Nurses called Rachel Desgrosseilliers at 1:30 in the morning when they couldn’t handle her husband anymore.
He’d been screaming her name in the trauma unit at Maine Medical Center for two-and-a-half hours. None of the other patients could sleep.
Nothing the staff said helped.
A fall down the stairs in his home after routine eye surgery had left Harvey Desgrosseilliers, a tall and athletic man, nearly blind, confused and paralyzed on his right side. In a matter of days, he didn’t remember his own children or how to tie his shoes.
She went to the hospital immediately after that call. Harvey was so relieved to hear her voice.
“Oh, Rachel, there you are! I’ve been looking all over for you. I’ve looked under every tree and under the house. I thought I lost you. I’m so tired, I must have walked 100 miles.”
They kissed and hugged, and he collapsed, exhausted by the long journey that had never taken him out of bed.
Since that April accident, she’s fought to keep her husband of 20 years out of a nursing home, to get the help he needs, to get his memory back. It’s completely upended the life of the couple that ran the Gooseberry Barn gift shop, the bright raspberry-colored landmark on Minot Avenue, for two decades.
Harvey’s slowly regained strength in his wobbly legs. His sense of humor has returned.
“How not to do barbering,” he teased recently, standing stock-still while his wife worked an electric razor against his cheek, trimming up sideburns. Every day she has to remind him where his socks go, how to work the TV remote.
It’s going to take years to recover from the brain injury. Harvey won’t get his eyesight back.
They’ll work through all that.
Seven months ago, Rachel worried that she had lost Harvey. But she never stopped looking.
One day at a time’
Rachel is the executive director of Museum L-A, a past member of the Maine Tourism Commission, a founder of L-A’s popular balloon festival and the former leader of St. Mary’s Regional Medical Center. Harvey, a skilled arborist, started his own tree service when Gooseberry closed. He loved being outdoors, once telling a reporter “trees almost talk to me.”
They moved to Minot four years ago, making a home in a sunny cape surrounded by woods with their shih tzu Mandy, a little mop who wears a bright orange vest whenever she goes outside this time of year.
Harvey lost most of the use of his left eye in a bad car accident in 1993. This spring, after back-to-back surgeries on his right eye to fix a cataract, he found himself bandaged up tight and being led around the house by Rachel.
She remembers clearly the night he fell, April 15. She’d fixed a nice dinner. Afterward, when he said he couldn’t see well enough in the shower to wash his hair, she hopped in. He was 69, she 60.
They laughed. When was the last time they’d showered together?
Before bed, she made sure he visited the bathroom. She didn’t want him waking up, forgetting he couldn’t see and stumbling.
“I had stuffed him in the bed (with pillows) to make sure he couldn’t get out of the bed without my knowing,” Rachel said. He asked her to sing a song and she did, a snippet from a the Elvis film “Blue Hawaii,” about love.
An hour after they’d gone to sleep, he got out of the bed without moving a pillow, without her feeling the shift of his weight. At the top of their second-floor stairs, something happened. He fell down 16 steps and hit his head, hard, on the metal door at the bottom.
He can’t tell her why he got up. Harvey doesn’t remember that day, or the next three months.
“I’ve imagined every scenario. I’ve asked why?'” Rachel said. “I’ve stopped. You drive yourself crazy.”
He went to Maine Med’s trauma unit immediately. The fall caused a severe brain injury, bleeding and a stroke.
For the first week, he seemed “with it,” Rachel said. “The more the pressure built, he totally changed.”
Her normally easy-going Harvey grew difficult. He flailed around in bed and always tried to get out, even though he couldn’t stand. He had waking hallucinations of being trapped in a fire. Firefighters could see him but couldn’t reach him. He was absolutely frantic.
Rachel stayed with him from morning to night for weeks. Sometimes nothing she said helped.
“I’ve been through a lot in my life. I’ve never been through anything so horrific,” Rachel said.
Stabilized, he eventually was moved to the New England Rehabilitation Center of Portland, where he stayed agitated and refused medicine. A consulting surgeon put a small port in his belly. A breathing tube inserted during surgery for the port broke his upper teeth. One by one, Harvey spit them out the next day.
“So many things were happening. I just had to say, Rachel, take it one day at a time.'”
More bad news, then coming back
Rachel says she found herself stuck after Harvey returned to Maine Med with an infection from his feeding tube. The rehab center didn’t want him back; he wasn’t making enough progress.
Another facility couldn’t accept people who needed to be restrained.
“There’s a very big lack of acute head injury care in the state of Maine. It’s pathetic really,” Rachel said. She refused to consider a nursing home, telling doctors, “I’m sorry, but you send him to a nursing home at 69 years old, right now, he’s going to be pegged as a senile old man. He’s going to become a vegetable if they don’t treat that head injury.’ I kicked and screamed and kept looking.”
A family physician recommended Spaulding Rehabilitation Hospital in Massachusetts, where Patriots’ football players go to recover. They initially refused him. Rachel said she called there herself, adamant: “We had our full lives before this fall, at least give him a chance.”
The hospital relented.
There, in a span of two weeks, the Desgrosseilliers learned that a sister-in-law had died, his younger brother had suffered a heart attack and his son-in-law lost at sea.
“It was horrible. It was like it didn’t stop. We had to be careful how we gave him all this news,” Rachel said.
But it was also at Spaulding that Harvey started to get better.
By July he recognized family and remembered the details of his life. He went from barely eating to ordering double-meals. “When the brain starts healing, it uses up all the calories your body can give it,” Rachel said.
He came home at the end of the month, after friends and family helped Rachel clear rooms of anything he could bump into or trip on, add gates to the stairwells and recreate their bedroom in their downstairs living room.
Harvey has continued therapy locally three times a week at WestSide, a Goodwill neural rehabilitation center that was until last week threatened with budget cuts that could have made his recovery more difficult. (See related story.)
For all his progress, Rachel still can’t leave her husband alone for more than two hours. She worries that he’ll fall or need her.
He’s been given a prognosis of two to six years to recover from the brain injury. Soon, he hopes to leave for the Eastern Blind Rehabilitation Center, a VA hospital in West Haven, Conn., where he’ll stay for an intensive three-month schooling.
“There’re going to teach me a lot of things, things I’m not familiar with anymore,” Harvey said.
Rachel will only be allowed to visit on weekends. That separation is going to be hard.
I’ve got to have him’
The whole experience “has taught me that my wife is very capable. It’s been a surprise to me, to learn (what he had been like in the hospital),” Harvey said.
He’s come at the recent months with a good attitude, he said, which helps.
“Things are funny to me anyway. I try to find the comedy in things. I like to laugh, I like to hear people laugh. It sounds crazy, (but) that’s what I think keeps people going,” he said.
He can see two feet away, vaguely. A hint of someone’s smile, but not their eyes. His ability to smell and taste are gone, robbed by the brain injury. He’s also on double hearing aids now, a decline that started before the fall, probably hastened by it.
A few steps from their house, Harvey has a barn full of tools and chain saws from his business. He’d love to get back into it, telling himself that some things he’ll use again, some things he won’t.
They’re both struck by the lack of help available after a brain injury, and how most people wouldn’t imagine that a simple fall in their own home could lead down such a dark path.
“You think people taking risks, foolish guys on the motorcycle,” Rachel said.
Mandy seems to know to stay out from under Harvey’s feet, often snuggling with him in a chair. Rachel has added texture to buttons on the TV remote and a Walkman to help him find on, off and play. At a recent lunchtime, she coached him through a dozen steps to make a bowl of tomato rice soup, from turning on the stove to finding crackers.
Their back-and-forth is easy and gentle.
Harvey has a full head of soft white hair that he half insists used to be black, before the fall. He revels in telling a stranger, “Do you know what she did before (we met)? She was a nun – nun of this, nun of that. She saw me and said, I’ve got to have him.'”
Brain injury changes a person. It drives some couples apart. Rachel’s grateful that hasn’t happened.
“We’ve gotten so close,” she said. “He forgot everything, but he never forgot me.”
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