Being a caregiver is a tough job. Being a caregiver for an Alzheimer’s patient is an even more challenging task.
When the task is done by a family member instead of a paid professional, it can add a whole new level of adversity.
There are over 5.8 million people with Alzheimer’s in the US with Alzheimer’s dementia in 2019, according to the Alzheimer’s Association website, alz.org. One in 10 people over 65 have it, and almost two-thirds are women.
As well, more than 16 million people provide unpaid care for Alzheimer’s dementia, according to the Alzheimer’s Association.
Former Wisconsin Governor Martin “Marty” Schreiber knows first-hand about the issues faced by family caregivers. His wife of 58 years, Elaine, has been afflicted with the frustrating disease.
“Alzheimer’s is bad,” Schreiber said. “Ignorance of it is worse.”
Not ignorance of the disease itself, he explained, but the potential for ignorance of the ramifications on the people directly affected by it, like caregivers.
When there is an Alzheimer’s patient, explains Schreiber, there are in fact now two patients. The person ill, and the caregiver. It can lead to emotional, physical and psychological issues for the caregiver, explains Schreiber. The issue is daunting.
“No matter how hard you work, and focus, and give up for the person, you can’t stop the progress of the disease,” Schreiber said.
He explains the impossible-to-stop ride makes the caregiver wonder, “what am I doing wrong?”
Schreiber’s journey began after his wife was diagnosed with early onset Alzheimer’s 16 years ago, at the age of 68.
In 2016 he first published a book, “My Two Elaines, Learning, Coping, and Surviving as an Alzheimer’s Caregiver.”
His goal: “Help people understand how best to cope, so the caregiver can survive,” Schreiber said. “Because the job of caregiver can be overwhelming.”
For example, according to the Center for Disease Control and Prevention, 53 percent of caregivers indicate a decline in their health, resulting in the ability to provide care is diminished.
As well, 27 percent of caregivers for adults report a “moderate to high degree of financial hardship as a result of caregiving,” according to the CDC’s website, https://www.cdc.gov/aging/caregiving
Schreiber addresses this in his book and speaks of caregivers’ health declining due to the stress along with reports of suffering from depression and anxiety when trying to deal with their loved one becoming a new person.
He wishes he knew then what he knows now, when the diagnosis was first given. Instead, his goal, now, is to help with what he has learned in the past 16 years.
“What you have to do is let go of the person who once was,” Schreiber said. “I tried to pull her back into my world. That is where I ran into trouble.”
He advises the word “no” should not be used. Deflect, distract. Comply.
“When Elaine has five coats on, and wants to put on a sixth, you can’t explain the laws of thermodynamics to an Alzheimer’s patient,” Schreiber said. “It won’t matter.”
Schreiber tells about, shortly after his wife was first diagnosed, she asked about how her parents were.
“They are dead,” was his honest response to Elaine. “The look of shock in her face,” Schreiber said. “I never want to see that look again.” Elaine was worried she had missed their funeral and their passing. Now when she asks how they are, he says they are fine.
He calls this “therapeutic fibbing.”
If she wants a glass of wine at 9:30 in the morning, he doesn’t say “no.” No is not an option. Does she want to drink with her sisters, her neighbors an, eventually, if the attempt at distraction does not work, would she like red or white?
It is compliance that is also distraction. Maybe she forgets she wanted wine, but if she still does after engaging in the conversation; first, she is an adult, and it is after 5 p.m. somewhere in the world, so who cares. He just wants her happiness.
“Her love, understanding and forgiveness kept us going in the beginning of our relationship,” Schreiber said. “Patience too.”
Schreiber feels it is his job to return the work from early in their 58 years with some of his own now. To be successful, Schreiber explains he needs to join her world.
Beginning October 14, Schreiber will visit six South Dakota cities in three days to speak on Alzheimer’s.
Tuesday, at 6 p.m October 15, hosted at the Community Bible Church at 1516 N. Harrison St. Schreiber will be in Pierre world to speak, not about his book he says, but “about combatting the ignorance associated with Alzheimer’s.”
Entrance is free, and the first 50 families will receive a free “My Two Elaines” book.