My mom’s battle with Alzheimer’s finally came to an end yesterday. I’ll never forget the date and time I got ‘the call’: July 2, 2020 at 2 am. I knew as soon as the phone rang who it was, and what it meant. My sweet Momma was finally free from this disease that had imprisoned her for so many years.
Alzheimer’s affects approximately 50 million people worldwide. That number is only growing. Due to the varying symptoms, 1 in 4 people have not even been diagnosed, but are living with dementia. We don’t have a cure, and are far from understanding the cause. These are frightening statistics, especially in the case of early onset Alzheimer’s (diagnosed prior to age 65), which has a strong genetic component.
My mom and I were best friends. We told each other everything. We lived life looking forward to every visit, every phone call, and planning all of our future adventures. She was the best mom, and the kindest, most patient, and enjoyable person I have ever met. She was smart — putting herself through medical school, while living in a tiny apartment in a poor section of Mumbai. She was a dreamer — she had declared to her parents that she would one day leave India, and she made that happen. She was compassionate — not a single scrape on my knee went without a kiss, and not a single tear went unwiped. She deserved so much better.
Alzheimer’s stole my mom far too early. Looking back, I started seeing changes in her while she was still in her 50’s. It took us years to realize that whatever “it” was, was far worse than we thought, and it was only continuing to steal pieces of her away from me. And that is the problem with early onset Alzheimer’s. It occurs in people far too young to have cognitive decline. The symptoms aren’t always what we associate with any form of dementia. In my mom’s case, she was otherwise still youthful, and vibrant. I didn’t notice any memory loss or forgetfulness. But, her personality slowly changed, and that ate away at our relationship. She seemed more argumentative, and less interested in me. I was heartbroken. I didn’t realize that her brain was slowly failing her, and causing the changes. So I withdrew from calling so often, and visiting as regularly just to avoid the little comments she would make that hurt my feelings. Over 8 years after I started noticing these changes, we finally had her diagnosed. Her MRI showed that by 65 years of age, her brain had already atrophied (or shrunk) by 50%.
That is where Alzheimer’s began to change me, as well.
I have now lived with grief. Years of watching my beloved mom lose her sparkle, her enthusiasm, and her confidence. Her ability to perform simple tasks, call me, or hold a long conversation with me like she used to, was gone. And ultimately, she lost her ability to walk, speak, or even recognize me.
I also lived with guilt. Guilt for feeling resentful towards her and the disease. I was mad that she wasn’t who she used to be. I wanted my mom — the funny, happy lady who called me every day, and remembered every detail of my life. I felt guilt for not visiting her as often as I could have because I felt SO sad seeing her like that. I felt guilt for looking at her and not feeling like she was MY mom. She looked like her, but Alzheimer’s had stolen everything about her that made her mine. And ultimately, I felt guilt for making decisions that would facilitate ending her life gracefully, and not prolonging her suffering.
And I have felt anger. Anger that she was taken too soon, and that it happened to the wrong person. Anger that her life was cut short, that she was imprisoned in her body, and forced to continue living with no quality of life. She worked so hard, and sacrificed so much for my brother, Dad and me. So much so, that she never put herself first. I’m furious at her for not being more selfish. I wish she’d had more time to live, and be with me, and enjoy her grandkids. I’m angry at Alzheimer’s for being so cruel.
But, I have also grown on this journey. I’ve learned so much about me. I’ve made positive changes in my lifestyle, am mindful of living life to the fullest, and have a special interest in brain health.
The pain in my heart is not something I regret. It’s my mom reminding me how much she loved me, how much she has impacted my life, and how she will always be with me, moving forward and continuing to live on. I am choosing not to regret any of the grief, the guilt, or the anger. All of those feelings are OKAY.
RIP sweet Momma. I will love and remember you always ♥