Saturday, September 12, 2015
1401 Clark Avenue, St. Louis, MO 63103
Registration at 8 a.m. | Ceremony at 9 a.m. | Walk at 9:30 a.m.
Route Length: 1 mile or 3 miles
*Update* Day of the Event Team Shaare Emeth will meet 20 minutes before the Opening Program at 14th Street and Clark at the Al MacInnis statue. Join us at Schneithorst after the walk for brunch and to share our stories.
In the early 80s, my mom and two uncles moved my grandmother into Covenant House. She was independent at the time. That changed quickly. Grandma would be driving and not remember where she was going. The next month there were other incidences as well. In 1991 shortly after my youngest daughter was born, my maternal grandmother passed away. An autopsy confirmed the family’s suspicion. Sylvia had lived with Alzheimer’s. Upon her diagnosis, Irl, her youngest child, became involved with the Washington University Alzheimer’s study.
In the early 2000s, my father started exhibiting signs of age appropriate dementia. He was forgetting where things had been placed, forgetting words and expressions as well. He too became part of the Washington University study.
In 2005, my father’s dementia had progressed more than his peers. It was at this time the family had suspected he may have early onset Alzheimer’s. It was then that I became part of the study. It was and is still unusual for an individual to have maternal and paternal lineage of the disease.
From 2005 through 2007, my father‘s energy level declined quickly, thus he became less physically active. He had begun to shuffle, and have less endurance when walking a few 100 feet. He began stuttering as well as looking through me when we talked. He would make a clicking sound as he was constantly swallowing. Though he did periodically participate, Dad had become disinterested in attending social events including his bridge games at the Temple. Some people within my parents’ social circles no longer wanted to be with them as my Dad “was not the same Ronnie.”
For the next couple of years, my father still went to the “J” daily, spent time weekly with his 4 granddaughters. Dad did continue to lose weight, stability, and coordination. He preferred to stay home and read. Dad was playing in his last bridge game at Temple when he became very ill and was taken by ambulance to the hospital. When my mother and I finally got to the ER, Dad knew he was in the ER but did not know why. The doctor said the ambulance drivers and the intake in the ER could not find his cell to call his ICE. This was when we knew dad had “crossed over.” This meant Dad was no longer a study volunteer. He was now a patient in the program, and able to receive various treatments to possibly slow the progression of what now was thought to be Alzheimer’s and no longer just dementia. Dad would go monthly for visits to the clinic with Dr. Schneider. Dr. Schneider educated us on the disease as well as what we could expect over the next year. This included total exhaustion, loss of appetite, difficultly swallowing, amounts other symptoms. She explained that many patients with Alzheimer’s die from choking on their own saliva.
As Dad became less and less interested in activities, he preferred to stay home and read or spend time with the family. Dad verbalized he no longer felt as though he was the patriarch of the family as he felt he could not holding everything and everyone together. He knew something was wrong.
In 2009, Dad became dependent on a calendar for daily activities from times of taking medication to going to “J.” Dad could no longer run errands. Within 6 months, Dad had a series of 3 minor accidents. Dad was required by the City of Creve Coeur to take both the written and driving part of the state driver’s test. He had failed twice. After working with a driving coach, he passed on the third try. I was afraid not only for him, but others on the road.I, as well my brothers, had asked Dad to stop driving. He refused and was angry that we continued to ask. At a doctor’s appointment, I asked my Dad how he was going to drive home, as there was a detour on Olive Blvd that day. It was then he realized and said to my mom it was time to sell the car.
In 2010, my father walked me down the aisle for my wedding. I was not sure we were going to make it as he had no strength, endurance, and an extremely unsteady gate. This was one of the last times Dad showed any emotion.
In 2011, we celebrated my Mom’s 70th with a large party. Dad was not able to make a speech. February of 2012 was their 50th wedding anniversary. My father was literally speechless and a bag of bones.
In March, my Mom said now she had to do more than just set out Dad’s clothes. He was putting them on inside out, backwards, and periodically in the wrong order. He had begun brushing his hair with his toothbrush. Mom was in denial that Dad was ‘really bad.” Within the week was Dad’s regular, now twice a month, visit with his internist. Prior visits, I would step out of the room with the doctor to ask questions that I was afraid of asking in Mom and Dad’s presence. That visit, I stayed in the room and I inquired about hospice. The doctor and Mom agreed. It was time. My Dad passed away a couple of weeks later on a Wednesday morning at the age of 72, just a few days prior to my youngest daughter’s 21st birthday. The autopsy confirmed Dad did have Alzheimer’s.
Today, I still actively participate and support the Alzheimer’s study. I carry in my wallet a card to donate my brain to The Alzheimer’s program at Washington University. Come walk with me to End Alzheimer’s.
I Walk to End Alzheimer’s because I believe that someday there will be ways to prevent and cure Alzheimer’s disease. I Walk to End Alzheimer’s because we need to raise funds to support research NOW. I Walk to End Alzheimer’s because my father died from Alzheimer’s related causes. I Walk to End Alzheimer’s because we believe my paternal grandmother also had Alzheimer’s. I Walk to End Alzheimer’s in the hope that this generational link will be broken.
We all have reasons we should walk. Please join me on Team Shaare Emeth at the Walk to End Alzheimer’s on Saturday morning, September 12th at Scottrade Center. Registration for the walk is free, but donations are strongly encouraged.
Catherine was a dear, loving woman, mother of four. I see her laughing at family events, cradling a new grandchild or a new puppy. She loved making her special chicken and dumplings in her favorite pot, in her favorite chair cross-stitching another piece for one of the family.
I also remember her being lost in her neighborhood, lost in her own home, and sadly unable to recognize me or my siblings. She was tearful but not sure why, frustrated being unable to communicate her needs. She became frightened with any attempt to move her from chair to bed. Did it matter which type of dementia she had been diagnosed with , Alzheimers or other? No, because these diseases affects us all in he same way – both victims and families suffer from loss of “self”, and require all encompassing physical and emotional care. The well-known book “The 36 Hour Day” is an excellent description of care required – for patient and caregivers.
We are all commanded to see G-d’s creation in every human being, commanded to do justice/mercy/walk humbly with our Creator. Catherine was certainly G-d’s creation, there are four children and eighteen grandchildren/great grandchildren now remembering her upcoming yahrzeit.
The best way for me to honor Mom’s memory is to participate in the Alzheimer’s Walk, on September 12, 2015, with the Shaare Emeth team. Each step we take may lead to another step forward in research to cure this awful disease. Certainly we are working toward mercy and justice for all.
Perhaps we will remember the last generation to be afflicted in this way.
May it be so.
by Nancy Lythgoe Taxman, Proud daughter of Catherine Zoll Lythgoe