In 1973 my father had a minor traffic accident. Visibility was poor do to light fog so everyone excepted his explanation that he did not remember seeing the other car. In the months following, there were several near misses. One day, my father's supervisor found Dad wandering around the factory. He could not find his workbench. Not sure what to do, the supervisor took Dad to see the personnel director, who happened to be our neighbor and friend.
Dad appeared normal but could offer no explanation for his actions. Ed, the personnel director said, "Ren, I need to update our records. How old are you? What is your address and and phone number? What is your wife's maiden name? What kind of car do you drive?" In each case Dad gave a prompt answer. Because Ed was a friend and neighbor, he knew the correct information and knew that each answer was wrong. My father could not remember those things. Rather than admit ignorance, he made an answer up.
At that time, few people had heard the word Alzheimer's Disease or Alzheimer's Dementia as it is officially known. Even our family doctor had to look it up when a specialist finally rendered the diagnosis. The biggest struggle was that no one knew about the disease or how to care for patients.
Fortunately the county nurse introduced my mother to the wife of another Alzheimer's patient. In desperation, they organized a mutual support group, and the women did their best to help each other. This group evolved into the Southeastern Wisconsin Chapter of the Alzheimer's Association. Fortunately as the disease became better known, the Alzheimer's Association was able to distribute more information and resources to families of Alzheimer's patients. Patient care and assistance to families gradually improved.
My mother explored many options including the VA hospital in Milwaukee. She was horrified in the late 1970's to learn that Alzheimer's patients were placed in the psychology ward. "But he's not crazy," my mother said. Fortunately, Alzheimer's Disease is progressive so my mother had relatively few problems caring for him at first. Fortunately neighbors and friends from church helped because it eventually became very difficult to care for my father. The county nurse, friends and neighbors did what they could, but eventually Mom paid a widow to help her a couple of hours each day. My mother cared for my father at home for 17 years until his death. Those with an interest in her struggles can read the book she wrote (Betty Conger, "You Forgot but I still Love you Reynold", available through Amazon or from this writer.)
The purpose of this article is not to sell books, but rather to discuss issues related to Alzheimer's Disease. The bigest problem is that people do not know how to relate to an Alzheimer's patient. Early in the progression if the disease, my father looked strong and healthy. He attended church and other functions just like everyone else except that he seldom talked. He could still talk, but seldom said much because he said, "I feel like such a dummy."
As the disease progressed, social graces disappeared. Friends continued to say, "Hello" to him, but soon learned not to shake his hand. If you did shake his hand, he would take your hand in his iron grip and smile. Then he would shake, and continue shaking as thought he had forgotten he was supposed to let go after two or three shakes. Mom had to keep him away from food in public. He would eat everything in sight, including food off of other people's plates. He would eat until he was sick.
Public bathrooms presented a challenge. At one picnic for retirees, Dad needed to use the bathroom. Mom pondered which would be worse, taking Dad into the woman's room or she entering the men's room with him. At that moment a vice president, who was aware of Dad's dementia, walked past and offered to assist Dad in the men's room.
Eventually my father's condition degenerated to the point where he was completely nonverbal, confined to a wheelchair and losing weight rapidly because, by then, he had forgotten how to eat.
People would make one of two mistakes. They might mistake him for a healthy, robust man and attempt to deal with him in a completely rational way. This was especially the case shortly after diagnosis when he looked healthy and robust. This embarrassed my father because he often did not know how to respond or how to act. He learned to fabricate information out of self defense. If he was asked to get ice cream out of the freezer in the basement, he might return with a screw driver or a hammer.
The other mistake was to treat him like a vegetable. Especially after he became trapped in the wheelchair, people became aware of the fact that he had a problem. Many people assumed he could not understand them. They began talking to others as though he were not there. If they talked to Dad at all, they talked down to him.
The fact of the matter is that there was nothing wrong with his hearing, and up to the end he could comprehend what was being said. In many cases, he may have had difficulty correlating what was said with current reality, especially if the conversation involved short term memory. While he might not remember his age or his address, he could remember the dog he had as a child. It appears that ignoring him completely also embarrassed him.
While there was much he could not comprehend, we can document the fact that he was usually aware of his surroundings. He would recognize his name and sometimes recognize the names of family members. When I would call him on the phone, he would whistle into the phone and point to my picture. When my brother called, he would point to my brother's picture. He did not remember enough to be functional, but he obviously remembered some things. He was severely disabled, but not a vegetable.
This problem of how to treat an Alzheimer's patient impacts both social interactions and patient care. Much of the problem with inadequate care relates to how the caretakers talk with the patient. No wonder some patients react violently to being ignored. Most of the poor care I am aware of is the result of poor interaction with the patient rather than deficiencies in the facilities.
My mother worked hard to care for the man she loved and told us it was worth it. Fortunately she had help. Now and then she needed a break to visit people or attend graduations and weddings. She was fortunate to find a facility with an Alzheimer's ward and professional care for the patients. Now and then she would place Dad in their care for a week or ten days of respite care.
Much will be written about facilities and the nature of care, but the primary factor is for people to treat Alzheimer's patients like humans. True, the memories are limited thus often limiting other bodily functions, but now and then they are able to dredge up scraps of memory. They are as human as any patient.