Alzheimer鈥檚 is thought of as a disease of the elderly. But there are also people 鈥� maybe a couple hundred thousand or more 鈥� who have Alzheimer鈥檚 in their 40s and 50s. People like Teresa Lambert, who is 54.
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Lambert has come to Washington to tell members of Congress how hard it is for people with early onset Alzheimer鈥檚 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 鈥� she can鈥檛 remember the exact year 鈥� when she had to quit her job.
Today, there鈥檚 still a lot of things she can do. She drives her white pickup truck around her neighborhood in Abilene, Texas. She鈥檚 been a caretaker for her elderly parents 鈥� including her father, who died of Alzheimer鈥檚 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鈥檚 Association chapter. They look like sisters 鈥� two small women with the same short haircut and similar glasses, even similar black and white print blouses.
There鈥檚 little in the way Lambert looks, or even the way she speaks, to show she has early onset Alzheimer鈥檚. So she has to explain to the young congressional staffers she meets 鈥� none of whom on this day can name a person they know with Alzheimer鈥檚 鈥� about the early form of the disease.
鈥淢ost people that meet you think, 鈥極h, gosh you鈥檙e normal.鈥� Well, you鈥檙e not at my home with me,鈥� she explains. 鈥淚 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鈥檛 know I put our dirty clothes in the freezer. Isn鈥檛 that nice? Felt good, though, on a hot day.鈥�
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鈥檛 figured out what was wrong. So she paid for the medical tests out of her own pocket.
鈥淟et鈥檚 see: The MRI was over about $3,500. Just the reading of it was almost a thousand,鈥� she says. 鈥淏lood work ran about $600.鈥� She鈥檚 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 鈥� but not all 鈥� of what she needs. She explains that Texas Medicaid will only pay for three drugs a month.
鈥淎nd I take 10 or 11 drugs 鈥� I can鈥檛 remember,鈥� she tells one congressional aide. 鈥淎nd that makes me decide which ones are the most important ones. Right now, I鈥檒l pick my Alzheimer鈥檚 medicine. But then you鈥檝e got to have blood pressure medicine, too, you know, and I had trouble with that. I ended up in an 鈥� ambulance because I allowed my blood pressure to go to 154 over 112 鈥� and I had a stroke. So, you know, you can鈥檛 do that.鈥�
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 鈥� that includes people with early onset Alzheimer鈥檚, in addition to people with multiple sclerosis, Parkinson鈥檚 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鈥檚 too long. 鈥淲hen somebody becomes disabled 鈥� they have cancer, they have a stroke, they have a serious health condition 鈥� when they need medical care is right then, not two years from now.鈥�
Congress created the two-year waiting period to make sure only people who are really sick and really can鈥檛 work get coverage. Right now, only those with Lou Gehrig鈥檚 disease and end-stage renal disease 鈥� both which kill quickly 鈥� are allowed onto Medicare right away.
Davis notes that there was another reason Congress made people wait for coverage. 鈥淭he 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,鈥� she says.
But Davis says that turns out to be largely wrong. Often the costs already get shifted to government. The Commonwealth Fund鈥檚 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鈥檚 costs already soaring, most current proposals to fix health care only partially address people on the waiting list. It鈥檚 expensive to get them off 鈥� about $8 billion.
鈥淲hen you鈥檙e talking about people who are disabled, it is going to be costly,鈥� says Davis. 鈥淏ut 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.鈥�
Affecting The Entire Family
In Memphis, Tenn., Diane Thornton runs support groups for family members who care for someone with Alzheimer鈥檚.
Often someone comes because they鈥檙e 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鈥檚. 鈥淚 said, 鈥楥an your wife still enjoy music? Does she still like to go sit out in the garden and feel the sun on her face?鈥� Find the tiny things, you know.鈥�
Thornton understands this because at the age of 47, she has Alzheimer鈥檚, too.
She talks of how her family tries to cope. 鈥淢y oldest son said to me, 鈥業 just want to know, are you going to be there when I graduate from college?鈥� And I said, 鈥楬onestly, honey, I don鈥檛 know. You know, I don鈥檛. I don鈥檛 know what shape I鈥檒l be in when you graduate from college, but by god, you better graduate.鈥� 鈥�
Thornton lives with her two teenage sons and her partner, who works for the city. Because Tennessee doesn鈥檛 recognize gay couples, Thornton can鈥檛 get on her partner鈥檚 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鈥檛 afford it. 鈥淭he cost was outrageous. I mean I had no money coming in. And to spend $1,200 a month for COBRA was ludicrous.鈥�
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鈥檛 applied. One reason is that, sometimes, people simply 鈥渄on鈥檛 want to admit that they鈥檙e disabled. They have this vision that they will be able to go back to work.鈥� 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鈥檇 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鈥檚 first application was denied.
鈥淚t鈥檚 very hard to get Social Security disability benefits,鈥� says Gottlich. 鈥淵ou have to prove you can鈥檛 do any job in the economy.鈥� It wasn鈥檛 enough for Thornton to simply show she could no longer work as a therapist. 鈥淵ou have to prove you can鈥檛 be a widget maker, either,鈥� notes Gottlich, or make a living in any other job.
Now Thornton鈥檚 had to hire a lawyer and appeal for a rehearing. It鈥檚 a lengthy and bureaucratic process.
Thornton did find one doctor who helps her get her Alzheimer鈥檚 medications for free from the drug companies. But recently, she鈥檚 been feeling weakness in her hands. She needs to go to another doctor 鈥� a neurologist. But she can鈥檛 afford to pay out of pocket. 鈥淲e鈥檝e got a kid going to college in a year,鈥� she says with a deep sigh. 鈥淚鈥檝e already, you know, broke the bank. I just don鈥檛 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.鈥�
So Thornton ignores the tingling in her hands. And she hopes her request for Medicare will come through, before she gets too sick.