When Illness Hits Home – Coping With My Mother’s Dementia
You wouldn’t know by looking at her. At 82 years of age, she looks great – smiles, looks you straight in the eye, nods her head in understanding. But when she tries to make a sentence, she mumbles in nonsensical words. In that moment, the sad truth becomes evident. She doesn’t know my name, or that I’m the youngest of four children. She doesn’t know who I am or that I am her daughter. My mother is entering the latter stages of vascular dementia, the second most common form of dementia following Alzheimer’s Disease.
Over the past 4 years, many of you have followed me as my mother’s cognitive and verbal functioning have steadily declined. At times, knowing that she was once a vibrant, highly intelligent and physically active woman, watching her cognitive function slowly deteriorate to this state is difficult to face. Before I go further, it is important that I share some important history about my mother.
She was the oldest of four children, born in Berlin, Germany on March 5, 1935. As a young child, my mother had fond memories of her father teaching her about herbs in the garden and learning about plants. Then the world turned upside-down. The rise of Hitler and WWII hit Germany and the rest of Europe. Growing up, my mother told me stories about how they barely had food to survive and she had to stand in line to get rations of food for her family. They fled from Germany to Poland in the later years of the war. Although, my grandparents not Jewish, my grandfather opposed the Nazi regime, and thus, was sent to a concentration camp where he ultimately lived out his days. By her late teenage years, my mother decided she wanted to settle in America.
My mother met my father at party. He was handsome, smart, older, (13-years older) and wanted to learn English. She was the perfect match. After teaching him English, they married, and moved to the United States in 1958 (That’s the quick version of the story!). My father studied psychiatry in Germany and needed to write and speak English fluently to pass his exams. His first position was at the State Mental Hospital in Delaware where they lived on site for the first few years. My oldest sister was born in 1959 and in 1960 they moved to California where they had three more children – me being the youngest.
Growing up, I was always so proud of my mom. She was strong, determined, and seemed unstoppable. Her hard-core German nature and work ethic was transferred to all of her children – work before play, always!
She loved to do ceramic crafts, cook amazing meals, read us Grimm’s fairy tale stories. She was an amazing cook, an avid artist, and lover of nature taking up the hobby of photography during her later years.
While in junior high school, my parents got divorced after many years of turmoil – which I felt was a good thing. Seeing so much pain for so many years wears on a child. My mother then got her chance – her dream – to get a doctorate in psychology. She received her Ph.D., as well as earning the recognition of Phi Beta Kappa, from UC Riverside ( I too earned this recognition at UC Berkeley and the Phi Beta Kappa “key” we both possess bonds me and my mother). She taught classes at UCLA and worked as a clinical psychologist.
My mother remarried, moved to Mammoth Lakes and spent many happy years with my stepfather, who has since passed. She loved to hike the John Muir Wilderness and take photographs of nature. Here is one of my favorites taken in 2012 by my mother.
Her decline was subtle at first. My mother would forget names of people familiar to her, forgot places she had visited and started making up stories about people. She lost interest in photography, hiking in the mountains and she no longer wanted to cook or read books. She became angry and frustrated that she couldn’t remember things.
My mother went along this path describing the stages of dementia:
About a year ago, she started saying strange things and asking odd questions, like “did you know your father?” In November of last year, she hid the black jacket that I bought her for fear that someone would take it. In February, she mistakenly put cat food into the tea pot – she knew something wasn’t right, but didn’t know exactly what.
This last visit to my mom was the hardest yet. After driving 6 hours from San Diego to Mammoth, I greeted her at Roberto’s her favorite Mexican restaurant. She was sitting at the table with Rosa, her caretaker. She gave me a big smile and a loving hug. Wow, I thought to myself “Maybe she remembers me!” But alas, she didn’t know my name and called me her sister. I just went along with it because there was no point in arguing or correcting her. In her mind, that’s who I was. Rosa’s name is “that woman.” My mom can’t remember her name either. Just so you can put a name with the beautiful face, here is a picture of Rosa.
If ask my mother a question about how she is doing, she mumbles something that I can’t understand, trying hard to access the words, and then reverts to her native tongue, German. Interestingly, there is one word she hasn’t found hard to say…“BULLSH*T.” She articulates this quite well whenever she disagrees with something, like getting a hip x-ray at the hospital after complaining about hip pain or taking her Coumadin medication.
Knowing her time is limited, I had tried to visit as much as possible over the past few years – driving the 6-hour trek on 395 listening to books on tapes or podcasts. With every visit, I witness her continuous decline from being the proud mother of 4 children who earned a Ph.D in psychology, as well as Phi Beta Kappa, to a woman who can barely form a full sentence.
One thing that is very interesting during this decline is her more gentle and loving nature with me. I’m not saying that she didn’t love me as a child, but she never really coddled me. Maybe it’s because I always gave an air of confidence and exhibited self-sufficiency from an early age. Being the youngest of four children, her time was limited and I never wanted to stress her – demanding as little attention as possible. Years later she said to me “You were always so self-sufficient. I knew you could do anything you wanted to. I knew you would always be fine.” At that time, this brought both light and sadness to my eyes.
Now she gazes blankly into the sky and focuses on the picture of her two beloved kitties. Without them, I’m sure she wouldn’t have made it this long.
As I leave, she thanks me for visiting, gives me a big hug and I can feel the love flow through my body. Maybe she doesn’t know that I’m her daughter or my name, but she knows that I’m someone with whom she shares a deep connection and that’s good enough for me.
There is always hope. She is happy, comfortable and enjoys sitting with her cats. Rosa will continue to take good care of her and she will stay in her house – the one wish my mother deeply desired is that no matter what, she would stay in her home and never be admitted to a nursing facility.
Her wish is being honored and we take everything one day at a time. One thing that hasn’t changed during this whole cognitive and physical decline is her love for margaritas!! Taking a big sip from the frosty straw always brings a smile to her face. Along with so many others, that’s one proud trait that I got from my beloved mother!
Thank you for everything, Mom! You’re the best!Happy Belated Mother’s Day! In health and happiness,
Please share your comments and experiences!