My brothers and I decided to make a trip to South Carolina to celebrate our Mom’s 85^th birthday. 

The story of that road trip is part one of this story.  You can read it here.  It was my intention to write part two right after I posted the first part.  I started writing it, but couldn’t put it together.  I just felt like I didn’t have enough to make a blog post.  In retrospect, the problem was that the story couldn’t be written because it wasn’t over yet.  It is now.  Part two is about celebrating our Mom, her 85^th birthday, her life, and her death. 

The Long Goodbye

Mom had Parkinson’s Disease. By the end, she had struggled with it for 30 years. The disease took her from us, bit by bit, over those years until she became a shadow of the creative, intelligent, hard-working woman who loved, cared for, and raised us.  To be honest, the Mom we knew, the one we could call if we had a problem, needed advice, a recipe, or just needed to hear her voice, has been gone for almost 20 years.  It started when just calling her to talk about a problem would upset her too much, so when we talked, we always said, “everything’s fine,” even if it wasn’t.  And then she couldn’t remember those recipes.  And sometimes didn’t know who we were.  Then finally, on days when she was lucid enough to remember us, she could barely speak.

And so, as it goes in the cruel “long goodbye” of dementia, we have been mourning the gradual loss of our Mom for a long time now.  When she was able to communicate it, she would say, that she didn’t want to keep going.  She didn’t want us to keep planning events and things for her to look forward to, and live for.  “No more carrots,” she would say.  We understood.  She had so little quality of life, and just getting through a day was a monumental effort that wore her out more and more.   She wanted to rest.  She wanted to be done.  And by the end, we all wanted that for her.

Happy Birthday and Goodbye

Her 85^th birthday was February 26^th.  We decided 2 weeks before to make the trip for a birthday party.  We celebrated at my parent’s house on Saturday the 25^th with a meal, and a cake, flowers and balloons.  She was with us that day.  She smiled, laughed, and snacked on candy.  And I saw her a few times, just sitting and watching her gathered family as we made our silly jokes, and teased each other as siblings do—even when they’re old.  We sang happy birthday, and posed for a family photo at the dinner table.  When it was time to go, we all hugged her and told her we loved her, and, as we had each time for the last decade, we left knowing in our hearts that it could be the last goodbye.  This time, it was.

March

February turned into March, and my Dad said, “Mom hasn’t eaten since the party.”  A few bites here and there, but that was it.  She didn’t even touch the leftover birthday cake.  She was dehydrated and becoming very weak.  He took her to the hospital, but they sent her home the same day saying there was nothing they could do for her.

As the last week of March began, news from my Dad was dire.  Mom was winding down, and he was facing tough decisions about end-of-life care.  He took her to the hospital again.  We asked if we should come.  He said, “not yet.”  So, we waited for news at home for a few days.  On Wednesday, March 29^th, my brother Dave and I decided it was time to go.  We started out from our Nebraska home by car at 2 p.m. and drove as far as Columbia, Missouri. 

Too Late

We had waited too long.  At 4:19 the next morning I got the call in the hotel room.   Mom had passed away in the night sometime between 2 a.m. and 4 a.m. on March 30, 2023.

What I felt in that moment, was kind of a quiet relief.  Relief for Mom, that her struggle was over.  Relief for Dad, his long, constant battle to keep and care for mom was finally over.

We got back in the car and kept driving toward South Carolina.  We stayed until after the funeral a week later.

As that funeral week progressed, and still even now, I found myself grieving my Mom in a way that I had not expected.  My Dad had given me Mom’s wedding rings.  I wore them because I was afraid of losing them before I got home.  Every time I looked down at them, they reminded me of her.  They were a part of her for my entire life.  She never took them off.  I would turn them on my finger and see them on her hand.  And once again, I missed that long lost Mom who was my strength and my haven until Parkinson’s disease stole her away.   

Still today, I am glad for the release of the shadow of my Mom, deteriorated and punished by her disease.  But I mourn anew, the person who was my Mom.  I miss the artist, the poet, her dark sense of humor, her passion for animals, and her unconditional love for her husband and children.  I miss her voice on the phone that somehow could make my burdens seem lighter.

But truly she is not gone. I carry so much of her with me in the person that I have become.  I have her dark sense of humor and her creative nature.  I have her hands. I look very much like her, and I’ve been told that I even have some of her mannerisms.  She is a part of me, and I am her in so many ways. Barbara Knight, my Mom, will always live on in her children, her grandchildren, and on down the family tree.

We said the last goodbye on her birthday.  But now, there’s no more need for goodbye, because Mom will always be right here, in our hearts. And she is coming along with us to see where our journey takes us from here.

Take Action

If you knew my Mom, or if you would like to take action against Parkinson’s disease, please consider donating to the Kirk Gibson Foundation for Parkinson’s disease Research.  You can donate here in memory of Barbara Knight by clicking “Dedicate this donation.” Our family would be truly grateful for your contributions to the fight for a cure.