Alzheimer's is thought of as a disease of the elderly. But there are also people — maybe a couple hundred thousand or more — who have Alzheimer's in their 40s and 50s. People like Teresa Lambert, who is 54.
Lambert has come to Washington to tell members of Congress how hard it is for people with early onset Alzheimer's to get health insurance; one-third of them have no health insurance at all.
Several years ago, Lambert was managing a chain of jewelry stores. But she started having trouble making sense of the revenue spreadsheets. She was in her late 40s — she can't remember the exact year — when she had to quit her job.
Today, there's still a lot of things she can do. She drives her white pickup truck around her neighborhood in Abilene, Texas. She's been a caretaker for her elderly parents — including her father, who died of Alzheimer's on Christmas Eve.
And in the past year, Lambert has made three trips from Texas to Washington.
She always comes with her friend Libby Connally, who runs the local Alzheimer's Association chapter. They look like sisters — two small women with the same short haircut and similar glasses, even similar black and white print blouses.
There's little in the way Lambert looks, or even the way she speaks, to show she has early onset Alzheimer's. So she has to explain to the young congressional staffers she meets — none of whom on this day can name a person they know with Alzheimer's — about the early form of the disease.
"Most people that meet you think, 'Oh, gosh you're normal.' Well, you're not at my home with me," she explains. "I forgot how to use my washing machine. And what I did was I took the clothes and put it in my big freezer, because it was big and white. And I didn't know I put our dirty clothes in the freezer. Isn't that nice? Felt good, though, on a hot day."
Without A Job, Without Health Insurance
When Lambert lost her job, she lost the health insurance that came with it. But she needed that coverage more than ever because doctors still hadn't figured out what was wrong. So she paid for the medical tests out of her own pocket.
"Let's see: The MRI was over about $3,500. Just the reading of it was almost a thousand," she says. "Blood work ran about $600." She's been paying off those bills $10 and $20 at a time.
It helps that just recently she got on Medicaid, the program for the poor and uninsured. That pays for some — but not all — of what she needs. She explains that Texas Medicaid will only pay for three drugs a month.
"And I take 10 or 11 drugs — I can't remember," she tells one congressional aide. "And that makes me decide which ones are the most important ones. Right now, I'll pick my Alzheimer's medicine. But then you've got to have blood pressure medicine, too, you know, and I had trouble with that. I ended up in an ... ambulance because I allowed my blood pressure to go to 154 over 112 ... and I had a stroke. So, you know, you can't do that."
Lambert is asking members of Congress to let people like her get on Medicare right away.
Making Medicare Available For Younger People
Medicare was created for the elderly. Then Congress opened it up to younger people who are disabled or sick — that includes people with early onset Alzheimer's, in addition to people with multiple sclerosis, Parkinson's disease, severe heart conditions, psychiatric illnesses and other health problems.
But younger people have to wait two years or more to get Medicare coverage.
Karen Davis of the Commonwealth Fund, which funds research on health policy, says that's too long. "When somebody becomes disabled — they have cancer, they have a stroke, they have a serious health condition — when they need medical care is right then, not two years from now."
Congress created the two-year waiting period to make sure only people who are really sick and really can't work get coverage. Right now, only those with Lou Gehrig's disease and end-stage renal disease — both which kill quickly — are allowed onto Medicare right away.
Davis notes that there was another reason Congress made people wait for coverage. "The thought was that many people had private insurance, and if government were to cover them, they would drop their private insurance and it would shift cost onto government," she says.
But Davis says that turns out to be largely wrong. Often the costs already get shifted to government. The Commonwealth Fund's studies have shown that about half of the people on the waiting list either have no insurance, or they end up on Medicaid.
With Washington focused on changing the health care system, this might seem like a moment to address the waiting list. There are nearly 2 million people on the list, but with Medicare's costs already soaring, most current proposals to fix health care only partially address people on the waiting list. It's expensive to get them off — about $8 billion.
"When you're talking about people who are disabled, it is going to be costly," says Davis. "But failure to cover it means that the families themselves are faced with extraordinary financial burdens, wiping out any savings they might have accumulated for retirement."
Affecting The Entire Family
In Memphis, Tenn., Diane Thornton runs support groups for family members who care for someone with Alzheimer's.
Often someone comes because they're having a hard time watching a loved one losing memory or no longer able to follow a conversation. Recently she counseled one husband grieving for his wife with Alzheimer's. "I said, 'Can your wife still enjoy music? Does she still like to go sit out in the garden and feel the sun on her face?' Find the tiny things, you know."
Thornton understands this because at the age of 47, she has Alzheimer's, too.
She talks of how her family tries to cope. "My oldest son said to me, 'I just want to know, are you going to be there when I graduate from college?' And I said, 'Honestly, honey, I don't know. You know, I don't. I don't know what shape I'll be in when you graduate from college, but by god, you better graduate.' "
Thornton lives with her two teenage sons and her partner, who works for the city. Because Tennessee doesn't recognize gay couples, Thornton can't get on her partner's insurance. She lost her own insurance when she had to shut down her mental health counseling practice. She could have kept for a limited time the insurance she already had, but with no income, she couldn't afford it. "The cost was outrageous. I mean I had no money coming in. And to spend $1,200 a month for COBRA was ludicrous."
A Long And Complicated Application Process
Vicki Gottlich of the Center for Medicare Advocacy says there are 2 million people on the Medicare waiting list, and possibly another 5 million who might be eligible but haven't applied. One reason is that, sometimes, people simply "don't want to admit that they're disabled. They have this vision that they will be able to go back to work." Another reason: Applying is a confusing process.
Both reasons were problems for Thornton. At first, she was reluctant to apply for disability benefits, the first step toward the waiting list. She thought doctors would find the cause of her confusion and she'd go back to work.
The doctor she saw at a free medical clinic urged her to apply for the waiting list. But by the time Thornton agreed, that doctor was gone and the busy clinic failed to send the proper medical documentation to Social Security. Like most people, Thornton's first application was denied.
"It's very hard to get Social Security disability benefits," says Gottlich. "You have to prove you can't do any job in the economy." It wasn't enough for Thornton to simply show she could no longer work as a therapist. "You have to prove you can't be a widget maker, either," notes Gottlich, or make a living in any other job.
Now Thornton's had to hire a lawyer and appeal for a rehearing. It's a lengthy and bureaucratic process.
Thornton did find one doctor who helps her get her Alzheimer's medications for free from the drug companies. But recently, she's been feeling weakness in her hands. She needs to go to another doctor — a neurologist. But she can't afford to pay out of pocket. "We've got a kid going to college in a year," she says with a deep sigh. "I've already, you know, broke the bank. I just don't feel like I could ask my family to take another dime to pay to see another doctor that is then going to give me another thousand-dollar bill."
So Thornton ignores the tingling in her hands. And she hopes her request for Medicare will come through, before she gets too sick.