“Through it all, every now and then the wires would connect and she would be herself. Make a joke or laugh out loud watching her grandchildren goof around. Comment that she was truly blessed and so proud of her family and her life. Those moments were just as heart wrenching.”
By Kaimy Marks
My mom knew something was wrong long before we did. She had cognitive tests done while in her mid-50’s, years before we noticed the signs. She obsessively read articles and books on brain health and tried every supplement and diet advertised to help ward off the disease that she knew was taking hold of her. But she protected us from her fear. She did not want us to worry.
She was always very sharp, extremely witty, good with numbers, crossword puzzles, an avid reader – both online and book forms, enjoyed brain-teaser type activities, and had a strong sense of curiosity about many things. She worked as a Postal Clerk at two different Post Offices during her career and could name every customer’s box number from both offices. She retired early at age 59 and looked forward to traveling with my dad and volunteering in the community.
But as the disease progressed, she had difficulty typing simple e-mails, maneuvering the web, addressing mail, using her cell phone, calculator, television remote or retaining anything she’d read recently. She would repeat herself often, ask the same questions repeatedly, and had to write every appointment/commitment in her calendar, even if it was something happening later the same day. She feared getting involved in volunteer activities because she was aware that her concentration and ability to learn new tasks was limited. She did not want to be “found out” or worse, become a burden to anyone. This led her to become very withdrawn and limit most social activities.
She lived in and around our town of less than 30,000 people for 40+ years and began having difficulty finding her way around town. When inside a store, she basically wandered around and appeared somewhat dazed. After leaving a store with her once, she followed me to the driver’s side of my car when we were leaving. I had to remind her to go around to the other side of the car to get in. When simple things like this were pointed out to her, she would become quiet, sullen, reclusive and defensive/hurt. It was heart wrenching to witness, and frustrating because I didn’t know how to handle or respond to her actions and emotions without her getting upset.
She complained of being bored and feeling useless, she needed constant reassurance that she was loved and wanted and often didn’t feel worthy. My Dad did his best to communicate with her in the kindest manner possible, but she would become defensive at the smallest things and they would both end up frustrated and hurt over very simple misunderstandings. She once showed up at my door in tears, angry and distraught because she couldn’t figure out the television remote and my dad was not home to help. This was not the mom I’d known my whole life. I froze with fear and felt inadequate comforting her.
There would be many more gut-wrenching episodes and unpredictable, violent behaviour that would leave me completely dumb-founded and usually in a puddle of tears. Doctor appointments would always end with her crying and begging to die. The only blessing seemed to be that she would not remember how distressed and distraught she had been within a few hours. It was impossible for me to forget. It was a helpless existence.
Through it all, every now and then the wires would connect and she would be herself. Make a joke or laugh out loud watching her grandchildren goof around. Comment that she was truly blessed and so proud of her family and her life. Those moments were just as heart wrenching. I grieved knowing she wouldn’t have more accomplishments in her life, wouldn’t see her grandchildren grow up, wouldn’t be growing old with my dad. I grieved the loss of my best friend, my mentor, my mother.
Her death came sooner than any of us could have predicted. It brought an immediate sense of peace and relief that we were reluctant to acknowledge or talk about. It was difficult to accept sympathy from people that didn’t know the long, hard struggle she made and the years of mourning already behind us.
My mom would always remind me to “find the lesson and learn from it” in every challenging situation or disappointment in life. I’ve learned so much through this experience and it has undoubtedly changed my thoughts on life and death.
I am learning to find joy in memories and enjoying the present as much as possible. It really is all we have and we don’t know how long we’ll have it.