Alzheimer’s and dementia are sneaky diseases. They can strike at any age. They can come on fast. Or they can take over a person through a course of years. And they affect not only the patient, but entire families as well.
For Krista Fodera, it took one phone call to recognize that her mother was having cognition problems.
During a holiday celebration in 2012, she listened to her mother have a long conversation with a stranger on the other line.
“Mom ended up giving her social security number to the person on the phone. It was a spam call and once she realized what was happening, it caused a lot of panic in her,” Krista says. “Mom cried daily for a month because she did this. It was just so unlike her to give information over the phone.”
Sixty-six at the time, Krista’s mother was also exhibiting other symptoms, like phantom choking sensations and repetitive behaviors. Physical and visual hallucinations and delusions often accompany a dementia diagnosis.
“We were out for supper celebrating Mother’s Day,” Krista recalls. “Mom was eating OK but then she felt like something was stuck in her throat. She kept complaining and had a hard time swallowing.”
Then, after a trip to visit family in Washington, DC, Krista’s mother began to obsess about her blood pressure.
“She couldn’t swallow. She thought her blood pressure was skyrocketing,” Krista says. “She is a former nurse and insisted that Dad take her to the ER – five times in one week. Doctors insisted there was nothing wrong. She just didn’t believe it.”
Reality hits home
As her mother’s behaviors continued to cause concern, Krista says she noticed other subtle hints as well, like asking the same questions over and over.
“She’d focus in on one topic, like her blood pressure, and then just latch on to that,” she says. “Then after a while her ability to converse started to diminish.”
But it was a regular Sunday morning at church when reality really hit home.
“I was sitting next to her when she leaned over to me and said ‘I’m going to ask you a stupid question. When is your birthday?’ ” Krista recalls.
For many dementia patients, it can take a year or more for an accurate diagnosis, especially if the person is younger than 70 years old. A misconception of the disease is that it is for people who are in advanced age.
It took some time to get Krista’s mother diagnosed, however, after three hours of grueling neuropsychological testing and other examinations, the diagnosis was confirmed.
Compensating for loss
Stupefied that her mother couldn’t remember her birthday, Krista began asking her father questions about what was going on at home.
He admitted that her mother would write down important dates like Krista’s birthday several times a day, trying to hold on to past milestones as best as she could.
Still obsessed with the phantom choking and afraid to eat solid foods, Krista’s mother dropped down to 112 pounds. Subsisting on a liquid diet for several months, it took Krista’s dad a long time get her mom’s weight back to 130.
“It’s so hard because my dad wants to cook for her. She refuses to eat because she thinks it’s going to get stuck in her throat,” Krista says. “Dad does take her out pretty much every day to the Speedway and gets her soup. The people at the restaurant have gotten to know what she likes. They take care of her.”
Caring for the caregiver
Nearly in all cases when Alzheimer’s and dementia enters the picture, one loved one becomes a primary caregiver. For Krista, her father claimed that role.
And it’s not been easy.
Respite care services are available to the couple, but unfortunately, Krista’s father doesn’t use the 16 hours offered each week. He says he doesn’t like seeing the later stage patients, knowing that his wife will one day be one of them.
“He’s in denial,” Krista admits. “He brought her to the memory care respite service once and that was it.”
While Krista’s mom is in the earlier stages of the disease, her father has already sacrificed much of his retirement time to care for her mother.
“I worry about what it’s doing to him,” she says.
Navigating the journey
Krista does as much as she can to help her parents out when she is able. However, she has two children of her own, one a son who has autism spectrum disorder and needs extra help for his behaviors every once in a while.
“It’s been a busy time in my life,” she says. “I do as much as I can and I don’t know how my dad does it. All day. Every day.”
Krista makes sure she gets a regular phone call in to her mother. The conversations can be “normal,” or sometimes a bit unsettling as her mom grapples with the reality of her diagnosis.
“Every time my mom asks me about Alzheimer’s she says ‘At least I’m not calling you and saying there’s a strange man in my house. At least I’m not doing that yet,’ she says.”
Other times the conversation isn’t as lighthearted. Krista says: “We’ll be talking about what she ate for lunch, her blood pressure, and then she’ll all of a sudden say ‘I didn’t know I had Alzheimer’s!’ ”
Music and the future
While Krista and her family adjust to the new normal and anticipate more changes to come, they hold on to all of the great things her mother can still do. One of those things is remembering popular music.
“My mom is excellent with music. Dad will turn on oldies and she’ll start blurting songs. She sings away and remembers the lyrics to so many songs. It’s unbelievable,” she says.
Holding on to what her mother can still do is integral, especially for her father, who plans to be the primary caregiver for as long as he can.
“I don’t think he wants her to go to a memory care. Those two have been together for almost 50 years. It will be hard to separate them,” she admits. “It’s a long illness and we don’t know how long it’s going to take.”
Krista says that through all of the changes she’s seen in her mom and the dynamics of her family, she wants people to know that others shouldn’t be afraid to talk about dementia and Alzheimer’s. She believes awareness is key, especially as the Baby Boomers begin to age and are more affected by neurodegeneration.
“It’s not a fun disease. And I know it’s not going to get any better,” Krista says. “But it’s better to be out in the open so that people understand that this disease takes away so much and something needs to be done so our kids don’t have to go through it.”
And as Krista’s family endures the Long Goodbye, she’s certain they’ll celebrate with music, cherish memories as they can, and “hold on to the good moments,” she says.
For more information about Alzheimer’s and related dementias, or to volunteer and advocate for the diseases, visit alz.org.