Charlotte Holmes lived in a quaint, two-story house in Caledonia, mowed her own lawn and took care of herself without help.
One day in 2011, she fell.
“We took her to the emergency room. She had fractured her pelvis, and within 24 hours, she went from a perfectly sound mind to thinking she was on a train,” said Holmes’ daughter, Yvonne Burns.
“It was like wires got crossed, and they’ve been that way ever since.”
Holmes represents an uncommon case of a common condition among the elderly: Alzheimer’s Disease.
“Most cases with Alzheimer’s are a gradual thing,” Burns said. “You prepare yourself for it because you know it’s coming. We had no preparation, whatsoever, because it was literally overnight.”
Burns, 51, said her mother’s unexpected condition was difficult to accept. Burns, along with her husband and daughter, attempted to care for Holmes but soon realized she needed more supervision than they could provide.
“We tried for six months [to take care of her], but it just got to the point where we couldn’t anymore,” Burns said. “It’s so hard.”
Passing her mother’s care to more capable hands at a personal care home was also emotionally taxing.
“When we first put her in, [visiting] was an everyday thing,” Burns said. “She would cry, and I would cry when I left. It was just very hard because you don’t want to put your loved ones in a nursing home.”
While Burns gathered resources to enroll her mother in the Alzheimer’s and Dementia care unit at Plantation Pointe’s retirement community in Columbus, many Mississippians, and loved ones of Alzheimer’s victims across the nation, may not enjoy that luxury or know their options.
Holmes, now 75, is one of nearly 52,000 Mississippians living with Alzheimer’s, according to the Alzheimer’s Association. That number is expected to reach 65,000 within 10 years.
About 206,000 people in Mississippi served as unpaid caregivers to Alzheimer’s patients in 2015. As the disease claims more lives, more Mississippians may accept the burden of that role.
Finding care
In 2011, Burns admitted her mother to Plantation Pointe’s Philwood Suites, a state-registered Alzheimer’s and Dementia Care Unit. With only 20 beds in Philwood and four personnel assigned to the unit, care is personal and extensive for patients but limited to a relatively small population.
“In order to be in Philwood suites, the patient needs to be at a point in their disease process where they’re still moderately functioning with being able to do some things for themselves,” said Misty Holder, director of social services and admission.
A Mississippi State Department of Health publication indicates Mississippi has 26 registered Alzheimer’s/Dementia care units in nursing homes and personal care facilities throughout the state.
Holder said Philwood often has to turn away potential residents or add them to a waiting list until beds become free.
“I get calls weekly from people who need Alzheimer’s units, and we don’t have openings,” Holder said.
The importance of routine
State registered Alzheimer’s/Dementia care units must meet a set of minimum operation requirements to be designated. Minimum standards of operation, determined by the MSDH, take into account staff numbers, care plans, services offered and design.
Holder said the design of registered facilities is especially important, as simple details may decrease confusion for Alzheimer’s patients. Also, establishing a routine for patients is key, something Burns realized quickly.
In 2015, during a local flu outbreak, the facility prohibited visits for about two weeks. When Burns was able to visit again, her mother’s confusion was “heartbreaking.”
“I worried about what she was going to be like when I got to go in there,” Burns said. “When I did, she was sitting there eating and didn’t even know what to do with her food. She was picking her food up and putting it in her ice tea glass because she didn’t know to put it in her mouth.”
During her mother’s early days in residential care, Burns visited every day. Each Friday, she took her mother home, so she could spend weekends with family. However, Burns realized changing her mother’s environment and routine did more harm than good.
“After she broke her hip, and I wasn’t able to bring her home, I realized she needed the routine of a daily thing,” Burns said. “Me taking her out was throwing her off.”
Now Burns visits about twice a week.
“[I] sit with her and talk to her and listen to her stories,” she said.
‘You lose them twice’
Holmes’ stories may sound absurd, but Burns said her mother’s surroundings often shape her perception. For instance, Holmes will see a television show and think she’s a part of the action.
“One day she’ll tell you she’s on a cattle drive, and one day she’ll tell you she’s in court,” Burns said. “Every day is different with her.”
Burns misses the little things about her mother.
“I would give anything in the world for my mom to call on my birthday,” she said. “No more shopping. No more cooking. It’s the little things you take for granted.
“You lose them to Alzheimer’s, but you lose them again when they pass away,” she added. “With Alzheimer’s patients, you lose them twice.”
Cost of care
Burns said her widowed mother lived alone and had saved very little money. After Holmes got sick, her home was foreclosed because she missed payments.
Medicaid and a supplemental insurance plan cover her care at Plantation Pointe.
Holder said, like Holmes, Medicaid covers some costs for most Philwood residents. Although the personal care home does accept private pay, the outright cost of caring for Alzheimer’s victims is about $7,000 per month–about $230 a day.
Medicaid’s costs of caring for people with Alzheimer’s in Mississippi reached $529 million this year, according to the Alzheimer’s Association. The Alzheimer’s Association estimates caregivers also provided almost $3 billion in unpaid care in 2015.
Not only do unpaid caregivers give up expansive amounts of their time, they also expend vast amounts of resources, perhaps at the expense of their own health.
An incurable disease
Alzheimer’s is a progressive disease and the sixth leading cause of death in The United States.
Doctor Netrali Patel, assistant professor of gerontology at the University of Mississippi School of Medicine, indicates generalized shrinkage of the brain characterizes Alzheimer’s.
“Normal aging can cause some shrinkage, but in Alzheimer’s dementia you will have shrinkage all over the brain,” Patel said. “You will also see [the main areas] that will be involved in the brain will be the temporal lobe (associated with memory, comprehension and emotion) and the parietal lobe (which processes sensory information). On the MRI, you will see generalized atrophy.”
According to Patel, head trauma has been a risk factor for Alzheimer’s disease, and the Alzheimer’s Association suggests a family history of Alzheimer’s may also contribute to an eventual diagnosis.
Patel said Alzheimer’s consists of three stages: mild, moderate and severe. The general progression of the disease is 8-12 years.
“Mild stage is like a teenager stage; you ask them to do something, and they still forget it,” Patel said. “A moderate stage would be more like a toddler stage; they need assistance with things. A severe stage would be like an infant stage, where they would really need assistance with everything. …You start to see more behavioral problems when they tend to get into moderate to severe stages.”
Burns describes her mother as operating in the moderate stage.
“It’s like talking to a child, and that’s how you have to talk to her,” she said.
Burns hasn’t noticed much decline in her mother’s condition over her five years struggling with the disease, but her mother’s forgetfulness and occasional non-cooperation is evident.
Research has not advanced far enough to cure Alzheimer’s, as doctors do not know the disease’s definite cause.
However, Patel said steady research is underway on aspects of and affects on the human brain. The geriatrician also works with the Memory Impairment and Neurodegenerative Dementia Center at University of Mississippi Medical Center. The organization aims to understand the cause and alter the outcome of Alzheimer’s.
As it searches for a cure, Patel said the MIND center does detailed evaluations and cognitive testing for potential Alzheimer’s victims and offers support and treatment for Alzheimer’s patients and their families.
Perhaps future lives will be saved, but the only hope now is to care, Patel said.
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