When you discover Alzheimer's runs on both sides of the family, you can't help but hope you wind up having someone to care for you the way you cared for your loved ones who suffered.
Health Life

Grace in the Face of Alzheimer’s

When you discover Alzheimer's runs on both sides of the family, you can't help but hope you wind up having someone to care for you the way you cared for your loved ones who suffered.

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By Julie Buckley

The irony is not lost on me when my Japanese student comes up with the irretrievable word on the tip of my tongue as I am trying to teach him English. Or when my six-year-old is able to finish the sentence I started better than I can. I’m approaching 50, so I look up “menopause symptoms” on the computer and am relieved to see memory issues included. It’s just a momentary reprieve, though. The fear of Alzheimer’s disease lurks just under the surface.

My mother is suffering from dementia most likely caused by Alzheimer’s, and with her, everyone who cares about her. The matriarch we all knew and loved is fading fast. A frail and confused little person replaces her, repeating herself constantly and getting panic attacks that can only be alleviated temporarily until she forgets whatever explanation or comforting words helped her to begin with. General terms take over the specific ones she would have preferred to use; cream cheese is “white stuff,” colander is “the thing with holes,” and the symbol of her lifelong faith is reduced to “the t-shaped thing.” Her concept of time is distorted. An event that happened just months ago, if recalled, might as well have been from decades past. She can name some family members, but not all, and she is inconsistent even in that. At this point it is unclear if it is only the name she has lost or the entire memory of the person.

As my mom began her descent, I experienced flashbacks to my junior high years. My dad’s mother had come to live with us for a while after it was deemed unsafe for her to remain in her little apartment out in the Midwest. I didn’t have any concept back then of what a devastating thing it is for a person to lose their mental capacities. To my 13-year-old self, it was kind of funny how Grandma would say the same inappropriate things (she was a character, after all) and ask the same ridiculous questions (no, I did not acquire a boyfriend in the five minutes since you last asked me) over and over. In fact, I didn’t know my grandmother before she came to our house, so it wasn’t like I could see a change in her.

I remember the day when my father, a stoic man who really never engaged in conversation with his nine children, approached me in preparation of my grandmother’s arrival. “She forgets things,” he warned me, “and I don’t want anyone to make fun of her.” When you can count the total number of words your father ever said to you, you hang on to them. This must have been serious business for him to break his silence. He must have really loved his mother. I will even say that when he uttered those words, I was suddenly able to see him as a real, vulnerable person, and I began to love him, in a way that was beyond mere filial duty.

It was okay having Grandma live with us, from my perspective at least. She was fine physically, she said humorous things, she didn’t seem disruptive. Then came the night that my just-older brother and I still recall as one of the most traumatic in our lives. Grandma took a wrong turn in the dark hallway and tumbled down the stairs. She broke her hip, and that was the beginning of the end of her time in our branch of the family tree.

I remember accompanying my dad to visit her in the hospital, following behind his long strides, looking up to him. He would come home after a long day at work in the city and go to his suffering mother. As she was recuperating, she would beg him to take her home, exclaiming, “I promise I’ll be good!” It was heartbreaking as he explained the situation gently again and again. He would literally pull his own hair out as she insulted the nursing staff, but he remained tender towards his mom.

I took my cue from my dad, and one day I decided I would go by myself to visit my grandmother after school. It was in walking distance, but it was definitely some big steps out of my comfort zone for me to go there. I sat there with Grandma and began to make awkward conversation. When a nurse came in and asked, “Who do you have visiting you today, Gertrude?” she said she didn’t know and she’d never seen me before in her life. Knocked down easily, I trudged home not feeling nearly as good about myself as I did on the way there.

These experiences from my formative years come back to me now. I’m in my dad’s place this time around. I see the change in my beloved mother. I know how painful it is to lose her slowly while she is still here, just as Dad did with his mother. (He actually died almost a decade before his mother, but he lost her way before that). I know it is important to be as kind as possible to those who were once the most powerful people in our world, now the weakest. My father was by no means a “hands-on dad,” but he left that message indelibly etched on my spirit.

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So it turns out that this degenerative dementia exists on both sides of my family as I have seen it firsthand with both my mother and my paternal grandmother. It would not be particularly paranoid to fear getting it myself, especially when I can’t come up with that perfect word, find the item I placed somewhere special, or forget why I walked into the room.

When it became obvious that our mother could no longer live alone, we siblings had to communicate with each other to make decisions on her behalf. In each conversation I was a part of, my mind couldn’t help but replace “Mom” with my own name. Will my experience mirror my mother’s? I imagine my four children one day having similar discussions about me. Which might not want to face my decline at all? Which would want to help, but maybe not directly? Would any of them want to deal with me moving in?

Sometimes my mom will call me needing reassurance that I am well and my husband and children are okay. She cannot recall their names or ages or what they are up to, but she knows they are her family. She feels a compelling need to check on her “little chicks,” as she calls us all. And that is when I know she is still in there.

And when I hope my own children will always be able to find me.



About the Author

Julie is a part-time English instructor and a full-time mom of four. She lives on Long Island with her family and cats, and you can follow her maternal musings at maternalmuses.blogspot.com. Her essays have been featured on Mamalode and Scary Mommy.