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.
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.
Julie, I, too, have thought of those loved ones that are not able to be together and to say their goodbyes.
We had a close friend pass away in a facility in Feb. before all this started. I don’t think she would have been able to handle the fact she could not have had visitors. We’ve often said, we’re glad she didn’t have to see all this.
I’m thinking about you, Julie. I hope you will keep the good memories of your mom tucked in your heart to get you through the harder days.
It is such a heartbreaking situation! After five years, I definitely have more good memories of my Mom than bad ones of when she was sick. Part of the healing process, I guess. Thanks so much for your kind thoughts!
I have had similar thoughts about both my mother and father. My father had dementia and was in a care facility so we wouldn’t be able to visit, which would have confused him and broken my heart. My mother passed away in 2000. I’m so sorry she missed the US electing a black president, but grateful she wasn’t around for Trump. If she were alive and able now (and there wasn’t a pandemic), she’d be on the protest lines (I miss her moral voice so much).
Thanks for sharing your precious memories of your parents.
A beautiful story, Julie. Much of it brought back memories of my own mom.
We truly do become orphans when our parents are gone, no matter our age.
I can’t even imagine how tragic it must be to lose your parent to this pandemic and not even be able to be there with them.
Thanks, Rosemary. So true, many baby boomer orphans feel that pain. Thankfully, my father is still alive at 87 and pretty healthy so far, so I have that to be grateful for. Thanks for stopping by and sharing your thoughts!
We lost an Aunt during isolation, the frustration and sadness unable to say goodbye to her is nothing compared to a close family member. I empathise for all those people suffering during these times, the carers, the loved ones and the ones who have passed. Your words are truly heartfelt.
So sorry for you loss, Sandra, and the fact that you were unable to say goodbye makes it even more tragic.
Big hugs to you and thanks for sharing your poignant story.
Thanks for stopping by. Sending a virtual hug back your way.
I had read most of your book earlier this year. I stopped before the final chapter about how to move forward. My father passed away in May. At almost 93 he was able to be in his home with me as his primary caregiver and an awesome small team of caregivers. As difficult as it was at times, I cannot imagine his final days in isolation in a facility. I don’t know if it has been a blessing to have to isolate since his passing (no services, no having to put on a brave face, no planning of an event and all that stress) or not (no ‘formal’ closure, no vast amounts of hugs, struggles with going through their home of 50 years). I am thankful for my close friends willing to create a bubble with me, so I am not totally alone. I am also thankful for your book, which helped me realize I am normal. I do hope to have a service or party to honor my father, but that seems a bit odd so long after his passing. So many new normals ahead……
Thank you for listening.
Nora, I am so touched you took the time to write and let me know that my book helped you through this difficult time. My deepest sympathies for your loss. I am happy you have close friends to help you through the mourning process, which is a bit different for caregivers. We need support during times like these. I wish you future peace and healing as you move forward.