“In Alzheimer’s the mind dies first: names, dates, places – the interior scrapbook of an entire life – fade into mists of non-recognition.” Mark Clark
At the end of my Junior year in college I was working two jobs while taking 21 college credit hours. It was difficult to put myself through school and try and feed myself at the same time but it was doable thanks to the Anderson Aldi, Ramen noodles and of course, my parents. Throughout my college career I had to take a few semesters off so that I could afford to finish school. So, when I saw a job posting for live-in care for an elderly woman I jumped at the chance. I thought this opportunity might make finishing my Senior year a little more manageable – in the very least, it would be better financially.
I had recently gone through a tragic ordeal of losing someone very special to me and I was suffering from depression and had been diagnosed with Post Traumatic Stress Disorder. But I was headstrong and stubborn. Instead of taking time off, I pushed through. School had been important to me since I was young and my goal of getting a college diploma was in full view. A live-in opportunity looked much more appealing than serving rude customers who never tipped more than two bucks at the local “Texas Roadhouse”, so I decided to call the number. A few days later I had an informal interview at a Wendy’s with the woman’s son. He explained that his family was divided on how to best care for their mother because she was physically healthy and wanted to stay in her home but she had recently been diagnosed with Alzheimer’s Disease. Her sons wanted someone to live with her and make sure she took her medications, ate healthy, drove her to her hair appointments, etc. I would get paid but I could also live in the apartment that was connected to her house for free. They thought this would be a good compromise because they didn’t want her to be alone and I thought it would be perfect for me because I would be far off campus which meant I had a great excuse to be a hermit which is what I needed at that time. I was excited that I could finish my academics off strong while helping someone else out at the same time. It was a win-win.
When I first met Dorothy, she thought I was one of her grandchildren. She hugged me like I was family and talked to me like she had known me my entire life. I could tell right away that it wasn’t just a grandmotherly love that she showed to me, it was the disease. Looking into her eyes, I could see that she wasn’t really looking at me. Something was blocking her from being able to recognize anyone. There was a misty haze that seemed to blanket her face. After meeting with Dorothy’s family and being questioned for a couple of hours, they seemed to be in agreement and I was hired.
It seems hard to believe now, why anyone would hire a college girl to be almost completely responsible for another human being. That’s a lot of faith to have in a stranger. But I was honored to take care of Dorothy. I loved her like my own family. As I moved my few belongings into the one bedroom, one bath apartment, I didn’t realize the weight of emotions the year would bring. At the time it just made sense to live with Dorothy. For that year, we needed each other.
I quickly got adjusted to my new class schedule, taking the last of my literature courses and writing what seemed to be a million papers while I planned breaks and lunches around when Dorothy would need me. I came home in between classes to check on her or make her a sandwich. I would always announce myself before walking into her house. It was very important that I constantly remind her who I was and why I was there. Most of the time, she would forget after a few minutes but I would remind her again because she would get confused or worried. We would sit down at her 1970’s kitchen table, eat and chat.
Every Sunday I took her to her hair appointments and then to lunch. I called it her “beauty queen” mornings. She seemed to like the drive and getting out of the house. After Ryan and I started dating, he would come up from St. Louis to visit on Saturdays and help me out with Dorothy. She liked riding in his new car with the sunroof down on the way there and there were times when I thought I saw her eyes light up a little bit. It was good to see glimpses of the woman she must have been before this terrifying disease took over her life. It was the highlight of my week to get some help and a wonderful reprieve from my “cave” living. She loved when I would play my guitar and sing and we would have long conversations about nothing. She would come in and make sure I was doing her laundry correctly and that I wasn’t using too much fabric softener. I would come back at bedtime and make sure she took her teeth out and brushed them. This weird routine of ours was a comfort to me. I liked being needed. I loved keeping busy and taking care of this woman who was starting to feel like a grandmother to me. I needed her company as much as she needed my watchful eye.
Most of the time she liked to sit in her comfy chair in the living room holding her crossword puzzle. She gazed at it like she knew she was supposed to be doing something but she couldn’t remember how to do it. She would sit like this for hours, staring at the page of words – her mind unable to even piece together a complete thought. She would often talk to herself in the mirror as if it was another person staring back at her. She didn’t recognize her own image. She would refer to the person in the mirror by another woman’s name and she did everything with her reflection. “We” need to go get our hair done or “we” just got finished getting ready for bed. It was almost as if she knew she recognized the person in the mirror but she wasn’t certain who it was – a long-lost friend, someone she trusted, a part of someone she once was? She wanted to remember the person in the mirror but this was the closest she could get and so her reflection became her best friend.
As the days went by, I started to realize things were getting worse. I walked in from classes one day to find her putting something blue in a bowl. I quickly grabbed it from her hands and told her in a voice usually reserved for babies and toddlers, that it wasn’t food and she shouldn’t eat it. She apparently had gotten into the dishwashing detergent from under the sink. I wasn’t sure if she had eaten it or not but I called her doctor anyway. She was fine but it scared me to think that a disease could attack your mind so terribly that not only do you forget who you are as well as the people you love, but you stop being able to feed or take care of yourself. It was awful to watch another human being have to go through such torture. After several months, Dorothy began to have hallucinations. She would talk with “people” and then get violent and shout at me to leave. I would find her huddled in a corner of her room, terrified and crying because she “saw men” in her home. I would feebly attempt to comfort her but I never felt like I could chase the demons far enough away. She was different after the hallucinations started.
It became increasingly hard to live with someone who didn’t live in my world anymore. As she descended into a dark place, so did I. My depression grew and I became increasingly more anti-social. I started to feel the pain of both of our worlds much too heavily.
There is a night that burns very vividly in my memory. I came in for my usual nighttime check and she was standing at the window by her front door. She was lost in her world and didn’t see or hear me. I called out her name and it startled her. She looked through me with milky blue eyes full of tears. I asked her what was wrong and she softly said, “They aren’t coming home.” I questioned who she was waiting for and she answered in a voice that trembled with hurt, “my family.” As we talked I realized she had been waiting all day for her husband and her children to get home from work and school. Her mind was making her live fifty years in the past but her body was there, with me in 2002. She didn’t understand why her family wasn’t coming. She felt abandoned and lonely. It made my heart ache to watch her fight a constant battle with her mind. I thought about what it must be like to wake up everyday and not know who you are, to only have scattered memories that cannot be trusted and to wonder who this stranger is who keeps coming and going. She was completely alone in this world – not physically but mentally. Her family loved her and wanted the best for her but she no longer knew who they were. It’s one of the most helpless feelings I’ve ever experienced.
Before my time living with Dorothy I had zero experience with Alzheimer’s and I definitely didn’t have any nursing credentials that would have caused anyone to want to hire me for something like this. But somehow, I was blessed to be a part of the last days of a woman’s life and it changed me forever. The day I said goodbye to her was difficult. She had no idea why a strange young woman was giving her a gift with tears in her eyes. She had no idea that I had lived with her for a year and took care of her personal and private needs. She had no memories of sitting in her living room while I played songs for her that made her smile. She didn’t know who I was from a stranger on the street but I hugged her anyway and told her I loved her. I thanked her for letting me stay in her home and for teaching me about selflessness and the value of life. As I drove out of her driveway for the last time and she waved to me from the screen door, I hoped in some corner of her mind she did know me and she remembered.
Several months after graduation I got a letter from her family informing me that Dorothy had passed. I think about her often and the effect she had on my life. I learned how important our memories are and how deep our need for human connection really is. I fear what would happen if I was separated from my loved ones by such a deep chasm…a disease that has no cure. What are we without our memories? What good are our bodies if we aren’t really here in this world anymore? Sometimes I feel that it wouldn’t be living to be alive but dead on the inside. Dorothy’s body was here, but her memories were scattered. I have never feared death but after living with Dorothy, I now have a fear of not dying – of not remembering my life. I cherish every moment all the more.
“You know, people get frustrated because their loved ones have Alzheimer’s. Oh, he doesn’t recognize me anymore. How can I recognize this person if they don’t recognize me? They’re not the same person. Well, they are the same person but they’ve got a brain disease. And it’s not their fault that they have this disease.”