Bobby Lene got his death sentence in April from doctors at Rusk Rehabilitation Center.
His brain is slowly dying. It is already significantly smaller than it should be for a man of 57. Bobby has early-onset Alzheimer’s, a disease that can affect people as young as 30.
“I have done everything I can do to stay healthy,” he says. “And then this hits you from the side. That’s what tears you up, I was really, really mad for a while.”
Bobby has been an athlete and an active member of his community his whole life. He hosts his church’s men’s group and volunteers as an auxiliary sheriff’s deputy in Adair County and as a counselor for prison inmates. He lives in a yellow house with green shutters outside of La Plata, south of Kirksville, with his wife, Judy, 58, and her daughter Jessica, 18.
It is a clear November morning. The air is crisp, the sky clear. Bobby squints against the sun to locate an ornery puppy he is training for hunting. Large cart wheels surrounded by flowers form the portal to the driveway. Around the house, a large patio faces the horse paddock, where Boss is trotting around with the stallion Bobby has not had time to break in. Since the diagnosis, the Lene family has struggled to comprehend their future. Bobby and Judy focus on coping with one day at a time, filling each with what brings them the most joy and meaning — their family.
“I have been so very, very blessed over the years,” Bobby says. “We got 11 grandchildren — each one is so beautiful and so wonderful. I tell you what, I could not be happier.”
A slow march
Doctors have not yet been able to determine what causes Alzheimer’s, including the early-onset version that affects people younger than 65, but they think there might be genetic triggers.
“This could be something that comes down the line into my children, and that scares me the most,” Bobby says.
The disease cannot be diagnosed with certainty until after the patient is dead, when an autopsy can verify that the signature amyloid plaques and neurofibrillary tangles are present in the brain.
The amyloid plaques form when an enzyme snips away parts of a protein that helps brain cells stay healthy. The snipped-off parts form plaques with other cells that intercept the signals between the brain cells.
When these signals are blocked, the brain cells start to die. The neurofibrillary tangles form when the tau protein, which forms the supporting structure of the micro tubes inside brain cells, starts bundling up with other tau proteins. The brain signals travel through this tube on their way to the cell’s surface, where it is sent to the receptors attached to other brain cells.
A signal like that can travel up to 5 feet before it reaches the intended receiving cell. When the tau protein bundles, the micro tubes start collapsing, which leads to miscommunication among the cells and, later, the death of that brain cell.
The massive death of brain cells means memories and skills, such as talking and getting dressed, are lost. The brain of a person suffering from Alzheimer’s gradually will become smaller than the brain of a person without the disease.
The patient knows what is going on and what he wants to do but cannot muster the skills.
“It is so cruel — you just lose yourself,” Judy says.
The Lenes have focused on taking care of practical matters such as finding proper medication, setting up powers of attorney and figuring out how to deal with the financial burden of long-term care.
“We are not what you call wealthy people, and we do not have a lot in savings, but we are looking at options of how we will handle that,” Judy says.
As the caregiver, Judy knows she must focus on the road ahead. But she says she does not want to look too much into the future. The final stages of Alzheimer’s can be hardest on the caregiver.
The pair say they find solace in their faith and the belief that God will see them through.
Judy herself was ill for quite some time. In December, she went through two open-heart surgeries just eight days apart. She says she believes the Lord was preparing her for the task ahead.
“I saw how Jesus Christ in his wisdom knew this was coming up, and I got repaired,” she says.
Bobby still works as a fleet manager for the city of Kirksville. His doctors have found a medication regimen that keeps the disease somewhat stable and helps Bobby stay alert and active. Bobby seems to have trouble with numbers, and he is not looking forward to this fall’s budget season at work. He was working on a 10-year projection of vehicle trade-ins when he discovered he had trouble concentrating. That is what prompted the Lenes to consult a doctor.
The first doctor told them there was no problem because Bobby could remember dates and names.
They sought additional help from Irving Asher, a Columbia neurosurgeon. Asher told the Lenes that the shrinkage in Bobby’s brain tissue was noticeable. If the patient is younger than 65, the disease is classified as early-onset Alzheimer’s.
“The earliest case we know about is (age) 28, but that is extremely rare,” says Ashley Smallwood of the mid-Missouri chapter of the Alzheimer’s Association.
She says about 10 percent of Alzheimer’s cases are early-onset.
“There’s a lot of days that goes by that I don’t feel there is anything wrong,” Bobby says. “You have good days and bad days. That surprised me because I was always one to take off in the morning and never stop.”
The Lenes try to deal with the bad days together. Bobby said he tries not to hold back, and he lets Judy know if he knows what the cause of his worry is. Bobby worries a lot — about how this will affect his family, about how it will affect him and about not being able to handle things on his own. The Lenes emphasize the importance of involving the community and the family in the process. The couple has been open about Bobby’s diagnosis. Everyone in their community knows him, knows about the disease and asks how he is doing, Judy says.
The Lenes attend regular support group meetings hosted by the Alzheimer’s Association, as well as one Bobby hosts for men through his church. They raised several hundred dollars during the Memory Walk benefit in Macon last month, and that money benefits their community. Judy says she thinks the couple’s seven children from their first marriages are in denial a bit, but she has provided them information, and they have undertaken their own research. Bobby’s daughter bought her 8-year-old son a book about Alzheimer’s to prepare him for Grandpa’s change. The most surprising thing, Judy says, was how hard her youngest daughter, Jessica, took the news. Jessica, a freshman at Missouri Western State College, decided to move home and spend the next few years at a community college so she could spend time with Bobby.
Bobby says he doesn’t think he will slow down much.
He would like to work around the house, take care of the horses and the land and just try to stay active for as long as he can.“The rest of the way is not going to be pretty. I would do anything to keep my family from going through that,” Bobby says, his voice breaking up and his eyes brimming with tears. “If there is any way for me to go through it by myself, that’s the way it should be. I just want to enjoy the family as much as possible.”