by Kim Hilsenbeck
Editor’s note: This story originally ran in February 2013. Lynda Sierra passed away Nov. 4, 2014 following a five-year battle with Alzheimer’s.
Lynda and Roberto Sierra of Kyle have spent 23 years together, happily married for nearly 20. But Lynda Sierra, 66, now has trouble remembering most of those 8,400 days.
In fact, because of Alzheimer’s, she sometimes has difficulty remembering yesterday.
Roberto is now her primary caregiver. He took an early retirement after Lynda’s condition started to deteriorate. That meant a loss in monthly income, but Roberto felt it was the right thing to do.
The Kyle couple learned of Lynda’s diagnosis more than two years ago.
According to Christian Wells, executive director of the Alzheimer’s Association Heart of Texas Chapter, the disease is often diagnosed once the patient’s symptoms become more pronounced and difficult to ignore, which typically means the onset was years earlier.
“A lot of folks, once diagnosed, have probably had Alzheimer’s for three to four years,” Wells said.
That diagnosis for the Sierras signaled a change in their relationship.
“Lynda was very independent and able to take care of things, pay bills, clean the house,” Roberto said. He now does all of those things.
He said his wife is in what he called Stage 5 of the disease; there are seven total. Though she is taking several prescription medications, there is no cure for Alzheimer’s. It is a debilitating and eventually fatal neurological disease that causes irreparable cellular damage to the brain.
Eventually, a patient’s body will no longer have the ability to coordinate primary functions such as chewing and swallowing.
But Lynda is not at that stage yet.
The Sierras are taking things one day at a time because that is all they can do. The medicine she takes, which include Lexipro and Namenda, seemed to have a slowing effect on Lynda’s symptoms, according to Roberto. But in the past few weeks, he said he has noticed additional decline in her cognitive function.
Sitting around a table on an overcast Monday afternoon, the Sierras shared their story and the journey they’ve been on ever since Lynda’s diagnosis.
At times, Lynda was smiling and cheerful, especially at those glimpses of happy memories that Roberto helped her recall. She would switch to a look of worry and sadness when talking about the future, the disease and what it’s doing to her and her husband.
Roberto said she may remember an incident or event, but then later the same day would not be able to recall the same event.
But on the day she spoke with the Hays Free Press, she seemed to recall how she and Roberto met 23 years earlier at Aquafest in Austin on Auditorium Shores.
They were working in a food cart together.
“She pinched my butt,” Roberto said, a devilish grin spreading across his face.
Lynda took her thumb and forefinger and made a pinching motion. She laughed, lighting up at the memory – or what she could piece together of it. The smile erased years from her face that now seems etched with worry and fear.
After that initial pinch, they didn’t talk again until a year later, when they randomly bumped into each other at a convenience store in south Austin. It turns out they were both divorced by that time and living about two blocks apart.
Roberto was struggling with alcohol and drug abuse when he and Lynda reconnected. In 1991, he was diagnosed with congestive heart failure. His doctor told him if he didn’t change his life, he would be dead in six months.
“I haven’t had a drink in 21 years,” he said.
He credited Lynda with helping him through that rough time in his life.
These days, Roberto is repaying the love from his wife by making sure she has everything she, and he, needs to cope with Alzheimer’s. He has taken up the task of educating himself about the disease and its effects. He has contacted assisted living facilities, including Provident Memory Care in Buda, should it get to the point where he can no longer care for her. He has been in touch with a hospice provider to prepare for when Lynda will need it. He has attended caregiver support meetings.
Wells said caregivers of Alzheimer’s patients are at greater risk for depression than those who care for loved ones with other debilitating diseases.
“They are also more at risk for having their own serious health problems,” she said.
Wells said in her nine years with the organization, she believes the most difficult part of caring for Alzheimer’s patients is that the relationship and the roles change between the patient and the caregiver.
“You do in essence lose your partner,” she said. “The patient changes so dramatically.”
She said it’s also a very frustrating situation because there is no curative care.
“It cannot be treated, reversed or stopped,” Wells said.
A few potential treatments may be on the horizon. Wells said researchers are exploring a vaccine and repurposing an existing medication; for example, an allergy inhaler has shown some promise in a clinical trial. There is also a device similar to a pacemaker that has shown initial promise in helping brain synapses and neurons fire correctly.
“But any real type of cure, or even a way to stop the disease’s progression, could be 15 to 20 years away or more,” Wells said.
That means there is no cure for Lynda Sierra or the estimated 5.4 million other Alzheimer’s patients living in the United States.
According to data from the Alzheimer’s Association, the direct costs of caring for those with the disease or other forms of dementia was $200 billion, including $140 billion in costs to Medicare and Medicaid.
Based on final mortality data from 2000-2008, death rates for most major diseases such as breast cancer, stroke, HIV/AIDS and heart disease, have declined. Deaths from Alzheimer’s have increase 66 percent during the same time period.
Lynda Sierra said she feels terrible about the burden her husband is under because of her disease.
“I love him a whole bunch and I know he gets the brunt of everything,” she said. She put her hand on his arm and patted it. “There were times when I could remember things easily and now I can hardly do that anymore. What bothers me the most is what it does to him.”
She may want to consider herself fortunate to have a caregiver like Roberto. The Alzheimer’s Association estimates that about 800,000 Americans with the disease live alone and about half of them have no identifiable caregiver.
And the risks associated with having Alzheimer’s and living alone are higher, including inadequate self-care, malnutrition, untreated medical conditions, falls, wandering from home unattended and accidental deaths.
But Roberto said he has to worry about those risks with Lynda, too.
“She will sometimes get lost in our house,” he said. “She just can’t remember where she is.”
“There are times when I turn around and go, where am I?” she added.
Most times, it will come back to her, she said.
“Alzheimer’s has created a new normal for us,” Roberto added.
Seemingly calm and even-tempered, Roberto said he occasionally gets mad at Alzheimer’s.
“I’m not mad at Lynda, I’m just mad at the disease,” he said. “I know she’s my wife but the disease is changing her and taking her away from me.”
A day after the interview, Sierra called to share a story about his wife.
“Before my niece died in 1997, Lynda was in her hospital room. She made Lynda promise to help her look beautiful for her funeral,” he said.
Sierra said his niece was buried in Lynda’s wedding dress.
“I just wanted people to know the kind of woman she is,” he said.