Dealing with Alzheimer’s…a kind of love story

Early diagnosis
Early diagnosis can help. Not so much for finding a cure — there is no cure — but because it’s better to know sooner than later in terms of planning, decision making, and understanding behaviors that may develop with Alzheimer’s.
“Up until recently, Alzheimer’s couldn’t be definitively diagnosed until after the person passes away and a brain autopsy is done,” says Bolling.
Now, research experts are able to detect amyloid in living patients. Amyloid is the protein that builds up around the brain cells causing plaques to form and is believed to cause Alzheimer’s disease. Scientists are looking at everything from genetics to changes taking place at cellular and molecular levels in the brain. They are racing for that cure.
“In the meantime, there are screening assessments that a doctor can perform,” Bolling says. “Medical histories, behaviors, and imaging techniques, such as a PET scan or a CT scan, can reveal symptoms.”
Getting a diagnosis can be a difficult, frightening, and nerve-wracking. Resistance and denial are natural responses but shouldn’t be allowed to impede treatment. Anxiety doesn’t help.
“With a diagnosis of Alzheimer’s, you at least know what to expect,” Bolling says. “You can find out about the effect of the disease and how it unfolds. You have some control over how things are going to be managed.”

Developing symptoms
It’s normal for all of us to be forgetful from time to time. No two Alzheimer’s cases are alike, but there are some things to watch for. Bolling explains:
“Alzheimer’s is not an occasional episode of forgetfulness. It’s a steady progression of symptoms over time. In the beginning, the person may forget familiar names or forget recent conversations or forget something he or she just read. Simple tasks become difficult. They may have trouble writing checks or cooking meals. They may leave something on the burner…it may not be safe to leave them alone. They may take off and not tell the family where they’re going. These ‘wandering’ incidents often prompt silver alerts that we’ve all heard on the radio, seen on the TV, or across the Internet. They probably need one hundred percent care at that point. In the end, patients may forget how to eat, how to swallow, how to breathe.”

Assessments
A doctor will want to rule out other possible causes of mental confusion, like delirium caused by an infection, depression, or stroke.
There are many assessments a doctor may conduct. The tests focus on attention, memory skills, and orientation. Bolling’s father suffers from early signs of dementia. She talks about her own experiences:
“My father took a test and was asked to remember and repeat three words. Then he received a BIMS score. That is, the Brief Interview for Mental Status score. Later, he received a rating between no impairment, moderate impairment or severe impairment.”
Her father was rated at moderate impairment.

Strategies
There is no cure for Alzheimer’s.
But there is drug therapy. Two classes of medication have been approved by the U.S. Food and Drug Administration (FDA) for treatment of the cognitive symptoms of Alzheimer’s.
And there are other treatment strategies, like behavioral and environmental modifications. Caregivers may have to change the way they interact with those with Alzheimer’s. Especially, when their behavior is extremely challenging.
“Live in their world,” Bolling’s says. “Don’t argue. Don’t talk above them or around them, talk to them. Remember, they are still human. They deserve dignity and respect.”
Someone with Alzheimer’s may become upset or agitated, but not be able to tell you why.
“They may want something. They may be thirsty, hungry, or need to go to the bathroom. But it may come out as ‘I want to see the baby.'”
Tracking what triggers behaviors, trying different approaches, and validation therapy can be quite effective. Validation is a way of embracing their reality. For instance, if they insist their dead spouse is still alive, don’t argue. Instead, ask them to tell you a story about their spouse.
“Apathy. Pacing up and down the halls. Frustration that escalates to rage. If you’re dealing with behaviors like that, sometimes performing familiar tasks, like folding the laundry, exercise, social engagement, all these things may help.”

By the end of 2019, Alzheimer’s and other dementia cost the nation $290 billion, the Alzheimer Association says. By 2050, these costs could rise to $1.1 trillion. That number could potentially bankrupt Medicare and Medicaid, not to mention the lifesavings of millions of Americans.
More than 16 million American provide unpaid care for people with Alzheimer’s. This is estimated at 18.5 billion hours of care valued at nearly $234 billion.

A house in turmoil
For those caring for Alzheimer’s patients, their constant need for attention, especially if they are juggling jobs and children, may face caregiver stress or overload. Not only from the Alzheimer’s behaviors, but from the sense of loss. Frustration builds.
“Families see their mother go from someone fixing the Thanksgiving dinner to someone running around outside naked,” Bolling says. “It’s very hard to accept the process of decline.”
Stress builds. Caregivers should be careful that anxiety and depression doesn’t cause their own health to go downhill. It’s not unusual to hear that the caregiver has gone first.
Bolling’s father requires assistance morning and night. She has hired a lady to help watch him, who also helps with the cooking and cleaning and household chores.
“I can’t do it by myself,” she says.
Private personal sitters or home health care services can help the caregiver. Contact the Alzheimer’s Association or your local Area Agency on Aging to see if there might be any respite groups in your area. These can offer a few hours of “respite” during the week. You may need to call on an assisted care facility.
The last option for many is a nursing home. Daviess County Nursing and Rehab has a dedicated Alzheimer facility. Its maximum capacity is 16.
“The person they’ve married is not that person anymore,” Bolling says. “They thought they would spend their golden years traveling, instead they’re visiting them in a nursing home. They don’t get it. None of us do.”

Alzheimer’s Unit
Sierra Jones is the MDS coordinator at Daviess County Nursing and Rehab. As an MDS nurse, she completes the Resident Assessment Instrument, a detailed assessment done at least quarterly on every nursing home resident. The MDS nurse is also usually responsible to coordinate the completion of the care plans for the resident based on the results of the assessment.
Jones also has a family member with Alzheimer’s, her husband’s grandmother.
“Her daughters had been caring for her, but her condition declined, and she is now in the nursing home,” Jones says.
The Alzheimer’s unit at the Rehab is a dedicated area in a separated part of the building.
Usually, there are two CNAs during the day and one CNA during the night shift. Either a medications technician or a charge nurse passes out the medications.
“Everyone working in the Alzheimer’s Unit is trained to know how to care for the Alzheimer’s patient,” Jones says. “The staff is consistent. The patients do better with familiar faces.”

Enter the gray area
The number of women in the Alzheimer’s unit far outweighs the men. This is generally attributed to the fact that women outlive men.
During a visit to the unit, everyone is quiet and seems calm. Jones assures that this is not always the case.
“They can get really angry,” Jones says. “Over about anything. They can hit. They get confused. They twist words and say things they don’t mean.”
Dementia care, Jones says, is as much art as science; it’s a difficult dance and nobody knows all the right moves.

Tactics
It may be difficult to visit a loved one with Alzheimer’s. It’s hard to know how to talk to the ‘new’ person, hard to know how to act. But the opportunity to socialize can have many health benefits and is encouraged.
Saying goodbye to an Alzheimer’s patient can be especially difficult.
Generally, residents in a memory care facility are more confused later in the day.
“This is called ‘sundowning,'” Jones says. “It’s not always a good idea to visit in the evening. The residents are beginning to tire, and they want to ‘go home.'”
One lady in the Alzheimer’s group in the unit has a doll that she talks to as though it were a child. Others recall episodes of their history and repeat it again and again as though stuck in a time warp. There is both nightmare and hell with this disease.
“Years ago, people with Alzheimer’s were put in a padded cell and called crazy,” Jones says. “In the Alzheimer’s unit, they are monitored constantly; they’re safe and cared for.”
A full spectrum of visitors come and go at the unit. There are those who never come to see their loved ones because they just can’t bear it. And there are those who are deeply involved.
For family and loved ones, it’s bittersweet…between hanging on and letting go.
“It’s a horrible disease,” Jones says. “And it lasts forever. It just goes on and on.”

Memory Keepers
Due to the number of people coping with Alzheimer, it is not surprising perhaps that Memory Keepers, a program sponsored by the Daviess County Library has proved one of the most popular events held at the Rehab.
“We have a great turnout,” says Jones. “People from the community bring their loved ones out. If you have any interest at all, you need to come out.”

For better, for worse, in sickness and in health….
Louis Bussjaeger, 78, has been a resident at Daviess County Nursing and Rehab for 16 years.
His wife Carolee began to see signs that things were not as they should be with Louis in the year 2000.
Louis taught at a college and was involved in research. At heart, he was a true naturalist.
“He loved to go camping and canoeing,” says Carolee. “We met at college. He wanted me to go bird watching with him.”

Even though there were ‘signs’ of confusion and fading memory in later years, Louis was proud and wouldn’t go in for any kind of testing.
And then an incident occurred that told them both things were going wrong. Louis loved to coach soccer. In 2003, they went out to paint lines on the soccer fields. Louis couldn’t remember how the markings should go. He agreed to see a neurologist.

There was a brain scan that revealed ‘holes in his brain’ and there were also a series of intelligence tests. The neurologist began tracking Louis during each visit to his office. Every week the doctor would ask Louis a series of questions — what year is this? where are you? that sort of thing.
Louis managed to cover up his fading memory from the neurologist for quite some time.
“At one point, before he went into nursing care, my daughter went with us to see the neurologist,” recalls Carolee. “It was mid August. Louis told the neurologist it was winter time. Even though it was green outside, he insisted it was wintertime. After we left the office, my daughter told me Louis had been looking at a magazine with a cover featuring Christmas. I came to realize that he functioned a long time by picking up environmental clues, before we were aware of the extent of his problems.”

Then Louis had a psychotic episode. Things changed quickly. The neurologist wanted him to go to a nursing home.
The first experience with a nursing home wasn’t good.
“The staff complained that Louis was running things,” Carolee recalled. “I told them, so what, he’s done that all his life. It led to a confrontation.”
Next stop for Louis was the psychiatric ward in a local hospital. When it came time for his dismissal, they suggested Carolee look into the Rehab at Gallatin. It was a 60-mile drive, but Carolee signed him in.

“At that point he was still fairly functional,” she says. “For the next three or four years he was in the memory care unit.”
Louis shared all kinds of stories with the staff at the Rehab; he lectured; he graded their tests; he continued to live the years when he was a college professor.
“But over time, he lost the ability to talk and function and eventually he was moved into a full-care unit,” Carolee says. “He’s at a point now he can’t stand on his own. He doesn’t respond to anything. He eats, sleeps, breathes, but he’s unaware of anything going on around him.”
Some people with Alzheimer’s become physically violent towards the end. But Louis never has. He has also lived much longer than the average 10 years after diagnosis of the disease. Like so many aspects of Alzheimer’s, the ‘why’ of these differences from person to person is not understood.
“It’s a tough situation and there are no good answers,” says Carolee.

Without long-term health insurance, the Bussjaeger’s have “spent down” funds to qualify for Medicaid.
She says if she could wish for one thing, it would be financial help for families who have to deal with people who have Alzheimer’s.
“I am 77, theoretically retired at 65,” she says. “Louis’ retirement has been eaten away with nursing home expenses. He’s on Medicaid now. There’s not enough in my retirement to sustain me for more than a year if I quit working.”

Carolee continues to visit Louis when she can, but she has to work full-time to make up for the difference in the Social Security she receives and the bills she has to pay.
Carolee says Louis was always a generous man, anything anybody needed, he’d do it. She feels blessed to have spent the past 50 years with him.
“It’s a challenge, but I married him for better or worse,” Carolee says. “As long as he’s alive, I’ll stick by him.”