Caring for an Alzheimer's patient: 'We just laugh at it because if we didn't, we'd cry'
By Jodi Mitchell
Turning on all the lights every 15 minutes, starting at 4 a.m. Making coffee with no filter in the pot. Asking the same question six times because the first answer is quickly forgotten. That's a typical day.
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"Now where are we going?"
"We're going to the store, Mom."
"Now where are we going?"
"We're going to the store, Mom."
"Oh! OK. . . . Whatever."
This, according to Lynne Richmond, describes a typical conversation between her and her mother, Bonnie Nordahl. Nordahl suffers from Alzheimer's disease. Richmond, along with her daughter, takes care of Nordahl.
Alzheimer's disease is a brain disorder that affects more than 4 million Americans, according to the web site www.alzheimers.com. The disorder starts out gradually with mild forgetfulness and eventually develops into the inability to reason, remember, imagine or learn.
The disease has several levels of severity.
Dr. Barry Riesberg developed the functional assessment staging (FAST) scale to measure the stages of Alzheimer's. The scale describes seven phases of the brain disorder. The first noticeable symptoms occur in stage 3, in which someone has problems in demanding job situations. The next stage, described as mild Alzheimer's, says that someone will need help with complicated tasks, such as handling finances. Stage 5, moderate Alzheimer's describes the sufferer as needing help in choosing proper clothing. Moderately severe Alzheimer's, stage 6, says that the individual will need help with basics such as dressing and bathing. The final stage, severe Alzheimer's, notes an individual's inability to speak more than a few words. The sufferer will have trouble walking, smiling or holding his or her head up.
Reisberg compares the decline in the Alzheimer's patient's abilities to the flip side of the progressive growth of an infant. Alzheimers.com says that as Alzheimer's victims' abilities decline, they will eventually be unable to recognize family, friends or even themselves. They will develop depression, paranoia or anxiety.
Nordahl, who currently lives with her daughter's family, is in the beginning phases of depression. Richmond believes that one day soon the family will have to turn her care over to a professional. Nordahl is to the point that she cannot offer any new information and she gets confused about the things she's doing, says Richmond.
She describes a typical day with her mother:
"She wakes up about 4 every morning and turns every light in the house on. She tries to make a pot of coffee, but usually forgets the filter. She comes into my room and stands over my bed until I wake up. I ask her what she's doing and she replies that she doesn't know.
"I tell her that it's too early to get up, and send her back to bed. I get up and turn of all the lights she has turned on and then I go back to bed. No more than 15 minutes later she's up and doing it all over again. This goes on about three or four times until I finally just get up with her.
"We make coffee and eat cereal for breakfast. She follows me around the house as I get ready for work. I turn the TV on and ask her if she wants to watch her favorite morning show, The Price Is Right, that she's watched for 20 years. She says, 'OK . . . whatever."
"My daughter stays at home while I'm at work all day. She takes her out for ice cream and to the post office. My mom doesn't like to sit for very long. She'll ask you the same thing time and time again. She doesn't remember that she's already asked the question six times before.
"It can be frustrating sometimes. It's kind of like having a child. You always have to have something for her to do so she feels important. You have to answer her millions of questions over and over again. You have to take her everywhere with you.
"Sometimes you just need some time alone, but you can't get any, because there she is. I'm lucky that I have other family members to spell me from time to time or I think I would lose it.
"In the evening when I get home from work, she's usually trying to help my daughter fix dinner. You'll tell her to turn the stove off, and she'll say, 'OK,' like she's going to do it, but she never does.
"She enjoys watching TV usually. She likes to watch Friends. She laughs and laughs like you don't expect an older person to. About 7:30 p.m. she'll ask if it's time for bed. I'll tell her "Not yet." A few minutes later she'll ask again. I don't want to put her to bed that early, or she'll get up at 2 or 3 in the morning. I make her wait until about 8:30 before I let her go to bed. Then again, at 4 in the morning she wakes me up."
Alzheimer's disease is the leading cause of age-related dementia, according to alzheimers.com. In the 1960s it was thought to be a rare disorder, but, today, it's estimated that about one in every 10 Americans age 65 or older has Alzheimer's. For those over age 85, one in every two Americans suffers the disease. Alzheimer's is so widespread that experts estimate that 14 million people suffer nationwide, and epidemiologists are calling Alzheimer's the "disease of the century." According to the web site, sufferers have included Winston Churchill, Rita Hayworth and Ronald Reagan.
Alzheimer's disease was discovered in 1906 by a German neurologist, Alois Alzheimer, according to alzheimers.com. He performed an autopsy on the brain of a woman and noticed that the brain cells were bunched in knots. Nerve cells in the brain are usually arranged in an orderly way. When they are affected by Alzheimer's, they become disorganized and stop working. Once enough cells have stopped working, part of the brain dies. Those cells are the ones in charge of memory, reasoning and the ability to take care of oneself.
When Alzheimer discovered the irregular brain cells in knots, he called them neurofibrillary tangles. Recently researchers have been studying a "tau" protein in the cerebrospinal fluid that the suspect has something to do with Alzheimer's, but they are still trying to make a clear connection.
Usually the brain disorder affects people older than 65, but in rare cases some people in their 40s and 50s have been diagnosed with Alzheimer's. Besides age, risk factors include a family history of Alzheimer's, and Down syndrome. Alzheimers.com says that detection of the disease can be difficult in a live person. Doctors diagnose with about 90 percent accuracy; they can't be 100 percent sure about a diagnosis until an autopsy is performed.
Scientists working on a cure have few options. Estrogen for women seems promising, but researchers are still examining that. Still, they predict that within the next decade they will have a cure for Alzheimer's, according to a video titled Alzheimer's Disease . . . Let's Talk About It, produced by GlaxoWellcome.
Alzheimers.com reveals that approximately $80 billion to $100 billion is spent every year on medical care and personal caretaking for the victims. Personal caretakers spend about $12,500, while nursing homes spend about $42,000. Statistics show that the average cost of caring for a person with Alzheimer's from diagnosis until death is $174,000.
Richmond says that her family will eventually have to put her mother into an assisted living situation, but she hasn't found a suitable one yet. She says it's getting harder and harder every day to take care of her mother.
When asked what she's done today, Nordahl chuckles, "I don't know." Her memory doesn't allow her to remember, one minute to the next. She is into the middle stages of Alzheimer's. She needs help dressing and bathing and needs to be reminded to eat and take her medication, according to Richmond.
"We just laugh about it because if we didn't, we'd cry," Richmond says.
According to the video, caregiving is an important and underappreciated
aspect of the disease. It can be extremely time-consuming, frustrating
and emotionally painful to take care of an Alzheimer's sufferer. Families
do their best with loved ones because they feel it's unfair to put them
into an assisted-living home. The video suggests that although it may
be difficult to place a loved one in the care of a stranger, it is usually
in the best interest of the patient.