“March 10 at 5:05 a.m. our mom was released from the prison dementia held her in for 9 years. We were given time to say our goodbyes. As we gathered around her, dad sitting next to her, we experienced something we are not sure we can describe. It was sadness, but it was a feeling of love that could be felt in every breath we took. He laid his head on her chest. He kissed her and he cried. All of that is what we expected to see. But it was the words. The words we wish we had recorded because we never want to forget them, and although we can attempt to share them, they will not be the same written on paper.
He told her how much he loved her. He said he wouldn’t trade one day of his life with her. He said he would marry her all over again. He said he will see her soon and to hold the door for him. Simple words that came through in his voice, a voice of pure, uncensored love. We had experienced the final sentences of the final chapter in Carl and Mary Jane’s Love Story, and what a story they had written on the pages of this thing called Life.
The next day as we sat at my sister’s house, with family starting to arrive from all over, Dad laid on the sofa to rest. I sat beside him on the floor and this happened –
Dad: ‘Can you wipe my eyes?’
This goes on a few times.
Dad: ‘Can you make my tears stop?’
Me: ‘I don’t think I can dad.’
We sat in silence as my almost 90-year-old father’s tears fell. I believe both of us realizing it was not only the sadness of losing his beloved Mary Jane, but he was going to be alone for the first time in 69 years.
Over a year ago I decided to start sharing our mom’s journey on a Facebook Page and called it ‘Our Journey Through Our Mom’s Dementia.’ We discovered so many people are caring for parents or loved ones with dementia. We realized we were not alone. A connection to so many people around the world began.
What do I do now? I have had a little over a week to think about what I will do with our page. This page has brought so many, literally from around the world, to our little blip on the map. What started as a page to share our story as a form of therapy for us, had become a place we went to find comfort in this long journey of a cruel disease. We received so much more. We were lifted up. You felt our pain, shared your love and stories. You took us in, and we are so grateful.
We discovered our story was the story of so many others. Our struggles were often your struggles and we were not alone. It didn’t make it easier but made us feel as if we were part of a bigger family. A family that understood the good days and the bad days. A family that felt the gut punches along with moments of laughter that slid into our space so the tears would dry for a moment. A family that watched as memories and voices of those we loved dissipated into the air as we reached and desperately tried to gather them to hold in our hearts forever. You understood our pain and helped to comfort us.
As you joined us on my mother Mary Jane’s journey, you also got to know her husband Carl, our dad, and the love they had for each other. Although her journey is over, his is beginning. A journey without the love of his life. What we are learning is, not only does he have no idea what that means, neither do we. He is lost and we are turning in circles hoping the answer appears so we can get off this merry-go-round and attempt to move forward with what is best for him. Let’s just say we are all getting dizzy as we continue to wait for direction.
These are some of the questions we have. What is best for dad? Where does he want to be (other than with his Mary Jane)? How will he be once everyone heads home? How much do we encourage him to move forward? How long do we do everything for him?
These are some of the things we have learned in a week.
Dad does not sleep well and when he wakes up, he doesn’t want to be alone. So, when he falls asleep as we rub his head or back, we find ourselves tip-toeing backwards out of the room he is staying in at my sister, Mary Ann’s, in the hopes he doesn’t wake up (which brings back memories of years ago when our children were little). There are going to be good days and bad days, good moments and bad moments. He does not want to be alone during the day either. Although mom was gone, in so many ways he never felt she was gone. Forever gone is very different than dementia gone.
So for now, we will continue to share this journey we are on. It will be different, and we are flying blindly as we struggle to see only one where there was always two. We will do our best to fill in the empty space left behind, knowing it will be impossible. We will move forward with love, and remember our luck to be part of one of the best love stories we could have ever imagined.”
This story was submitted to Love What Matters by Becky Gacono of Annville, Pennsylvania. She has chronicled her mother’s dementia journey on their Facebook page, Our Journey Through Our Mom’s Dementia. Submit your own story here, and be sure to subscribe to our best love stories in our free newsletter here.
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