Alzheimer's Disease: One Woman's Story

Janet and her husband, John, had noticed that she was having difficulty with activities that would previously have been simple for her. When trying to make change for a customer at the business they owned, Janet became confused, despite repeated attempts. John helped her resolve the problem with the customer but came to the realization that something was wrong.

"I had opened the business after I retired from the army," he said. "Janet liked helping me with it and she was good at it, although she had never worked outside the home before that. She raised our two children practically by herself because I was always working. She would mow the lawn and work as hard as any man. I really depended on her, and she took care of me."

After the incident at the business, John took his wife to the hospital to be evaluated. The testing required that Janet give the date, time, her location, repeat three facts about an object and perform other simple cognitive functions. She scored 18 out of a possible 30. The second test was given four months ago. She had lost three points.

John said he goes for himself, although symptoms are still in mild to moderate stages. He is confident that he will need the group even more as time goes by. "Janet is at her best in a social setting. She is able to compensate and function at a level where most people are unaware that she is having any difficulty," he said. "She will tell you that there is nothing wrong with her and that other people forget to use a coffee filter sometimes, or put creamer in the filter rather than coffee."

The family has determined to use the word "dementia" to discuss Janet's condition. "Alzheimer's Disease" seems to upset her. One of the most difficult life-changes the couple has been forced to make was when Janet stopped driving. She had gone through a serious accident that was ruled her fault.

"She didn't give us a hard time about it," John said. "She probably felt she wasn't as competent. We were afraid she was going to get lost or cause someone to be badly hurt." The couple's daughter, Margaret, said she was aware of the changes in her mother much earlier than her father. "Mother lost her younger brother in January 2000," Margaret said.

"There was a 16-year age difference between them. It was more a mother-son relationship than it was a sibling relationship. When he died we never really got the old mother back. We lose a little bit of her every day. When I can catch a glimpse of her, who she really was, I'm elated. It's just wonderful. She still has a great sense of humor. We giggled and laughed the other day going to the doctor. It was so healing for me. The problem is that it changes daily - sometimes minute to minute." Paula said there are times when her mother is upset with her even when she has done nothing to provoke the anger.

"We've learned not to argue with her," she said. "It does no good. Even if you convince her of something at one point, 15 minutes later she'll be back where she started. When she has visitors, she may not be able to tell you who they were. "

Janet often gets agitated and flustered, John said. She was to go with her daughter recently to see a relative's new baby. She got up in an emotional state, complaining about her knee and saying she needed to call and cancel the trip. She couldn't operate the phone to make the call.
John said he hugs and "pets" her at these times like he would a child. His soothing words and touch seem to calm Janet.

"The dynamic of the family has changed dramatically," said Margaret. "Mother was the center of everything. She kept us all updated on each other and told us what was going on and what our role was to be in it. I seldom saw her cry in my life. She was strong - stoic. She took care of her mother, took care of Daddy and she took care of us. Only recently has Daddy learned to cook." John has a lady who comes in to do the cleaning.

"But I have learned to cook a pot of beans and a pot of rice, then I can them," he said. "That way I have meals made up for several days. When it's meal-time I just open a jar and re-heat it. It makes it easier for me. We are doing everything we can to keep Janet at home for as long as we can."

The Alzheimer's support group is led by nurses from Intrepid Home Health Care. Each month they schedule a speaker on topics relating to the disease. A pharmacist may talk about medications and their uses, or a psychiatrist may speak about behavioral problems associated with each stage of the disease.

"We are there to talk to the families and provide resources they may need," said Belinda Walker, patient care director. "This support group gives caregivers a way to get out and share stories. They ask questions and gain reassurance that they are handling things in the best way possible."

"I would advise them to stay busy," said William DeClerque, a clinical assistant. "The patient needs to constantly stimulate her brain through memorization, reading and puzzles. You want to reorient the patient with time, place, dates, who the president is. You want to do this every day. Some patients progress quickly, some more slowly."

John said his motivation in sharing his and Janet's story is to help others who are dealing with the devastating affects of Alzheimer's disease. He needs their support, as they may need his.