If you were only allowed to have ten people at your mother’s funeral, who would you pick?

How would you decide? Could you decide at all?

Imagine having to call those 10 people to invite them to your mother’s funeral. Imagine the backlash you would receive from the family members who weren’t invited.

Imagine there being no flowers, no guest book, no line of mourners coming to pay their respects at the funeral home. Imagine having only two cars in the procession to the cemetery.

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Imagine standing at your mother’s graveside service with a total of eight family members. Imagine each of them going back to their respective homes instead of a luncheon gathering at the conclusion of the service.

How sad.

How lonely.

How isolating.

My mom was diagnosed with Alzheimer’s disease in July 2010 at the young age of 62. She passed away on April 4, 2020, during the height of COVID-19 restrictions.

She died during a global pandemic, but not because of it.

Over the course of 10 years, I watched as Alzheimer’s slowly robbed my mom of everything she had, everything she knew.

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First, it took her short-term memory, her vocabulary, and her ability to drive.

Then, it took her independence, as she needed help getting dressed, preparing meals, and remembering when to eat.

It went on to take even more of her independence, as she needed help showering, brushing her teeth, and using the bathroom.

It wasn’t long before it was no longer safe for her to be home alone, as she would get lost in her own house, open the door for strangers, and have difficulty remembering how to use a phone.

As the years went by, my mom lost the ability to do anything for herself.

She could no longer read, write, or have a conversation. She could no longer call someone or answer the phone. She could no longer dress, bathe, or wipe herself. She could no longer stand up or walk without assistance and eventually, she could not walk or stand up at all. She could no longer get into a car to go anywhere. She could no longer feed herself and in the end, she could not even chew or swallow whole foods.

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For the last two years of her life, my mom did not take a real shower or bath because she was unable to walk up the stairs in our family home. She was clean, thanks to birdbaths, no-rinse soap, and no-rinse shampoo caps, but still—my mom had always enjoyed taking a nice, hot shower.

For the last two months of her life, my mom did not get out of the hospital bed in the front living room of her house. She received any and all care in that bed. She wore an adult diaper, as it was no longer safe to get her out of bed to use the bathroom. She could not sit up, roll over, or bend her arms or legs. She had to rely on others to turn her over, reposition her, and make sure she was comfortable.

For the last few weeks of her life, my mom ate only yogurt, applesauce, ice cream, and baby food. She barely ate or drank anything at all. She slept most of the day and all of the night.

In addition to all of that, my mom forgot the names and faces of all her loved ones. She forgot every memory she ever made in her whole entire life. She even forgot who she was. She never got the chance to really know or babysit her two granddaughters. She never even got to hold them on her own. She missed out on so much.

In the end, my mom passed peacefully in her sleep with my dad sleeping in the bed next to hers.

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After 10 years of battling Alzheimer’s, nine months of being on hospice, and two months lying in a hospital bed in her living room, dying, she didn’t even get a real funeral.

Alzheimer’s took everything from my mom and then, the pandemic took her freaking funeral, too.

It is so unbelievably unfair.

She deserved so much more.

During this time of collective grief, I feel the need to distinguish my own, not wanting my loss to be diminished by the collective loss being felt all over the world.

Sure, everyone is grieving right now, but I’m really grieving.

Not only am I grieving the loss of my mom and the loss of her funeral, but I am grieving 10 years of loss curtesy of Alzheimer’s.

I feel sad.

I feel lonely.

I feel isolated.

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I couldn’t even hug my sister the day our mom died. I didn’t see her or my nieces for two months after my mom’s funeral. My nieces are so young and my sister is so afraid of getting this virus.

It’s completely understandable, but it sucked nonetheless.

This is a time when we should all be together, looking through old pictures and sharing stories about my mom. We should be having Sunday dinners together and easing into the new normal of life without our mom.

Nothing about life is normal right now. Then again, I could say the same about the last 10 years.

Alzheimer’s creates a life of uncertainty. Things are constantly changing and you are constantly adjusting to a new normal. But with that uncertainty comes strength, gratitude, and most importantly, resilience.

Never in my wildest dreams did I picture my mom’s 10-year battle with Alzheimer’s ending this way.

I pictured a line out the door. I pictured endless floral arrangements. I pictured myself delivering a heartfelt, moving eulogy to a church full of people. I pictured a large crowd gathered at her graveside as we laid her to rest.

I pictured togetherness.

I guess in a weird way, togetherness is what I got. Not together physically, but together in our grief. Our collective grief.

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We will get through this. My family. The country. The world.

We are nothing if not resilient.

But it still sucks. And it’s OK to acknowledge that.

It’s OK to acknowledge all of the losses, big and small. I can grieve the loss of my mom and the loss of her funeral. Others can grieve the loss of jobs, proms, graduations, weddings, vacations, and the upcoming school year. And we can all grieve the loss of life as we once knew it.

Please just remember that while everyone is grieving something right now, some of us are really grieving.

Some of us are grieving for a different reason. If you know someone who has lost a loved one during this pandemic, make sure to reach out.

Their grief is not collective.

It is their own.

And they need you now more than ever.

 Originally published on the author’s blog

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Lauren Dykovitz

Lauren Dykovitz is a writer and author. She lives in New Jersey with her husband and two black labs. Her mom, Jerie, was diagnosed with Alzheimer’s disease in 2010 at age 62. Lauren was only 25 years old at the time. Jerie passed away in April 2020 after a ten-year battle with Alzheimer's. Lauren writes about her experience on her blog, Life, Love, and Alzheimer’s. She has also been a contributing writer for several other Alzheimer’s blogs and websites. Lauren self-published her first book, Learning to Weather the Storm: A Story of Life, Love, and Alzheimer's. She is also a member of AlzAuthors, a group of authors who have written books about Alzheimer’s and dementia. Please visit lifeloveandalzheimers.com to read more about Lauren’s journey.

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