In January 1997, I became my mother's power of attorney. We had reached the point now where she could not make decisions for herself. I was in complete control of my mother's life. Her well being was my responsibility. Even though my brother was there to help, everything depended on my decisions. This was almost an overwhelming weight to carry. Raising children can be difficult, physically and emotionally, but to be responsible for a parent is, to say the least, humbling.
January was also the month all hell broke loose. After the decision to move her, she got much worse. She developed a fear of being evicted from her house. She became more paranoid telling me her house was filled with strange people all the time. It was almost impossible for her to distinguish between reality and fantasy. I decided the plan to move her had to be done as soon as possible. it was important to get her in a controlled environment.
We bought a mobile home in January. We were ready to move it when the rains started and the ground became soft and made it impossible to move. Another obstacle in our way was negotiationg with the county. There were laws that had to be met before it was moved. I know it sounds like I gave the doctors a rough time for not recognizing my mother's illness sooner, but that was nothing compared to the inefficiency of the government. We applied for a hardship septic tank permit. This would allow my mom's mobile home to use my brother's septic tank. Electricity, water, and gas had to be made available. We applied for permits, filled out the paperwork, and began a struggle with the local bureaucracy. After two months of frustration and threats, we finally had mom settled on my brother's property.
Having her near the family seemed to help for awhile. We also felt more comfortable having her there, but as time passed we noticed her paranoia creeping back in. I received phone calls from my mother during the day. She'd tell me she was her at brother's house in Kentucky and was ready to come home. I would explain to her that she was already home. It took a long time but she would finally agree. Five minutes later the phone would ring again and it would be her asking me to come and get her again. She also started asking me to take her home. Home to her meant where her mother lived, but her mother had been dead for 35 years. It was getting to the point where we were having trouble just keeping her in the house. I knew we needed help, someone who knew what they were doing and not someone who would take our money and send us home feeling like it was our fault for bringing her there in the first place.
My wife's niece told her about a special unit in a nearby hostpital that worked with behavioral problems like mom was having. In August, I made an appointment at the Medical Center. It was a eyar since I had become aware of the first symptoms, but it seemed like a lifetime. The Medical Center admitted my mother and kept her for two weeks for evaluation. It was determined that she was in the first stages of Alzheimer's and they recommended she be admitted to a 24 hour care facility, such as home care. The Medical Center personnel were very professional. They listened to our concerns and fears. I cannot praise them enough. With their help we were able to make the right decisions and feel better about the ones we had made.
I'd read a little about Alzheimer's before my mom was diagnosed with it. I had even joked about it, but I really didn't understand what it was. I knew my uncle had suffered with it a few years earlier. I started to read about this disease, and what I learned made me realize there would be harder times to come. There is no cure for Alzheimer's. The patient slowly deteriorates mentally and physically. They lose their short term memory first and then the long term memory follows. If the person is in good health, the disease can last a long time. My mother was in good health.
Even though the Medical Center recommended a 24 hour care facility, my brother and I decided to try and take care of her ourselves. At least until she became unmanageable. We put a camera in her home that would monitor her movements. We installed door alarms that would sound every time she tried to leave. From that day in August her privacy was a thing of the past. My mother would be monitored 24 hours a day.
In October of 1997, I noticed another symptom appear. My mother became emotionless. This terrible illness was taking her ability to feel. This thief was stealing my mother a little each day. She never cried anymore and she seldom laughed. She used to talk about my father, now she barely spoke his name. She used to sing as she went about her work, now she just sat and stared. In the past, I could never leave her house without a kiss, now she never made the effort.
Another symptom she developed was walking. She would get up all hours of the night, fully dressed and ready to leave, even though she had no idea where she was going. Most of the time, she just wanted to go home to her mother. I kept thinking I would wake and this would all be a dream, but I knew that would never happen. From the literature I read, I knew it was going to get much worse.
I was spending three nights a week at my mothers house. The stress on me was beginning to show. When I was away from her, I felt guilty, and when I was with her I couldn't wait to get away. Emotionally, I was becoming exhausted.
On a typical night I would get to my mother's place at about 5 o'clock in the afternoon. From the time I got there until the time I left, it became a constant barrage of questions. Where is mom? Who lives next door? She would ask these questions over and over again. After going to bed, I would wake up to noises in the living room. I would find mom there, fully dressed and ready to leave. I would ask her where she was going. She thought it was morning, and then she would go back to bed, but an hour later she'd be up again. Finally, I gave up trying to sleep at all.
One night we were watching television, or should I say I was watching television. My mother just stared at the screen. At 9 o'clock she prepared for bed. After she had her night gown on she came over and sat down beside me and said "honey, don't be too long," kissed me on the cheek and went to bed. This seemed odd because she rarely showed emotion anymore. Later when I went to bed, I stopped by her room. I found one side of her bed turned down. I realized she had confused me for my father. A lump caught in my throat when I realized how far on this journey we had come, and how much this disease was in control.
As the weeks went by I became more aware of her physical appearance. She was used to walking a mile every day, but by November, she would tire after walking around the yard. Her shoulders began to slump. Her arms would swing together when she walked. The lines on her face became deeper. Her eating patterns began to change. She couldn't remember when she ate last, so she at all the time, and that made her weight balloon. Her ability to move around her mobile home was also becoming limited.
The nights I was spending with her started getting worse, and I was beginning to dread them. To illustrate how a typical night was at her place, I will print a page from the journal I kept during her sickness. The date was October 1997. "I spent last night with mom. She now has a difficult time keeping her concentration from minute to minute. She is constantly eating. I believe she has gained ten poinds in the last month. While I was asleep, the alarm went off again. It was about 10:30 PM and I was right up to find her fully dressed going out the door. When I asked her where she was going, she acted frightened and said there was someone in the house besides her, and she was going next door to get help. I got her back inside and tried to convince her that the other person was me. She went back to bed, but about an hour later she was up again. She didn't get much sleep, I'm sure I didn't. When I sleep at her place, I keep the door slightly open with a chair propped against it. I am afraid when she wakes up at night, she might confuse me for an intruder, and hurt me while I am asleep. It upsets me to feel this way about my mother. This morning the van arrived to take her to the Medical Center where she goes every Tuesday and Thursday to be with the other Alheimer's patients. This allows the doctors to evaluate her progress or decline. So far there hasn't been much progress. When she got back, we went to yard sales. She got tired, she's been getting tired lately. I don't know if it is because of her weight or the fact that she is getting weaker."
There are many support groups available to help the families of Alzheimer's patients. I decided not to be involved with them. I have always been a private person, and I never have fit in well with groups. For those who need the support of others, I believe it can help very much. Don't wait for the final stages of this disease when it has stolen as much from you as it has your loved one. Even if it's just a friend to talk to. It is not an admission of failure on your part. I had my wife, my friend. She was the best support group I could have. If I needed someone to talk to she was there, and if I needed to be alone, she allowed me my solitude. My wife was with me through it all and it made our love stronger.
Don't try and face this disease alone. You will lose. Always have someone for support. Someone you can lean on when the times get rough and believe me, they will. Most of the time, it's difficult for a man to deal with his emotions. Facing such a depressing disease can rob you of your feelings. It can suck the life out of you. I did not let this happen to me. With help from my wife, I was strong enough to face this disease with courage. I did not conquer it, but I did not let it conquer me.
Until November of 1997, my mother tried to hide her unusual behavior around others. Often we'd tell relatives and friends about her actions, but after talking to her they found it hard to believe us. She put up a good front, but as time passed it became harder for her to keep up the act. When she was around people, she now remained silent. Finally, she regressed inside her mobile home not wanting visitors, or even to go outside. I knew the next decision would be the hardest of my life, and it was.
