ABOUT ALZHEIMER DISEASE

When I think of my childhood, my most vivid memories are those when I was very young before I started school. It was a time when my world was huge and anything could happen. We lived in the city of South Houston, a suburb of Houston, Texas. My mother had backyard chickens behind our 1930’s A-frame home. We didn’t have television or air conditioning. Instead there was an attic fan with all the windows open on hot summer days. Most of our time was spent outside playing in the shade with a water hose in the afternoon. My mother’s two-fold purpose was to keep my brother and me cool and water the lawn at the same time. Games evolved from imaginations. The rules often changed when my brother was losing. He was two years older so, in the end, he got away with his lack of ethics.

It was that way with my mother when her mental state declined into the latter stages of Alzheimer disease. But instead of knowing they were memories, she truly was living in the past. She had feared being stricken by the disease since her sister, Ruby, 17 years her senior, had died from it in a nursing home. Mom said she was unrecognizable in the end. “A shell of emptiness,” is how she explained what she saw when she visited her the last time.

Despite her efforts of not using deodorant with aluminum chlorohydrate antiperspirant which, at the time, was considered a contributing factor to the disease, and avoiding any other contributors she could find in her research, she eventually became a victim as well. In the beginning I thought she was overreacting to lapses of memory. After all everyone forgets things from time to time. I really didn’t believe she was falling ill. But she knew what I didn’t and I know it tortured her deep inside. Still she was a woman with a wonderful sense of humor who would not share her dread often.

The day came when it all came to the surface and I knew beyond a doubt she couldn’t remain independent. We were leaving my son’s home in Mesquite, Texas, a suburb of Dallas, which was 80 miles from Tyler, Texas where we both lived. I was behind her in my vehicle as we approached the I-20 overpass. She got confused at the intersection. Instead of proceeding straight ahead and going over the interstate in the proper lane, she suddenly turned and went into oncoming traffic on the other side of the median. Needless to say I was panicking. The horns from the other vehicles and their gestures for her to backup eventually made her realize her mistake. She found her way back to the proper lane to cross over. As we made it to the other side, I honked and motioned for her to pull over into the gas station on the frontage road. She did and I breathed again. I told her I would stay behind her all the way to Tyler. Despite my nervousness the rest of the trip home was uneventful.

After visiting with her, I went to my house and immediately called my son. I told him it was not safe for her to drive to Dallas again. He agreed. He was 31 and had a wife and 4 children at home, but he decided to convince her to sell her home and 5 acres and move in with them. He worked from home and would be able to take care of her easier than any other family member including me. I was a full time nurse working 12 hour shifts at a hospital.

Just a few months after her moving in, my son suffered a heart attack and died on a Friday evening. Heart disease runs rampant in my family. My dad had died, at the age of 44, from a heart attack. My brother would die, 12 years into the future, at age 61. I sit here writing this with 2 stents in my heart placed 9 years ago.

After his death Scott’s wife told my brother and me she would not be able to take care of our mother and we understood. My brother had spent much time in other states and had not been able to see my mother as much as he’d wanted to over the years. At the time he was living in Kansas and made the drive to take her back home to Wichita with him. She stayed with him and his wife until one day she started walking back to Texas, and was found 7 miles from their home. The strain over her care overcame his wife and she left and filed for a divorce. My brother put my mother in a nursing home, but was not at all happy about the care she was getting. I decided to find the proper place in Tyler for her and made the trip to Kansas.

She had changed even more than I could have imagined. Her body was stooped over and frail. She hadn’t said much when I arrived at his apartment and she looked reluctant to go with me until she understood we were going back to Tyler. Then she was ready to go and took my hand. On the trip back, she asked me every few minutes what I did for a living. My answer was the same every time she asked. I was a nurse and she had been to my graduation. We stopped once at a restaurant to eat somewhere near the Oklahoma border. I learned then that she could not feed herself. As I started feeding her, tears began to roll down my cheeks.

I had already made arrangements with a nursing home which cared for Alzheimer patients in Tyler. She spent the night with me when we arrived at my home. I took her there the next day. I stayed most of the day putting up pictures of family and trying to make her room at least a little like home.

I was still working 12 hours shifts on hospital floors. But I had started working for an agency instead of on staff. I worked at Tyler hospitals as well as nearby cities within a reasonable distance from home. I needed the flexibility of schedule, to pick when and where I would work, so I could be there for her as often as needed. That included making sure I could be there to feed her at least a few times a week and pick up her laundry since I wanted to make sure her clothes didn’t disappear with the laundry service there. I also wanted to make sure she got out of the nursing home once a week by taking her on a weekly trip to Walmart.

On one of those days, as we were leaving the nursing home, I was holding her hand and she fell onto her left hip. I had not been able to stop the fall. I was devastated. I stayed with her in the hospital, through the surgery and hospital stay, until she was able to go back to the nursing home. Once she was back I made daily visits to check on her progress.

Each day I arrived at the nursing home, I wondered who she would think I was. Often it was my sister, Linda, who had passed away from non-Hodgkins lymphoma the year before, in 2002. She had fought the battle more than 2 years. She had been diagnosed soon after my son died. I let her believe I was my sister. I couldn’t bear to tell her she was gone. There was no point to it. If I had then I would have had to break her heart over and over because she wouldn’t have remembered from day to day.

She was sitting outside in her wheelchair one day, near the entrance in the shade, when I walked toward her and sat down on a park bench. Her eyes lit up in a way I hadn’t seen before. I thought, “Uh-oh, who am I?”

“Hey! How are the wedding plans?,” she asked.

“Wedding plans?,” I asked. I was hoping for a clue.

“Yes, you and Oscar.” She gave me the clue. She was talking about my aunt Mae who was  5 years her senior. If my calculations were right, my mom must have been thinking she was 17 years old.

“Oh, they are going fine!” I tried to sound enthusiastic.

Then she got her famous sheepish grin when she was up to mischief. She leaned over in her wheelchair and took my hand.

“Can I ask you a question?” She sounded like a child when she asked.

“Sure,” I said, while wondering what in the world she would say.

“Are you pregnant?” She giggled. I was floored. I burst out laughing. My aunt was one of the most religious women I’d ever known but I know she would have laughed, too.

“No, of course not!” I continued to laugh. Then I said, “Are you?”

She replied by shaking her head to gesture “No” and we both laughed until we nearly cried. It was an endearing moment I will carry always.

Three months after her surgery, I was working in Athens, Texas at a hospital there about 30 minutes from the nursing home. I got a call from the nurse at the nursing home. When I was called to the nurses station, I knew in my heart what I was about to hear on the phone.

“Is your mother a DNR?” The nurse was asking if she was a “Do Not Resuscitate.” Which, in medical terms, means no attempt to revive when a person stops breathing.

I told her simply, “Yes.” I hung up the phone and through tears asked if the charge nurse could split up my patients with the rest of the staff. I gave report to each nurse relieving me, and made my way to the car. My mind flooded with memories on the drive to the nursing home.

When I got there the nurse told me my mom had been with physical therapy at the ballet bar on the wall, doing leg raises, as they were joking with her. She started laughing and suddenly fell to the floor, dying before she hit the ground. She literally died laughing. I thought to myself it was fitting for her.

I don’t fear or worry about Alzheimer disease for myself today. I told my daughter not long ago, if I do end up with the disease I knew she was strong enough to make it through making sure I was cared for properly like I was with my mom. I don’t know if there will be a truly effective treatment someday in the near future but I hope so.

https://alzfdn.org/

 

© copyright 2017……Phyllis Rogers

 

 

 

 

 

 

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