Lori La Bey illustrates the challenges of dealing with her mother’s Alzheimer’s with a photograph. The picture was taken at Lori’s wedding and she is a beaming bride flanked by her equally happy mother and father on that special day.
“Nothing in the picture is the same—I’m divorced, my dad passed away from brain cancer, and my mom has Alzheimer’s,” she said. “And that’s how it is when we are dealing with someone with Alzheimer’s—we cannot expect things to be the same.”
Yet many family members approach the person who is living with dementia as they used to be, or how they want them to be again. Lori, 52, emphasizes that it is important for people providing dementia home care to stop acting as if everything is OK, when it is not.
“If they walk into their bedroom and cannot figure out where they are, a caregiver comes in and tries to explain it to them,” she said. “But there is no sense in arguing or trying to fix it because they cannot remember it and it will not come back to them later.” In fact, correcting someone or brushing off their symptoms cannot reverse the dementia or rehabilitate them.
Lori said that her now 83-year old mother has had Alzheimer's for 30 years, but was not diagnosed until the mid-1990s. The most common cause of dementia is Alzheimer’s disease, which damages and kills brain cells and results in memory lapses, disorientation, difficulty completing daily tasks such as getting dressed, and language difficulty. As it progresses, dementia takes away a person’s ability to think and interact with the world.
Lori said that often people ask her if her mother can still remember her name. “It’s one of their measures, and if she cannot remember then it’s an excuse not to visit or converse,” she said. “We have to stop judging the person on the normal standard. Whether she knows my name or not is irrelevant. It’s just like with a baby – we focus on what they can do instead of focusing on what is wrong.”
Learning to care for someone with Alzheimer’s requires patience and dedication. Lori portrays her early caregiver self as too controlling and out of balance. “None of us are in control of this disease,” she said. “I was always the perfect one and my brothers realized that they couldn’t meet my standards and then I was frustrated wondering why they weren’t helping me.”
With her mother now in the final stages of Alzheimer’s, Lori said that just seeing her mother open her eyes makes for a good day because she can see that she is still connecting. “A battle as a caregiver is that you want that old person back,” she said. “We focus on the loss, and we don’t even know that we are doing it. Once I realized I had this relationship with my Mom on a whole other level, I learned so much.”
Although her parents moved into a nursing home when Lori’s father was diagnosed with brain cancer in 2001, Lori’s role of family caregiver shaped that into a career to help others in the same situation.
“I developed a tool called “Memory Chip”,” she said. “This puts the focus on three things: are they happy, are they pain-free, are they safe? If you focus on those three things, then you are focused on the person and truly caring for them.” To learn more care giving insights from Lori or to see Memory Chip, visit her award-winning blog: www.alzheimersspeaks.com.
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