Alzheimer's Disease Awareness Month: One family reveals experiences
By ROWENA PLETT
Staff writer
(Note: Names have been changed in the following article to protect the privacy of the individuals involved.)
Although Alzheimer's is usually thought to afflict people over 65, it can affect those even younger.
Mary Johnson was at home one evening when the dreaded phone call came.
"Your mother has Alzheimer's," the doctor said.
Although not totally unexpected, the news was a shock. Mary didn't immediately call her father and tell him. She was afraid he would be too distraught.
Mary, a young wife and mother of two small children, didn't sleep at all that night. She cried a lot. She didn't want to talk to anybody. She just wanted to be left alone.
During the previous two years, Mary had done much research on the subject. She knew the disease is characterized by the progressive destruction of nerve cells in the brain. There is no cure.
Thousands of questions tormented Mary's mind as she contemplated the future. She had heard so many terrible stories about how Alzheimer's affects people and the impact it has on families and caregivers.
She worried most about her dad and how he would cope with the situation.
"If something happens to dad, could I have my mom here with me while I operate my daycare?" she wondered.
She didn't know how to break the news to her 52-year-old mother, Laura. She thought about the possibility of having to eventually place her mom in a nursing home. She wondered if her mom, a working woman until recently, would be able to get disability.
The family had suspected for some time that Laura had the dreaded disease.
About four years ago, she began to experience episodes of anger. She lashed out at her husband Albert for no reason at all, then drove off in her car. When she returned, she was fine.
Problems at work surfaced a few years later. Normally, Laura was extremely intelligent and very organized, and people looked up to her. She had been a Regent's Scholar in high school and graduated from high school and college with honors. Later, she taught math at a community college.
"Math was my thing," Laura said.
All of a sudden, she couldn't do her job very well.
Much of her work was done on computer, and she couldn't keep up. She found she couldn't do more than one thing at a time. She complained about being overwhelmed.
Mary conferred with her brother and father. They all agreed that something wasn't right. They talked to a doctor who suggested Laura undergo evaluation at Prairie View. She took a leave of absence from her job.
Case workers at Prairie View concluded Laura had "some depression." After further testing by a neurologist in Wichita, she was told she had a thyroid problem.
After two months, she went back to work. Then she began getting home late. Mary's dad would call her.
"Is your mom there?"
"No, she isn't," Mary would reply.
When Laura got home, she always had an explanation, but after several months, she finally acknowledged that she was getting lost.
Laura really got scared one time when she suddenly realized she was at home but didn't remember how she got there.
In another incident, Albert told Laura he was moving farm equipment down the road to another field. He asked her to come in a few minutes to pick him up. When she set out to get him, she got confused and wasn't sure where to go.
Then she was released from her job, but she did not understand the reason why.
Daughter Mary was doing research on the Internet. She learned about symptoms of Alzheimer's and about medications available to treat it. She contacted the Alzheimer's chapter in Wichita.
She found a list of 10 warning signs and realized her mother exhibited most of them. She called her father and told him she thought her mom had Alzheimer's. She told the family doctor the same thing.
Mary joined a support group on-line, where she could communicate with others dealing with the same situation.
"That support group was wonderful," she said.
Laura's family convinced her to see a doctor. After numerous blood tests and a spinal tap, the Alzheimer's diagnosis was made. Everyone was forced to face and accept the reality.
Coping with Alzheimer's
The family is learning how to cope with the situation.
Albert strives to make his wife's life as normal as possible. Family members are careful about how they talk to Laura because they don't want her to get upset. She retains a bright mind and understands conversation, so they know they have to be upfront with her.
She decided to stop driving after she narrowly escaped an accident. One day she showed up at Mary's house. She was so excited that she had driven over there all by herself.
Mary discreetly called her father and asked him to come over so he could make sure Laura got home safely. Laura left for home ahead of Albert. She failed to stop at a stop sign along a busy highway and almost caused a vehicle accident.
Mary suggested to her father that he take the keys away from her mother.
"Don't make me take the keys away from her," he said. "She would be hard to live with if I did that."
Instead, he talked to Laura and impressed upon her the risk of going off on her own. She decided she would not drive anymore.
One day Laura called her daughter.
"I don't have any control over my life," she complained. "I can't do anything."
She especially frets about not being able to remember certain things. She wants to remember but can't.
"I don't know, I can't remember," is her most frequent phrase.
However, her mind many times is lucid and her memory clear.
"My father has become a changed man," Mary said. "He is the person who has been most affected. He's become someone I never thought he was capable of becoming."
Mary said her father has always been a hard man who was taken up with his work. Now, he takes time to make his wife happy. If he's busy but she begins to get upset, he drops everything and takes her places. Sometimes he takes her shopping. Occasionally, she insists on buying something she already has at home, but that's okay with him.
Albert farms, tends cattle, and has a side business manufacturing hydraulic squeeze chutes. Now, in addition to all that, he helps Laura prepare meals, do laundry, and buy groceries. He does all the book work, which Laura used to do, and looks in on his elderly mother, who lives nearby.
"Albert cheers me on all the time. He takes care of me," Laura said.
To her delight, he recently bought her a new dinette set.
"I have developed a lot of respect and admiration for my dad," Mary said. "I worry about my dad more than my mom. It affects the caregiver so much more."
Mary took her mother shopping once a week for about a year. Now, Laura has settled into a routine. She spends her days watching TV and playing Scrabble with her mother-in-law. Sometimes, she plays by herself to keep her mind stimulated.
"She's very good at Scrabble," Mary said.
Laura likes to play with her grandchildren and play games on Internet sites. She also reads magazines and writes letters to relatives and friends. She enjoys family gatherings at her home.
Laura receives disability income, which is important to her. However, her health insurance premium recently was increased, and she worries about how to meet the added expense.
She keeps a notebook by the telephone and in her purse and writes everything down.
She is taking two medications: Excelon and Aricept. They have been shown to slow down the progression of Alzheimer's Disease.
Scientists are working on developing a vaccine which can prevent the build-up of amyloid proteins in the brain, one of the abnormalities which causes Alzheimer's.
"Normal brain matter is gray and dim, but a person with Alzheimer's has a very bright brain," Mary said. "It's like electricity firing but having no connections."
Mary's greatest fear is that the disease might be hereditary. She said she checked into her background and found out that a great-grandmother exhibited some of the symptoms of Alzheimer's and was admitted to a care home at an early age.
"All they knew back then was that she 'wasn't right in the head,'" Mary said.
Mary said it's important for people to keep in touch with her mother and treat her like a normal person. Mary's two young sons realize their grandmother doesn't think very well at times, but they love being around her. Friends take time to talk to her when they meet her in the store.
"I'm hoping that somewhere along the way, Alzheimer's can be taken care of better," Laura said.
Mary is cautiously optimistic.
"Mom sometimes worries that the medication isn't working, but we hope it keeps her at the level she is, so she can have a long life ahead of her," she said.
