, parent or relative with Alzheimer’s. “Dr. Ruth’s Guide for the Alzheimer’s Caregiver: How to Care For Your Loved One Without Getting Overwhelmed” is full of practical tips to help those individuals build and sustain a positive, supportive environment for both themselves and their loved ones. 

“I know a lot about helping people,” Dr. Westheimer said with a merry laugh in a recent phone interview from her home in New York. Westheimer, 84, is the psychosexual therapist who helped pioneer the field of media psychology. She is an adjunct professor at New York University and also has taught at Columbia University, Princeton, Yale, West Point and the New York Academy of Medicine.  She is the author of 35 books, some with Pierre A. Lehu, who also collaborated on the new book. 

“Friends whose partners have Alzheimer’s encouraged me to write this book,” Westheimer said. “I wanted to touch on subject matter that no one has explored in depth. The golden years are tarnished by this disease. You expect frailty, a walker or a cane, maybe limited energy — but not such a horrible disease that is so hopeless.”

In the book, Westheimer addresses the “storm of negative emotions” and the physical and mental exhaustion that accompany care giving. She makes suggestions on how to motivate family members to help. She also offers tips on how to help children and grandchildren cope with a loved one’s disease. 

Most important, Westheimer emphasizes that caregivers must make time for themselves. “Somebody has to say that it is not selfish when you go to movie or have coffee or ask friends to come over,” she said.  

Because this is the same Dr. Ruth whose radio show “Sexually Speaking” started as a 15-minute taped program and later morphed into a one-hour show that aired live and because this is the same Dr. Ruth whose newspaper articles, videos, computer software and web site (see www.drruth.com) all deal with human sexuality, “Dr. Ruth’s Guide for the Alzheimer’s Caregiver” also tackles that subject. 

“The sex act is not the problem — memory is the problem. It’s very upsetting to be with someone who doesn’t recognize you, plus there is the uncertainty of whether that person recognized you half an hour ago or not,” Westheimer said. She added that sometimes people with Alzheimer’s exhibit a hyper-sexuality, even disrobing in front of others, and later can’t recall the incident. 

Another aspect of the disease, due entirely to memory loss, can be especially difficult for a spouse or partner. “Some people with Alzheimer’s find new partners, and the old partners are shoved aside,” Westheimer added. “That is so difficult. It’s not like being a widow or a widower. That’s final. You have your time of mourning and then you go on with your life. I know about that. I’ve been a widow for 14 years. But with Alzheimer’s, the mourning can be constant.” 

Individuals with Alzheimer’s also lose the capacity to read others’ emotions, Westheimer said. “One man I interviewed told me his wife never asked him how he was. He found that very difficult – here he was, doing everything for his wife, and she couldn’t relate to him on an emotional level anymore.”

In the book, Westheimer also discusses making the decision to put a loved one in a residential care setting, rather then continue to care for the person with Alzheimer’s at home. “Sometimes, a facility may be the best place, and caregivers should know not to feel guilty about it,” she said. “It’s a sad decision to make, but one that sometimes has to be made, perhaps with the help of a physician.”

Sometimes, emotional support from outside is also affected, when friendships change or even come apart for the caregiver, even if the person with Alzheimer’s is in a facility. Westheimer urges caregivers not to be angry. “Don’t waste your energy being angry and disappointed with people who can’t deal with it,” she said. “Your focus must remain on taking care of yourself.”

Westheimer’s hope is that every Alzheimer’s support group across the country will help caregivers learn to care for themselves as well as their loved ones. “These issues need to be raised, and I hope each group does that, she said. “This illness is not like when a person has an operation and then spends time in rehab or recovery. This is a sentence that pushes a caregiver’s endurance beyond anything imagined.”