Death by Dementia: The Long Goodbye

DEATH-BY-DEMENTIA-The-Long-Goodbye

by Paula Susan~
My mom has vascular dementia. (WebMD Definition) It has been robbing her of her life’s blood (literally it impairs blood flow to the brain) for years now. My sister and I saw indications of memory loss long before her diagnosis. We attributed it to the aging process and we saw it as quite normal.

She had raised us on her own since we were three and five. In those days, she was an anomaly; a divorce, raising children, working two and sometimes three jobs to give us what she thought important – experiences like New York’s Rockefeller Center, ice skating, ballet – all on rare occasions – each memorable. And, there were no divorce groups around for her support.

My sister was undeniably her favorite, although mom did try to be fair. I didn’t mind. I knew I was too deep, too sensitive, too smart for her comfort level, and I accepted my growing up introverted, my comfort coming from my grandmother, classical music and books.

Mom was just like her father; critical, distant – yet she could also be funny and light. I have wonderful memories and not so. Isn’t that all in the lifetime of a relationship? There is a song on the Diva album called “Momma”. He sings “Thank you for what I am and what I am not.” I feel that way.

It was her critical nature that led me to grow up protecting my inner core and creating myself on my own. I did it slowly, with many missteps, sometimes choosing to love men who also were never adequately loved, yet who manifested that pain through anger at the world and self-loathing. I escaped in the other direction. I loved everybody, filled with a profound love for life. I was the rescuer, until it cost me too much.

Today, I thank my mom for the good and for the bad. I knew what I didn’t want to be, and the driving part of me was a compensation for the not-good-enough I felt in those early years.

My phone calls to her were daily, when she lived in Florida, and my visits were daily when we moved her to South Jersey. I continued to share my life with her, anticipating that some day I would feel her approval, until I finally “differentiated” ( somewhere in my forties).  Yet, I never stopped the calls. I just stopped hoping for her comfort when I was pained, or her acknowledgment when I accomplished something. I guess that is when I “grew up”.

I’ve seen people get meaner in the later stages of either form of dementia — Alzheimer’s as well as vascular. While mom remained critical and demanding until the last few years, she then sank into herself. What replaced her criticism was her smile at my presence. That smile lit up the room, and filled my heart.

Now, she is so into herself that she is rarely awake. My mom is fed mushy food because, in the final stages, the swallowing mechanism slowly stops functioning. We will not have her caretakers administer a feeding tube.

It is intolerable to me to watch this woman already dead in the ways we define life, eat, sleep, and defecate. She is gone, all but for the labored breathing. A piece of me is aching to hear her voice. I weep at my loss of her – I would even welcome her criticism.

As she deteriorated, she did demonstrate all the usual symptoms: reasoning, planning, judgment, memory, confusion, incontinence, inability to walk, problems with language. I was sometimes her sister and sometimes her mother. And sometimes in the end, she would look up from her lethargy and smile, “Hello my doll.” Then her head would drop and she would disappear – where?

Those three words will sustain me, as I move through my life. Years ago, my therapist told me that I love big. For me that’s the way I choose to live. Some say it takes courage to be so vulnerable. For me, it is freeing. My fellow travelers – my family, my clients, my friends – I love each of them for their own individual journey and the courage it takes to live it.

All of us will end up dead. While the road to that end is different for each of us, we have a mandate to live life well before we reach it. How wonderful for us and for those who love us, if we escape the often ugly ramifications of dementia.

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About Paula Susan

Paula Susan, MSW, LCSW, Masters in Clinical Social Work & Psychology; specialist in Trauma and Relationships since 1982. In 1991, I integrated the powerfully transformative process of EMDR (Eye Movement Desensitization and Reprocessing). Research demonstrates that it facilitates life-altering changes more efficiently and effectively than talk therapy alone. I teach skills such as communication and anxiety relief to improve connection with others. Over the decades, I’ve come to respect how much damage even small traumatic experiences inflict on our core beliefs about ourselves and the world around us. I consider it a privilege to help my clients understand and change what has undermined their happiness and their relationships. I do it with warmth, integrity, humor, and profound respect for those who care about the quality of this small piece of time we have on earth.www.paulasusan.com

5 thoughts on “Death by Dementia: The Long Goodbye

  1. Wendy

    Paula, What a liberating piece – thank you for sharing. I can empathize. I’m one of nine, and definitely was not mom’s favorite. It took me a good long time, but I eventually realized I like me, and I love myself for who I am and what I have accomplished – the big and the small. I am proud to say I am my father’s daughter! My favorite verses from Katy Perry’s song Roar…”I went from zero to my own hero” I work every day at loving big!!!

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