The Truth Many Times Over


Lately it seems, I am constantly running into people stumbling through the care of their parents. I realize there are many reasons for this phenomenon. One is of course my age. At mid 50’s most of my friends and acquaintances have elderly parents as I once did. The other is that because I went through this journey with my mother I am open to discuss the emotional ups and downs. The frustrations of dealing with uncaring hospitals and doctors, the joy of finding the perfect fit for a parent with caring doctors and nurses. And the fright of walking everyday down a path that you truly don’t want to be on. Getting a diagnosis for dementia can be heart wrenching for all involved, the parent, spouse and the child.
After Mom moved in with me, I luckily found a geriatric doctor who had established his practice based on making house calls, he did not actually have an office. Dr. C was a kind, calm man and my mother immediately trusted him. Over the course of several visits he took the time to get to know my mother, her past life and to understand my concerns. Eventually, Dr. C instructed me to make an appointment at the nearby dementia clinic. With dread, because I felt I knew what the answer would be, I made the call. The expert there concluded what Dr. C already knew. Mom was suffering from dementia. The question remained, How or should Mom be told?

Following is an excerpt from my upcoming book A Slow Slide into Nothing.

With guidance from Dr. C, we determined it was best for him to tell Mom the truth about her condition. He arrived on one of those summer days that makes me realize why I live in upstate New York. The sky was bright blue, with light green spring leaves just beginning to turn to their darker summer shades. The temperatures and humidity were at a level to enjoy the warmth of the sun and the cool breeze, as it brushed the hair from my face. I longed to be outside doing something, anything, different from what was happening in my home.
While Roxann and I gently took Mom hands, Dr. C, with his kind eyes and soft voice, gently told her she had dementia. It was brutal to watch her expression change from denial to realization. Mom asked a few questions, then became silent and eventually lost interest in what was going on around her. Roxann and I questioned Dr. C as to what we should do next.
Later that evening, Mom did not seem bothered at all by this news and the three of us avoided the topic like the proverbial elephant in the room. Roxann and I were amazed at how she accepted her fate so easily.
Mom’s reaction became apparent and heart wrenching upon Dr. C’s next visit and for subsequent visits afterwards, each time, Mom would ask him the same question. It wasn’t that she didn’t believe him, the truth was, she couldn’t remember from visit to visit what he had told her. I grieved each time along with her. In a strong voice, determined to handle her own life and the unknown, she would ask,
“What is wrong with me?”
Dr. C would answer every time as gently as he did the first: “Corki, you have
dementia.”

Advertisements

Summer Wandering and Mom


This has been my summer of travel. For pleasure, my husband and I took several days and meandered down the east coast, then we bee-lined across the state of North Carolina to my favorite southern lake for a family Fourth of July party. I went on a working adventure with my daughter to help her move into her new apartment before she starts law school. I discovered, while I traveled for The Scotia-Glenville Traveling Museum, the varied regions around the upstate New York area that until now were unknown to me.

During all of those hours of wandering I let my mind wonder, hoping to be inspired. To my disappointment no words jumped out of me begging to be put to print. But, a realization did occur. I have written, over the course of several years, my feelings, frustrations and the day to day surprises that helping an elderly parent with dementia can bring. Consequently, I feel it is time to share some of my words as they form into my forthcoming book.

Recently, I recalled a conversation I had with Mom on more than one occasion. This was several years before any of us suspected something was wrong with her.

“Rosemary, I seem to be forgetting things a lot.”

“Oh, Mom, that’s normal. Heck I forget things all the time.”

“Yes, but this seems to be more than normal.”

“Mom, I wouldn’t worry about it.”

Thus, I brushed her concerns away before she could elaborate more. I suppose I didn’t want to hear about anything being wrong with my mother. So I felt dismay when I recently heard a doctor on a news program say that many people know that they are having early signs of dementia. They realize something is not right. It pains me to think my Mom was alone in this knowledge and that I avoided that conversation more than once.

Eventually, my siblings and I did become aware that Mom was struggling and that something needed to be done. I recall vividly the day I entered Mom’s house to pack her suitcase and bring her to my home for what I thought might be just a long visit. It turned into so much more.

The following is an excerpt from:

A Slow Slide into Nothing

I arrived at the Indianapolis, Indiana airport, rented a car and drove to Wabash. As I pulled the car into the driveway and parked, I realized it was already warm for a day in May. I walked up the sidewalk; I could smell the fertilizer being spread on the fields just outside of town. My nose crinkled and I sucked in and held my breath so I wouldn’t smell the ripe aroma of manure in the air. When I stepped onto the porch, I expected to see Mom at the door, but, instead I had to let myself in. There she sat in the dark living room. I glanced around, remembering the salmon pink limestone fireplace that fills the wall at the far end of the living room, the family portraits, and my wedding picture. I waited for the years of childhood memories to come flooding back but they did not, could not as I looked at my mother. She looked frail, tired, and scared. Her clothing was dirty and full of stains. I was taken aback. How had Mom let herself get to this state? Mom always took pride in her clothing. She had dressed competently for her job as a high school counselor, later sternly as the city court judge. Now she wore clothing that did not match and food had dribbled down the front of her shirt. Seeing her this way was terrifying. I took a deep breath; I struggled not to appear shocked. Mom seemed embarrassed by the way she was dressed; the mess the house was in. Yet, she was unable to make any decisions or act to change it.

In a few short hours, it became apparent that Mom was far worse than I had thought. When she had mentioned on the phone she couldn’t pack her suitcase I assumed, it was not that she couldn’t but that she didn’t want to. I quickly realized she didn’t have the stamina, or the power to decide what to pack. Our past phone conversations raced through my mind, and I concluded she must have been lying to me about her lifestyle. I attributed her condition to depression about my father’s death and her forced retirement after losing her re-election as city court judge. Instead of haunting familiar places and reminiscing, I spent four days visiting Mom’s doctors, getting her car in working order, throwing out rancid food and packing. Mom sat on her bed and weakly told me which clothing she might want to pack. Most of her clothes were not clean, so I stuffed them in a suitcase knowing I would need to do laundry once we returned to my house. Just going through her medication was over-whelming. There were many duplicate prescriptions, some unopened bottles; others were empty with no replacement for them. I was frustrated trying to decide what prescriptions Mom actually needed to take and why.

Over the next few days, besieged with decisions about Mom, I was the picture of business on the outside. But, on the inside emotionally, I was falling apart. I suddenly realized that Mom was now the child and I had become the parent.

On the last day, I helped Mom climb into her packed car. We pulled down the driveway. She barely looked back. I gazed at the house I had grown up in, literally since birth, swallowed my tears, put on a good face for Mom and drove away.