On July 30, 2019, my mom passed away after an 8 year battle with Alzheimer’s Disease. I watched her go from a smart, loving, out-going person who loved to read, have lunch and shop with her girlfriends to being unable to independently eat or speak coherently.
While I lost my mom in 2019, my grieving started long before her death. From the time my father passed in 2009, my mom lived with my husband and myself. We were so very excited for this as she and I had many plans of doing so many things. And we did, in the beginning. Mom loved to go to the casinos. She could play a machine for hours and we’d take an overnight trip often. Or she would fly or we would drive out to Philadelphia to visit her family or go to FL to see my sister. Reading was a passion of mom’s. She could start a novel and read all night just to get it finished and start the next. She loved to clean and kept a home that was beyond immaculate. Over time, all of this stopped.
I noticed after my dad died, mom changed. I couldn’t explain it to my family and friends, she was just different. While mom would repeat things often, her memory was just not there. People would tell me she was mourning the love of her life and couldn’t get over it, “give it time” they all said. Slowly, she was gone. There are many people that have life events that loved ones miss because of death. Alzheimers is a disease that robs people of those events long before death. Although we still included mom in everything possible, it became difficult. In 2016 my daughter was getting married. She was good that day, until the evening. Sundowners was horrible for mom. We could set our clocks and know when it was 4p without ever looking as her demeanor changed like flipping a light switch. That year was the year (September 2016) I had to make the decision to put mom into a nursing home. The previous year was particularly hard as I had a bout with cancer. Mom was starting to roam at night, falls were becoming more frequent, and the incontinence was beyond my control. Something had to give. We held on as long as we could, and while the transition was smooth, this killed me little by little. I promised my dad I’d take care of her and now I’m feeling like I have failed both of them.
In the facility mom would attempt to direct people. In the beginning she would go room to room shutting off lights. She would also go behind the nurses station to ‘straighten things out’ or to ‘clean the floor’ (getting down on her hands and knees with a rag).
My mom was one of 13 children. She was the second oldest and the first to be diagnosed with Alzheimers. While there have been siblings that she lost, none were to Alzheimers. In recent years one of her brothers, now 85, is experiencing signs.
This will be my 4th year walking in the Peoria Walk to End Alzheimers. My mom was very aware of Alzheimers and the walk as her best friend’s husband was diagnosed in his 60’s. She supported the cause and found it to be so very sad. In 2017 mom was going to walk/be pushed in the walk. Her day was extremely bad and there was no soothing her, it broke my heart. We had a great turnout and we walked in her honor, including girls from the nursing home that cared for her.
To hear the word Alzheimer’s doesn’t always resonate like other words/diseases do. If you hear the word stroke, you may think of rehabilitation or the inability of doing something, but not death. Cancer, that person could die or with treatment they could be saved. When someone tells you a member of their family has Alzheimer’s most people don’t think of death. NOT true! Being diagnosed with Alzheimer’s will not take that life, but the complications of the disease will. In my mom’s case her body started to break down and she passed away from a bowel obstruction as she could not have it repaired, she would not have survived the procedure. Over 8 years she lost her sense of trust becoming paranoid, she lost her ability to recognize where she was or who we were. She could not recognize words and could not read. People do not understand what a slow, horrifying process Alzheimer’s is for both the person with the disease and the family.
For years I walked in the Susan G Komen fight for breast cancer and would become emotional when seeing all the pink. However, until I experienced it first hand with my dad having breast cancer and carrying a banner for mens breast cancer awareness, I hadn’t experienced it on that emotional level. It is the same with Alzheimer’s. I heard about others, saw it from a distance, yet until I experienced it first hand it did not have the impact as it did when it affected our family. At some point you will be affected by this horrible disease. In walking I have carried an orange flower to show support, a blue and yellow flower showing I lived with and cared for someone and for the second year I will carry a purple flower for the loss of my mom. My heart cries often for my mom. I hold her laughter and memory in my heart and pray daily that one day I will see a white flower held high, knowing that no family will ever again have to walk the path our family has and that there would be a survivor among the crowd!
This is why I walk …