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Memoirs of a CAREGIVERA Caregiver's Story of Assisting Four Family Members with Alzheimer's Disease
By CYNTHIA YOUNG
iUniverse, Inc.Copyright © 2013 Cynthia Young
All right reserved.
Chapter OneDiscover and Recover
Aunt Helen was a light-skinned, buxom redhead with a big personality (who reminded me of "Lucy") and a big pretty smile. She was a joyful person most of the time, but we all knew when she was serious about something and didn't want to play. Helen, nicknamed "Bootsie," was someone to be reckoned with and was a major player in her family of eight brothers and sisters (my maternal aunts and uncles). She was the fourth child of eight. Aunt Helen married young, and she and her husband seemed to be the ideal couple, at least from a child's perspective. They worked together and played together, but they did not have children together.
Some of my fondest childhood memories are of going to their house for Christmas. Aunt Helen loved everything that embodied Christmas and was like a kid in the candy store at Christmastime, putting up lots of lights and decorations and always having a gift for anyone who came through her door. She loved her candy, nuts, and pistachio ice cream—practically anything that was sweet—and you could always find dishes around the house filled with the cavity-building treats.
She was a jokester too! I remember a joke she pulled on her sisters. Auntie called her sisters one by one and said, "Girl, I just bought a four-carat ring!" The sisters were so excited that they rushed over to Aunt Helen's house to see the ring. For crying out loud, the ring had four miniature plastic carrots on it! My mother and her sisters were too outdone because they all fell for it; I can still hear Aunt Helen howling at them with laughter.
Just before Christmas 1973, as usual Auntie was struggling with her weight. I stopped by to see her, and she told me she started a new diet. "Penny [she always called me by my nickname], I started a new diet today."
"Really?" I asked. "What's the name of the diet?"
With a sly smile, she said, "The see-food diet."
"I've never heard of this diet, Auntie. How does it work?"
"All it entails is eating all the food you can see!"
That girl had jokes, didn't she? But Auntie had her share of tears too. On September 13, 1996, Auntie awakened to find that her beloved husband had passed away during the night. After his passing she never seemed to be the same. It was as though the joy and light had gone out of her life.
Years after her husband's death, Aunt Helen still talked about him and how much she missed him. Over time, she seemed to slowly lose interest in her church (which she loved dearly) and other outside activities. She stopped going out and became a recluse.
The first indication that something was wrong came in 2001. My daughter, Tonia, and I went to Detroit to see my mother receive an award from her alumni association at Cobo Hall. It was important to Mom to be surrounded by family members and friends, and we were there to support her that night. The day of the awards ceremony, Mom asked Tonia and me to go over to Auntie's house and bring her to the ceremony. When we arrived at the house, she was not ready.
"I'm not going," she told us.
"Auntie," I explained, "Mom's going to be very disappointed if you don't come. She's really looking forward to you being there."
Aunt Helen seemed confused and unsure of what was going on and what she should do. She refused to get in the bathtub, so we washed her up from the sink. I had never seen her like this and started to feel a sense of dread, but I couldn't put my finger on exactly why I felt that way.
While I was working on getting Auntie bathed, Tonia was scouring the closets for an outfit for her to wear (she had lost a lot of weight), and she came across a notebook. She also found a checkbook and uncashed checks in a dresser drawer. As soon as we finished getting Aunt Helen ready, we gathered up all the things Tonia had found and took them with us. A few days later, as I began to organize the items Tonia found in the closet and drawers, I discovered bills that had not been paid or were overpaid. Auntie had written checks in large amounts for household items, groceries, and bills, and to people she knew.
At times we all forget where we left our keys, or why we went into a room to do something and then could not remember what we were there for, or forget to make a bill payment. But the number of things that Auntie was not handling was more than forgetfulness. I knew that my aunt was a good businesswoman and was meticulous in taking care of her business. So for me this was a sign of another problem.
Playing devil's advocate, I will say that Auntie was a generous person, but in her right mind, I don't think she would have been as overly generous as the amounts on these checks indicated. I believe she was coerced into writing those checks. If that was the case, then it could be the reason my mother was kept at arm's length. My mother became suspicious that someone was influencing Auntie when she didn't get to talk to her, and she could never get inside the house when she stopped by to visit. These sisters talked practically every day, and now Auntie looked at Mom through the peephole in the door and told her she didn't want any company. No, something was going on; Aunt Helen and Mom were very close, too close for her to shut Mom out without an explanation.
Back in the day, neighbors were closer knit; people looked out for each other. Auntie lived in her neighborhood for fifty-plus years in a Tudor-style house with a well-manicured lawn, shrubs, and colorful flower beds. The block she lived on was quiet and lined with plenty of shade trees and more well-kept homes. She had long-lasting friendships with her neighbors; they knew our family and we knew theirs. Aunt Helen's neighbor across the street saw me outside one day and began to tell me that he had seen people go in to Aunt Helen's with nothing and come out with bags of stuff on more than one occasion. Now that I was aware of and seeing for myself what was going on, trust and believe that the gravy train was over for whoever was taking advantage of her!
I sat down with Aunt Helen and convinced her to let Mom take over paying the bills and buying the groceries. Mom resumed the routine of talking with her sister and checked on her by phone daily. Things seemed to be back on track for a while after Tonia and I returned home. A few months passed without incident. Then Mom received a disturbing call from the neighbors telling her that Auntie was in the middle of the street in the dead of winter, taking in trash cans in her nightclothes.
On another occasion, one of the neighbors went to visit and smelled gas throughout the house. My mother would find half-eaten microwave dinners in the oven. With all these incidents piling up, Mom decided that she needed to do something. In February 2002, she called me at work to tell me that she had to bring her sister to her house because she was afraid for her safety. Aunt Helen wasn't having it; she cursed at my mom and tried to leave. Mom had to remove the key from the front door to keep her from walking away. As the months progressed, Auntie got worse and began talking out loud to her father and other deceased family members. This terrified my mother, who herself admits to being scared of dead people.
I received another call in June from Mom telling me that things were worse with Auntie and that she was afraid of her. She asked for my help. I requested two weeks off from work and went to Detroit in July. Mom was right—something needed to be done for Aunt Helen. I could see that she needed professional help. I noticed that she could not hold a conversation with me; her state of mind seemed confused. She talked out loud to herself constantly, and that, along with other things I had seen, made me sure that we needed to take her to see someone. When I suggested this to my mother, she jumped to the conclusion that I was talking about a nursing home. She said, "There is no way I am taking my sister to a nursing home; my father told us to stick together." I was able to get her to agree that we should at least take Auntie to the doctor for a checkup. The doctor stated that Aunt Helen had Alzheimer's disease and suggested that she should be in a nursing home.
After talking with the doctor and assessing the situation, I sat down with Mom to tell her the way I saw things, that Aunt Helen required more care than she could provide. She didn't seem to understand what was happening to her sister. Since she had already put her foot down about a nursing home, she enlisted her friends to watch Aunt Helen while she went to work. My mother had officially retired from her job with the Detroit Board of Education years before but continued to work on a part-time basis.
Having spoken to Mom over the phone and hearing her description of Auntie's behavior and having seen things for myself in 2001, I was convinced this behavior was no longer something we could ignore, and with confirmation from the doctor, I couldn't let Mom live in a bubble trying to pretend it wasn't happening.
I began to research Alzheimer's disease on the computer, searching the Internet using the word "Alzheimer's". I went to the Alzheimer's Association website for information and obtained a wealth of information on the disease. The US Department of Health and Human Services, National Institute on Aging, and the National Institute of Health also offered publications for caregivers.
With all the research I had done, I tried to explain Alzheimer's to my mother. I suggested that we take classes and read up on it to know what to expect and how to handle the different behaviors (besides the ones we already had experienced) that Auntie would eventually start to exhibit. Mom didn't want to hear any of it; she seemed to me to be very unreasonable and I guess even in denial. Since she wasn't listening or hearing what I had to say, I recruited Tonia, thinking that Mom would listen to her if not to me. When Tonia arrived in town, we sat Mom down and tried to come up with a plan that would allow her to continue working and keep Auntie at home.
We finally suggested that we should look into an adult day-care program; that would give Mom the freedom to continue her part-time job and give Auntie an outing each day. By the time Auntie returned home in the evening, Mom would be back from work and they could have dinner, watch TV, and retire to bed. She reluctantly agreed. With a little leeway, Tonia and I began to scour the city for day-care facilities for Aunt Helen. But little did we know that things were about to hit the fan once again!
Aunt Margaret is the youngest of Mom's siblings. She and I shared the sign of Leo; her birthday was the day before mine. She always called me her baby. While my mom and dad were saving their money to buy a house for us, I lived at my grandparents' house, and Aunt Margaret lived there too. She would babysit me sometimes.
I remember how beautiful her light brown skin was and how radiant her complexion looked. She had beautiful hands with long, tapered fingers and pretty feet, and she always kept her nails polished. Mom told me that Auntie loved playing the piano and that their parents opted to buy Margaret a piano rather than use the money to send my mother to college. It seems that after that, my mom harbored some resentment. I was told that everyone seemed to boss Auntie around like she was still a child (especially Aunt Helen) and that she resented it. After time passed, she moved away from Grandmama's house and became the elusive butterfly, so to speak. She pretty much stayed away from the family and only came around occasionally. She had a temper and could become volatile quickly.
I was about eleven years old when I personally experienced her mean streak. One day while babysitting, she began to taunt me by telling me that I wasn't going to have a mother and father anymore because my parents were splitting up! I yelled at her that she didn't know what she was talking about and started to run away from her. I could hear her taunting me by calling me an orphan. Needless to say, my mother was furious when she found out about this, and heated words were exchanged between them.
Even when there is dissension within a family, they will stick together when it counts. In 2002, my mother stepped up to help her sister. Aunt Margaret never married and had no children. For more than twenty years, she lived alone in an apartment on Detroit's east side. Mom was listed with the apartment management as an emergency contact, so they contacted my mother when Auntie didn't pay her rent and was about to be evicted. Years before, when Auntie still worked at the hospital, she took Mom and me to her credit union and added us to her account as signatories. This would prove to be a blessing years later. Mom took care of the arrearage, because Aunt Margaret was not acting rationally. She told Mom she had paid the rent and the manager was lying when clearly that wasn't the truth.
While out searching for day-care facilities one day, Tonia and I stopped to eat at a fast-food restaurant. I decided to check in with Mom to see how things were going at the house. When Mom answered the phone, she was hysterical, telling me, "Cyn, Margaret's apartment building manager called and told me that Margaret was seen by her neighbors on her floor running naked in the hallway!"
What! I couldn't believe what I was hearing. Tonia and I headed for her apartment to see for ourselves what was going on. When we arrived, the manager told us that Aunt Margaret had gone to her apartment. She also mentioned that another resident had taken an interest in Auntie and was helping her out.
She said the lady lived on the fifth floor and her name was Ms. Russell. First, we went to Aunt Margaret's apartment on the eleventh floor and knocked on the door. Aunt Margaret answered and let us in. (She was fully clothed.) Once we went in, I was dumbfounded and was in no way prepared for what I saw there. On the heels of our recent discovery that Aunt Helen had Alzheimer's and all that could entail, what I saw in Aunt Margaret's apartment was undeniably a display of the same symptoms and more!
All my aunts kept immaculate homes, and what I saw was a bizarre scene from someone else's life; this couldn't be happening to someone in my family. But it was; here we were right in the middle of a nightmare. Newspapers, Styrofoam takeout boxes, clothes, and feces covered the floors in the entryway and living room. The bed was unmade and smelled of urine, the mattress had rotted, and the bathtub was filled with clothes. There was no food in the refrigerator or cabinets, and sticky notes and address labels covered the refrigerator with her name, address, and phone number on them. It seemed that she had written notes to remind herself who she was and where she lived because she was forgetting these things.
The family had always said that Margaret was schizophrenic, and she had demonstrated those symptoms and behaviors in the past, but what we saw was not that—it clearly was Alzheimer's. Nevertheless, Auntie was cheerful and glad to see us and seemed very much unfazed by her surroundings. We eventually went to see Ms. Russell, and she quickly brought us up to date. She informed us that Auntie knocked on her door one day and asked her for something to eat, and since that day she had been feeding her and checking on her daily.
Auntie seemed to trust her and got along well with her. Ms. Russell said that they often saw each other in the apartment-complex community center for social events and had become friendly. I reimbursed Ms. Russell for the food she had already given our aunt, and she agreed to continue caring for her. We agreed on a monthly payment for her services, and I gave her money for the groceries. The next day, we returned and began cleaning up Aunt Margaret's apartment.
With a plan in place for Aunt Margaret, we resumed our search for and finally found a day-care facility for Aunt Helen to attend. It was the best facility in Detroit out of the many we visited. After visiting five other facilities, we felt that this one was different from the moment we walked in. The doors were securely locked (to prevent someone from walking away from the facility), the main room was bright and cheerful, and the clients were being engaged by the staff and seemed to be enjoying themselves playing games that enhanced memory. Music (that seniors would relate to) played softly in the background. Extra services were also available for their hair and nails, and what impressed me the most was the full-service kitchen that served hot meals daily. Transportation was provided if needed, and the owners were hands-on with their business. So a couple of weeks later, after completing paperwork and physical examinations, Aunt Helen began day care at the Senior Activity Center (SAC) Adult Day Care Inc., in Detroit.
As the ultimate decision maker, my mother was kept in the loop on all that needed to be done, but she didn't seem to have any interest. She just wanted to go to her job. The next thing I knew, Tonia and I were in the midst of updating Aunt Helen's house so it could be rented to defray the cost of the day-care expenses. We also had to finish the cleanup and replace flooring at Aunt Margaret's apartment. With all of this going on, my mother decided that she was being neglected and no one was paying any attention to her (the victim). She became antagonistic and complained about everything. I was updating her daily on our progress and asking for her consent to move forward on things that needed to get started when she told me that her house needed work too! To appease her, I agreed to decorate her house too, and we discussed what she'd like done.
Excerpted from Memoirs of a CAREGIVER by CYNTHIA YOUNG Copyright © 2013 by Cynthia Young. Excerpted by permission of iUniverse, Inc.. All rights reserved. No part of this excerpt may be reproduced or reprinted without permission in writing from the publisher.
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