My Dates with Alice
By Elizabeth Kwong
Memories and family supported me as I helped my mother with Alzheimer disease.
My dearest mother, Alice, was born in Toisan, China, and graduated from normal school, where she trained to be a teacher. Immediately after marriage to my father, Yung Sao, in 1947, she moved to the Philippines. She taught at a local Chinese elementary school for a short time and had seven children, all university graduates, some with more than one degree and in different professions.
My mother did not have an easy life. First, she had to serve my dad from head to toe and still had to take care of seven children, and later on grandchildren. She was a fighter, and her tenacity got us all out of hardship and carried us through all those years when money was tight. Although she was a typical Chinese wife to my father, she was not shy in learning different languages so she could communicate with employees and learning how to drive around foreign places. To us, my mother was tougher than nails, watching over household affairs and also tough employees in the bad side of Manila where our family’s processing plant was located. All the employees, some of whom were ex-gangsters, called her “Mrs.” with respect and never contradicted her orders. By her example, our mother taught us many things as young kids that hold us in good stead today, like hard work, loyalty, work ethics, good manners, respect, and sound moral values. These values have made us who we are today, and we thank her so very much for these.
Although there are seven of us, I felt that she managed to treat each one of us special. I was a sickly kid growing up. I remember her rubbing ginger wrapped in rice on my chest when I had tough nights coughing, unable to sleep. She would continue until my coughing was controlled and I had fallen asleep before leaving my side.
Despite working and taking care of the household, she never forgot to enjoy the simple things in life. Her favorite song was a Chinese song about a flower that becomes fragrant in the evening. This song would play in the afternoon, and she would never fail to tune in her small radio as she worked on her Singer sewing machine. Her other favorite songs included Bridge over Troubled Water by Simon and Garfunkel and Beautiful Sunday by Daniel Boone. She was indeed a thoroughly modern woman beyond her time. She never backed down from competition even in the Filipino game Sipa (where one kicks a light piece of lead wrapped in paper in the air as many times as possible to keep it from dropping to the ground) , a card game called Pekwa, and Bingo. Invariably, she managed to keep us entertained and occupied without sending us to camp.
Coping with Alzheimer
Following my mother’s diagnosis with Alzheimer, I took early retirement after a long and successful career at Merck. I travelled from Montreal to visit her in Vancouver, B.C., at least four or five times a year. In preparation , I would read up on any Alzheimer publications so I could help her get through those tough times and to help me understand this devastating disease. I joined Alzheimer Canada to read what others had blogged about. Additionally, I joined all electronic communities that had open dialogues.
I learned three important pieces of advice: 1) I should expect changes in my mother’s personality. 2) The disease had several stages, where patients will transform without their control. 3) They will be dependent on others even when they don’t agree with the care. With these lessons in mind, I had to prepare myself and find the means to help her live through this.
On each of my visits, I made sure that I spent as much time with her as possible and was there during her waking hours and feeding time. I treated my visits like dates. I looked up how to’s on successful dating. Although most of these didn’t apply, there were helpful tips I gathered and used. Three important considerations I made were to maintain her self-respect and dignity, make her the sole focus of my attention, and develop a thick skin to her reactions to my attempts at keeping her comfortable.
In the early stage, when she was still able to rationalize and understand her transformation, we talked to her a lot and made sure she knew that her children were there to support her and make sure that her privacy would be respected. I would give her space, and I did not obsess over what I thought would be good for her. I let her speak her mind to let me know what she needed. I brought a deck of cards with me on those visits so we could play Black Jack to alleviate her anxiety. We also passed the time talking about my siblings so she could still connect with each of us. Although the home had their own grooming services, my older sister (who was her constant companion) and I had a two-woman operation so we could maintain her appearance. Cutting her hair and nails was challenging for others, so we would do this since she was more familiar with us.
Adjusting Her Medications
Although the neurologists would always try to prescribe high doses of sedative to keep her well controlled, as a pharmacist and research scientist, I have an understanding of what those drugs could do to her. At the same time, I tried to observe which drugs would be more suitable for her symptoms. One characteristic of this disease is that, unfortunately, no two patients are alike. Each patient needs to be titrated with her own medications. After several experimentations with the neurologist, we managed to get her dose and drugs selected to manage her sleep. At the same time, we also found the right medication to control her aggression so as to maintain her dignity, but unfortunately that also robbed her of expressing her emotions.
On some of our dates, we just held hands, and I would sit with her while she stared across the room and watched the other residents with their visitors. I tried not to look at my phone to check email and messages that would distract me from concentrating on her needs, unless there were pressing problems that I had to deal with as a consultant. (I had started my own consulting company to help deal with my own anxiety about retiring at an early age.) One suggestion that I didn’t follow from the Alzheimer blogs was to have music in the background while talking to my mom. I found she became intolerant to noise. I noticed this when my younger sister would visit at the same time, and my mother would become annoyed with her incessant talking and even yelled at her for this. This was one of the transformations that surprised me. This is the part where I had to be flexible and not stick with one style of dating.
One critical factor I managed to get her cooperation on was food. She loved food, but was very selective. Even in the midst of her brain shrinking from this devastating disease, she baffled both my sister and me when she remembered the phone number of her favorite restaurant and jotted it down so we could call them from the nursing home to order take out!
As the disease ravaged her mind, she lost her capacity to communicate with us and understand our stories. Although she still managed to keep eye contact, it was very obvious that she was having a hard time following our conversations. She managed to blink and have some pattern of movements that we tried to decipher, but we were unsuccessful.
My dates with Alice were unique, and I learned a lot about myself and this disease. To sum it up, Alzheimer had taken so much away from my mother, but a lot was still left. She was indeed Still Alice.
We lost my mother at the beginning of this year, but we have missed her for a long time. She was diagnosed with Alzheimer in late 2011 in Vancouver, where she had been a resident of an Alzheimer-friendly home. We have missed her laughter, her energy, her fun-loving attitude, and the happy ending that we wished for her. It had been five years since she was truly herself, and yet it is still sad to let her go.