Why I’m Grateful my Mom Died Before the Coronavirus

This month marks the fifth anniversary of my Mom’s death. The shocking thought has been bouncing around in my head the last few weeks: I’m so glad my mother isn’t alive right now.

My Mom and I at the beach as the onset of LBD began.

As the coronavirus pandemic rages on, I find myself thinking often about my mother who suffered with Lewy Body dementia (LBD). If there was any hope for surviving this cruel disease, of course, I would wish she was still alive. I miss my Mom more than words can say.

The experience of losing my mother excruciatingly a little bit at a time through dementia and then permanently through death was a harrowing experience. She was my best friend, confidante, and biggest supporter through life. How does one live without their mother?

And yet, it could have been so much worse.

If my mother was still alive, she would have panicked over this pandemic, the riots, and news about murderous hornets. She’d be glued to the TV watching every terrifying detail.

LBD is a cruel combination of Alzheimer’s and Parkinson’s symptoms that rendered my Mom helpless both physically and mentally toward the end of her life. The disease is known for tormenting its victims with vivid hallucinations, delusions, and night terrors. Sometimes my mother was in a complete state of panic because she thought a bear was in the laundry room. I can’t imagine the paranoid delusions these scary times would have caused if she was still here.

And God forbid, if she became infected with the virus, a distinct possibility with her weakened immune system. I cannot conceive the terror she would feel, confused by her dementia, without loved ones by her side during her final days.

I think of the painful yet poignant final moments with Mom before she died. My heart breaks as I hear about those forced to be separated from their loved ones during their final hours. They are being robbed of the precious time to share meaningful stories, feelings, and memories in the days, hours and minutes leading up to the moment of death. I’m horrified as I read and hear about people trying to say good-bye virtually, deprived of those final intimate moments, holding hands, and hugging their loved ones.

As I wrote about in my book, I’m Your Daughter, Julie: Caring for a Parent with Dementia, about a week before my Mom died, shockingly, she became more alert than she had been in months. “This feels like a party,” she said after noticing her sister-in-law and an old friend were visiting. She asked to put on her favorite red lipstick and rings and wanted a sip of wine. We happily granted every wish. My mother talked about taking a trip to Maui together and we played Hawaiian music in the background. Later that day, Mom went to sleep feeling content.

That was the last time we were able to have a meaningful conversation with her. It was as if Mom briefly came back to life to say her good-byes. But for that moment in time, family members and friends had a last chance to tell her how much we loved her. Not everyone has the opportunity to do that and for that precious gift, I am eternally grateful.

The day my Mom died, the hospice nurse warned me that my Mom would likely pass away within the next two hours. He was right, but during those final moments, we were able to express our love for Mom and tell her how much she meant to us one last time. We promised that we would all take care of each other after she was gone. We were able to kiss and hug her during our final moments together. Everyone deserves these precious moments.

Not to mention, people are being deprived of being with their loved ones who provide comfort after death. The sacred ritual of saying good-bye with funeral and memorial services with prayers and words of remembrance to honor the loved one was cruelly taken away.

I also think about the caregivers of loved ones with dementia. The statistics are brutal. One in three seniors die with Alzheimer’s or another kind of dementia while 15 million family caregivers care for someone with the disease. As if caring for a loved one with dementia wasn’t isolating and stressful enough, I can’t even imagine what these unsung heroes are facing during these times.

In tribute to my mother, who courageously fought LBD and in recognition of Alzheimer’s and Brain Awareness Month, I will be offering a Kindle edition of my award-winning book, I’m Your Daughter, Julie, for free June 15 to 19, 2020 for the AlzAuthors’ annual book sale.  Sharing my intimate story, this guidebook was written to help caregivers cope with the many difficult challenges they will face while caring for their own needs at the same time. To receive your free copy, use this link on any one of those days.

Are any of you caregivers during this pandemic? Are some of you thinking of your loved ones who died before the pandemic began? If so, feel free to share your thoughts and feelings in the comments below.