BOSTON — The Kelly home in suburban Boston feels as lively and chaotic as any home to three kids under the age of 13; it’s loud, and strewn with knapsacks, sports equipment and homework. It’s where you might find middle-aged parents struggling with the minor ailments of mid-life — diminished vision, some back problems — but not Alzheimer’s.
However, for the past year and a half, Dr. Ralph Kelly, the children’s father, has been battling the disease. He was diagnosed when he was just 59.
Ralph began to notice that something was wrong long before his diagnosis. He was a vice president at the biotech firm Genzyme Corp., and he started to find it increasingly difficult to get his work done. “It took me two to three times longer to write a report as it would have a couple of years earlier,” Ralph recalls. “People were talking behind my back, asking I guess, ‘What’s wrong with Ralph?’ ”
Soon the signs became more frequent — forgetfulness, confusion and frequently getting lost. “One day I was walking from my home and I walked a few blocks and turned around and had no idea where I was,” he says. “I became lost in an area where I had lived for 20 years.”
It was a tough reality for this former doctor with a prestigious career in medical research. But even with his medical expertise, Ralph had no clue he was in the early stages of Alzheimer’s.
Looking back, his wife, Ruth Fretts, who is also a doctor, says she was reluctant to consider that it might be Alzheimer’s. “It’s just scary,” she says. “You don’t want to think about it at all. There are these ‘OMG’ moments. You didn’t want it to be Alzheimer’s, but a lot of things were coming apart.”
‘It’s As If You Are Swimming In Glue’
Things finally came to a head in the spring of 2010, when Ralph was giving a company-wide presentation. He lost his train of thought and couldn’t get the words out. “It’s almost as if you are swimming in glue,” he says, “and you can barely hear the outside.” He still cringes as he recalls being laughed at, and feeling humiliated.
Ralph says shortly after that incident, he was told his job was being eliminated. The crisis led him to seek a medical evaluation. The diagnosis: Alzheimer’s. Ruth says hearing the word was devastating. “It felt as if someone had died,” she says. “It plunged me into complete grief.”
As horrible as the diagnosis was, another daunting task lay ahead: Ruth and Ralph had to explain to their then-young children that their dad had a debilitating and deadly disease. For advice, Ruth turned to Dr. Paula Rauch, director of Massachusetts General Hospital’s Parenting At A Challenging Time Program. Dr. Rauch advised Ruth to tell her children as soon as possible.
“Parents imagine not talking to their children is being protective, and what we learn from children is that they don’t feel protected, they feel excluded,” she explains. “Children hear their parents talking to other people, they have a sense that something is going on.”
So Ralph and Ruth sat down with their children to share the news that their dad had Alzheimer’s. Ruth was determined not to sugarcoat the truth, even when their eldest daughter Arden, who was 10, asked the tough questions about how long Ralph had left to live.
“I suppose I could have fudged that,” she says, “but I didn’t.” And neither did the kids. When Arden did the Alzheimer’s Walk, she posted on her website that her dad was dying.
Ruth assured the children that they were doing everything possible to help Ralph and she told them he would be taking part in an experimental drug trial that might help him.
Ralph is part of a drug trial at Brigham and Women’s Hospital’s Memory Disorders Unit in Boston, where he goes every month to be infused. But first he must undergo cognitive testing with neuropsychologist Dr. Dorene Rentz.
Dr. Rentz begins with a simple question: “Where did you last work?”
Ralph hesitates, stammers, and after an excruciating minute or so, he blurts out “Genzyme.” Then Dr. Rentz moves on to a problem-solving question.
“How many quarters are there are in $6.75?” This time, Ralph does not come up with the correct answer.
The cognitive testing is part of a double blind trial to test the drug Bapineuzumab. The drug appears to be effective in reducing the amount of amyloid plaques in the brain, which are believed to cause brain damage in Alzheimer’s patients.
But Dr. Rentz says even if the drug clears amyloid, patients may not see any benefit. “The whole thought now is that we’re treating too late in the disease process,” she says. “We can remove the plaque from the brain, but we may not be doing anything to reverse the actual disease.”
For Ralph the drug is his only hope. “I am beside myself because there is nothing, nothing out there besides Bapineuzumab,” he sighs. “I don’t have that much time.”
As Ruth looks after Ralph, her three children and her obstetrical practice, she has found support from those who best understand what she is going through — other spouses of Alzheimer’s victims.
At a support group in the Watertown offices of the Alzheimer’s Association, she shares concerns large and small. On a recent night, Ruth questions her decision to get another dog. She worries that it added more chaos to an already-chaotic home.
“I was thinking of Ralph, thinking that he would like the company,” she says. “There is something about dogs that make you live in the moment.”
The facilitator helps Ruth understand the value of a dog and reassures her. “Maybe I just have to get through the hump, you know?” Ruth says.
Staying In The Present
Ralph now spends most of his days at home with his family. “I miss the world of science and research,” he says, “but I have four to six years left and I have to make them as meaningful as they can be.”
He could have tried to work a bit longer, but chose instead to spend as much time as possible with his children. “When he was working he was not home a lot. It’s definitely better now,” Arden says. “He helps me with soccer and we watch a lot of science programs together.”
Ralph is in the relatively early stages of Alzheimer’s, where he has good days and bad. But further down the road the disease follows a terrible course. Beyond the memory loss, there is the inability to read or to recognize loved ones, and there are profound personality changes.
Ralph and Ruth say their challenge is to stay in the present, to create joy in their lives, and to create memories that will sustain.
“My initial thought was that this was going faster than I thought it would,” Ruth says. “But now we actually are holding steady and we will take it and make the very best of it. We will deal with what we have to deal with.”
She adds, smiling through her tears, “I still picked the right guy.”