It was 1991. Traveling between New York and Portland, 34-year-old Chris Gorham managed $100 million worth of bargaining power in women’s apparel for Nordstrom. An avid reader, fiercely independent and fashionably dressed, Chris’s childhood losses hastened feelings of mortality and motivated her to live each day as a gift. Now 50, Chris takes 14 pills a day to slow the progress of Alzheimer’s disease, a condition that affects an estimated 4.5 million Americans today.
The number of Americans with Alzheimer’s disease will continue to grow as aging baby boomers push that number to 11.3 to 16 million by 2050, according to the Alzheimer’s Association.
Chris was diagnosed seven years ago with Progressive Degenerative Neurological Brain Disorder, or early on-set Alzheimer’s. It is the only form of Alzheimer’s that is hereditary.
Jacob Gorham, Chris’s son from her first marriage, wanted to be tested while still in high school. He’ll have to wait until he’s 21, doctors said. “But what do you do with the information? It’s like, ‘I’m going to get this horrible disease that I watched my mom go through,’” said Mark Donham, Jacob’s stepfather. “It would have been a disaster for an 18 year-old.” Cousins from Chris’s side, nearly 30, are now being tested to see if they have the gene. “But do you really want to know at 30 if there is no cure?” Mark asked.
A cross-country courtship
Chris met Mark at a New York bar as they waited for separate friends. In the middle of a divorce, Chris, who’d lost her mother to Alzheimer’s while in her 20’s, found an instant connection with Mark, whose father had a stroke and died while he was a teen-ager.
After talking for hours and missing the friends they’d come to meet, they left together. Spending nights by the phone in a cross-country courtship of two years, the friendship matured into love. All the while, Chris researched Alzheimer’s as she watched her sister Debbie, afflicted with the disease, transition from a healthy to vegetative state. Debbie stayed in a nursing home unresponsive for four years before dying of pneumonia.
Chris, who is 20 years younger than most patients when they are diagnosed, follows the path of her mother and sister, who both passed away by 50. Their family history is entangled with the disease — stretching to distant relatives in Eastern Europe.
How it works
Think of the worst way to die. Between ages 30 to 65 for those with early on-set, the body is relatively healthy while the mind slips into darkness. People and events that have shaped life disappear like breath in winter. The satisfaction of work, books and food no longer exists. Painful testing begins for a disease with no cure — it is not a blissful existence. Eventually there is total dependence, the ability to communicate is lost, then, the body shuts down and victims die of a secondary illness.
When asked what her day is like, however, Chris automatically answers in a wavering voice, “It’s a normal day.” Mark points out her swift reply as a sign of the disconnection between perception and reality. “In truth, my wife would have traded (Alzheimer’s) for cancer in a heartbeat,” he said.
Of the seven levels of Alzheimer’s, Chris is now entering level four, the late confusional stage. It includes decreased recall of current or recent events, memory gaps in personal history, inability to handle complex tasks like finances and a withdrawal from challenging situations. She leaves in the middle of conversations and is losing her sense of place and time. Early on-set Alzheimer’s is a neurological disease that suffocates the brain with protein and is linked to three genes. If the patient has one of the genes, it’s very probable they will develop the disease before age 65.
In Chris’s case, the gene came from her grandfather who had 11 children and spread it to three — including her mother and sister. When Chris found out she inherited one of her mother’s genes, she quit her job and began researching for a cure. With Mark by her side, she would make trips to Indiana three times a year to get MRI’s, spinal taps and memory testing. “My wife is a hero,” Mark said.
Tracing Alzheimer’s in her family to Romania — her grandfather’s homeland — geneticists from Indiana University Medical Center studied blood and tissue samples from her distant relatives. They discovered a genetic mutation that causes early on-set Alzheimer’s, which is different from the late on-set that afflicts ages 60 and up. One pharmaceutical company, Eli Lilly, is developing a pill based on her family’s genetic makeup and is testing it on mice.
Healthy denial
A friend of Mark’s once said he was uniquely prepared to help Chris — his mother was a nurse and his father was paralyzed by a stroke. But in 2001, the Donhams suffered a new outbreak of tragedies, when they lost five relatives in two months. Mark’s mother and stepfather were killed in a car accident; Debbie passed away and then a cousin and an aunt. “Going through that process prepared us differently than other people,” Mark said.
Since then, Mark deals with Chris’s disease as someone caring for a severe burn — with care and patience. For most Alzheimer’s patients, losing the privilege to drive can be as mentally disrupting as the drugs and tests they undergo. “Driving was a big issue; it’s one of the most painful things to watch,” Mark said. “My wife got lost driving to a doctor’s appointment she’d been going to for 15 years.”
To lessen the effect the lack of independence had on Chris, the couple took cross-country trips. On a gleaming BMW motorcycle, Mark and Chris traveled from Oregon to New York and visited old friends for possibly a last time. They set up Web site with photos and drove from April to October with not much more than the clothes on their backs. They took trips to Alaska and Mt. Rushmore — a total of 26,000 miles. “We basically spent a tremendous amount of time together,” Mark said. And from their childhood trials, Chris and Mark — both devout Christians — learned that God is in control. “Do we wallow in our self-pity and cover up the pain with alcohol, drugs and affairs, what most people do?” Mark asked. “No, because if you look at the Bible, we are all sinners, so we don’t deserve the things we have, anyway.”
Living simply
Stability and routine are necessary to the well-being of an Alzheimer’s patient. By keeping a routine, patients can often remember things they might not have. Chris can become stubborn and frustrated in the evening and can become agitated, anxious, and even violent. Yet, Mark has learned to separate the person from the disease and understand her actions are not on purpose.
“Chris and I have a really tight connection,” he said. “But you are not dealing with the same person than you were three years ago. It’s not always as you want it to be, but you know, it’s life.”
Last April, Mark quit his successful job as a sales representative for Cenveo, a nationwide printing industry, to be with Chris full-time. He has read over 50 books on Alzheimer’s, so he’s learned the best ways to provide for his wife.
They walk three miles every day and go to Starbucks. Word games, puzzles and using the brain by reciting names from movies or memory may help to slow the disease’s progression. Mark makes simple dinners and has a rack of troublefree clothes pulled out for Chris to wear. He’s gotten rid of clutter and keeps the house spotless. And although they can’t talk about the latest TV show, much less news of the day, the couple still has fun. “We still laugh, if she’s having trouble with something, we just chuckle about it, turn around the outfit,” he said. “You can either laugh or cry. We’ve chosen to laugh.”
The reality
Mark reminds himself daily not to look too far ahead. “It’s only going to get a lot worse,” he said. For Jacob, watching his mother “return to infancy” caused immense trauma during his adolescence.
At 15, his nightmares of losing his mother were realized when Chris began showing signs of Alzheimer’s. “If I am the last person with the gene, I probably won’t have kids,” Jacob said. “If it’s possible to stop the disease with me, I will.” Chris’s father Bob, who is 80, worked while his wife, Ruth, had Alzheimer’s in the 1970s. He eventually sent Ruth to a nursing home while she was still in her mid-40’s. “I didn’t have the money to stay home like Mark,” he said. By the time he visited Debbie, after she had been diagnosed, she was already in a vegetative state.
Of all three, Chris’s death may be hardest on him. “I change things that I’m able to change and live with what I can’t,” Bob said, knowing his youngest may die before he does. “It’s definitely hard for it to happen to me three times.” When the stress and upkeep becomes overwhelming, Mark said he’ll, too, put Chris in a nursing home so he can focus on loving her. It’s a huge expense: on-site care can cost up to $6,000 every month. “For me, I’m married to her until one of us dies,” Mark said. “For me, it’s going to be staying strong, and staying focused on my commitment to my wife. It’s where my faith is going to come in.”
The burden for a caregiver can send them to an early grave, even before their patient. Mark noted that caregivers die 60 to 70 percent faster than the average person their age. He said the key to living with Alzheimer’s is making the most important decisions while the patient is still healthy, such as writing a will. And despite memories lost and the pain to come, Mark says there are times when Chris’s lack of recall offers moments of calm amid the storm. “When you’re losing short-term memory and you look at a sunset, there’s a vividness to it because it’s like you’ve seen it new,” he said. Chris can see one, turn away for 10 minutes and say, “You gotta look at this sunset, gosh that is an awesome sunset,’” Mark explained, smiling as he whispered his wife’s words. “And I’m thinking, ‘Yeah, I’ve seen it three times already.”
By ANDREW MINER
This article was published in the Lake Oswego Review in 2007.
Update:
Mark has been documenting his experiences during his time as a caretaker for Chris. He has made a number of videos that we will post as a series in effort to help caregivers around the world. Since this article was written, Chris has participated in numerous studies on early onset Alzheimer’s disease with the Layton Center at Oregon Health & Science University (OHSU). More articles will come describing her support for the research done at OHSU.
Unfortunately, the inevitable conclusion of early onset Alzheimer’s arrived for Chris. Christine Donham of Lake Oswego, Oregon passed away Jan. 31, 2011, of complications due to early onset Alzheimer’s disease. She was 54.
Carlos Barrios
Founder, Endear
The C. Rex and Ruth H. Layton Aging and Alzheimer’s Disease Center at Oregon Health & Science University (OHSU) is a comprehensive research, clinical care and education center directed toward identifying the causes of Alzheimer’s disease and related disorders. The Center is one of twenty-nine NIA (National Institute on Aging) Alzheimer’s disease centers in the United States and is the only one in Oregon. In order to provide a brighter future for families, the Center is dedicated to conducting innovative, forward thinking research and is recognized as one of the best venues for this work.
Please help continue Chris’s work with a donation to OHSU’s Layton center through the OHSU Foundation at this link:
https://www.ohsu.edu/foundation/giving/default.cfm?fcode=AGINGALZ&src=WEBENDEAR
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