When Celebrities Face Alzheimer's: Advice for Caregivers From 6 Who've Been ThereBy , Caring.com contributing editor
If there's one thing that can make most of us feel slightly less alone when a relative or friend has Alzheimer's disease, it's realizing that Alzheimer's and other forms of dementia strike all families -- even those in the most glamorous corners of our world.
A rash of celebrities have been facing the disease in their loved ones "“ parents, partners, friends "“ and a public soapbox can help draw attention to Alzheimer's. But I'm sharing their comments because sometimes a high-profile reminder about What Works sticks with us longer.
First Lady Laura Bush
Care situation: Moved mother into a retirement home five years ago; dad died of Alzheimer's.
"There are things you can do as a long-distance caregiver. One thing: You can build a support group in your parents' neighborhood, get to know all the neighbors, exchange phone numbers."
Interesting aside: While living in Washington DC, Bush traveled regularly to Texas to help arrange her parents' care. Being in one of the world's most high profile lives didn't spare her the need to establish eyes, hears, and hands on the ground miles away "“- a great way to help prolong a parent's independent living.
Care situation: Father Sargent Shriver has advanced Alzheimer's; mother Eunice Kennedy had a stroke the same year he was diagnosed, 2003.
"My kids dealt with the person that was sitting in front of them. Like, 'What are you doing, Grandpa?' And, 'What are you doing today?' And they didn't get into who my father was. They just got into who he was [at the moment]. And I think that was a very valuable lesson to me: Accept the person that's sitting in front of you. Stop trying to make them who they were. Let it go."
Interesting aside: The California first lady, who wrote the children's book "What's Wrong With Grandpa?" and helped produced the HBO documentary series "The Alzheimer's Project," says she still cries that her father no longer recognizes her. At 93, he attends Mass daily and still can recite the Hail Mary, though he doesn't know his own daughter Maria.
First Lady Nancy Reagan
Care situation: Cared for her husband, President Ronald Reagan, at home for a decade until his death with Alzheimer's in 2004.
"When it comes right down to it, you're in it alone. Each day is different, and you get up, put one foot in front of the other, and go"”and love; just love."
Interesting aside: When asked if she ever felt like giving up while caregiving, she told Vanity Fair (in an interview coming in the July 2009 issue), "No, Ronnie wouldn't like that."
John Rhys-Davies (Gimli in "The Lord of the Rings")
Care situation: Wife was diagnosed with Alzheimer's in 1995
"Before she got very ill, she asked me, "˜What will happen?' and I said she would probably forget who we all were. Obviously, she thought that was terrible so I told her no matter what happened we would always know who she was, we would always love her and always care for her."
Interesting aside: Rhys-Davies, 62, has a new life, and a 3-year-old, with another woman but says he will never divorce his wife, 76, because of his promise to look after her.
Care situation: Mother recently died of Alzheimer's, as had her grandmother; Gibbons founded Leeza's Place to support Alzheimer's caregivers and has written a new book, Take Your Oxygen First.
"Family caregivers are like first responders. When there's a burning building or a car crash, everyone is running from the scene, but the first responders are running towards the emergency. "Take your oxygen first" is really a battle cry, it's a mantra, it's a reminder that if you don't nourish yourself mind, body, soul, and spirit, we will be so depleted we will have nothing to give our loved ones"¦it's an incredible sign of personal strength to take your oxygen first."
Interesting aside: Noting how caregivers often cope with stress through crutches (such as overeating or drinking), Gibbons says she coped by traveling the world to find a cure for Alzheimer's "“ though she wishes she had come to terms with the challenges at home sooner instead.
Care situation: Plays a man with Alzheimer's in his new movie "Is Anybody There?"; his best friend died of the disease.
"I just hope it teaches people that there's so much to be learned from older people."
Interesting aside: Caine, 76, has grown vigilant about his own health as he ages. He cut salt and sugar from his diet years ago ("that's what living in California for 8 years does") and has said he now tries to avoid dairy and wheat, too. (What's left?!) For exercise, he walks five miles a day.