Coping with Dementia

It all began with my aunt continually misplacing her car keys. When I first began to observe signs of forgetfulness in my aunt, I was amused. As it became an every day occurrence, my amusement quickly turned to concern. I began to wonder if my aunt could be in the early stages of Alzheimer's disease. Recognizing signs of dementia in her, I took on the roll of caregiver. With the help of family members and others I cared for my aunt until it became necessary to place her in an assisted living home. I fumbled through those years, accomplishing some great tasks and making some great mistakes. I grumbled and complained but I am grateful that I got the chance to get to know and love my aunt better. Through the years I had learned many things from this former schoolteacher. The most important thing she taught me, however, without even knowing it, was patience. Out of necessity I learned to slow down. There is no such thing as "hurry up" when taking care of an Alzheimer's patient.

An early sign of Alzheimer's disease is a decreased ability to perform complex tasks such as balancing a checkbook. When I looked at my aunt's check register, I discovered that she was paying bills with two different checking accounts, one of which had even been closed. Checks were written out of order or not recorded at all. Some of her bills were not getting paid and others were paid more than once. It took a while to sort out the mess. I decided that paying bills would be a monthly chore for us. I had her phone and utility bills paid automatically by her bank. Her other bills I had sent to my address. I would bring them with me and help her write out the checks for payment. My aunt could feel as if she were still in charge of her finances. This was important to one who had been independent all of her adult life.

As I took a closer look at my aunt's living situation, it became obvious that I needed to check up on her more than just once a month to pay her bills. Thankfully my sister shared some of the duties with me. Working together we were able to keep my aunt in her own home for a little while longer.

Although she wouldn't venture too far from home, my aunt was still driving at this time. She made the weekly trip to her hairdresser who was just down the road; and she drove to the grocery store and bank. One day I discovered that my aunt did not remember the way to her sister's apartment; a trip she had made countless times over the years. I found the directions to the apartment written on a piece of paper in her car. The realization that my aunt was forgetting something that had been so automatic for her presented a new problem for me. How do I get my aunt to relinquish her car keys and stop driving? Asking her to stop driving was asking her to give up her independence. A small but scary incident helped convince my aunt to stop driving.

One day as she was backing out of her driveway my aunt put her foot on the accelerator instead of the brake and ended up in her neighbors' front yard. The neighbors, horrified, rushed out of their house and suggested that it might be time for her to stop driving. Sufficiently scared, my aunt agreed that they were probably right. She promised them and me that she wouldn't drive. A promise, however, doesn't mean much to someone with memory loss. After learning from her neighbors that my aunt was still driving, my sister and I took away her car keys and became her chauffeurs. Her car remained in her driveway. This was a comfort to her even though she wasn't driving. At least she could pretend.

There were times when I wondered if my aunt was having vivid dreams or perhaps hallucinating. She would tell me humorous and outrageous stories in all seriousness. In sharing these events, I do not mean to laugh at my aunt. Alzheimer's disease is no laughing matter. However, as a caregiver, I needed to have a sense of humor. In my aunt's own words, "If you don't laugh you are going to die crying."

My aunt told me about visits from men she had known in the past. She relayed one time that a man she had gone to college with had visited her twice. His visits lasted about two hours each time and although she couldn't recall their conversations, she did remember that he was probably of Italian descent and a sloppy dresser.

Because she was not driving anymore, my aunt began taking long walks. One sunny, wintry day my aunt set out on one of her walks. Instead of her usual route, however, she went a new way and was walking further and further from her home. A young woman noticed her and sensed that something wasn't right. She stopped and offered my aunt a ride, who by this time was lost and very confused and very grateful for the ride. In her confusion, my aunt was unable to tell the woman where she lived, so the woman took her to the police station. The only thing my aunt could remember by then was her neighbors' name. They were called and came to her rescue.

As time went on I decided that my aunt needed more supervision. I hired a housekeeper and another caregiver. My hope was that my aunt would like the additional company and attention. Unfortunately this was not to be the case. She insisted that she could do her own cleaning; and besides how dirty could one person get a house? As for the additional caregiver, my aunt did not like a stranger coming into her house. I tried to be creative in getting her to accept the help but she was even more creative. One day my aunt told the caregiver that her parents had just died and that she, my aunt, was in mourning and therefore the caregiver should go home. Other times she would politely, but firmly, tell the caregiver to go home and get "a real job." With persistence, my aunt was persuaded to allow these caregivers into her home, even if it were only for an hour or two.

By this time my aunt could not fix even the simplest of foods for herself. She forgot how to prepare a can of soup and one day I found her eating the soup directly from the can. I ordered Meals on Wheels for her, but instead of eating them at noon when they were delivered, she would put them in the refrigerator to have later in the day. If she remembered that the meals were in the refrigerator my aunt would try and warm them up on top of her stove. Naturally she would forget about the food on the stove and more often than not the meals burned. Since this presented a fire hazard, I found it necessary to shut off the gas supply to her stove.

The more confused my aunt became, the more I was concerned for her safety. My small team of caregivers, which eventually numbered five, could not handle the tasks of caring for her anymore. My aunt needed someone watching over her 24 hours a day. My sister and I had been discussing alternative living situations with my aunt for several months but naturally we always met with resistance on her part. My aunt began wandering outdoors more and more during the winter months. The time had come for us to place her in an assisted living home.

We tried to prepare my aunt for the move as much as possible. With her memory loss, however, this was next to impossible. Moving day was a family affair and no one was looking forward to it. We had to get my aunt away from her home, pack her clothes and move her belongings in a few hours. My oldest sister and her husband took my aunt out to lunch. The rest of the crew emptied drawers, chose furniture and clothes and moved them into her new one room apartment. When my aunt arrived to see her new home, I was overcome with feelings of guilt, regret, sadness and confusion. It was extremely difficult for me to leave her there but the staff was helpful and distracted her while I quietly departed.

In the eighteen months that my aunt lived in the assisted living facility, she never really adjusted as I had hoped she would. She always wanted to go home. Some days she would wait patiently in the lobby of the facility with her coat on waiting for a bus to take her home. Her health deteriorated and she couldn't remain at the assisted living level. She was moved into a nursing home where she lived until her death two years later. I visited her in the nursing home and was always amazed by her spirit, her gratitude for small things, like visits from her family, and her sense of humor.