“Our Mom’s journey through this terrible disease, dementia, began almost 9 years ago. I started writing about it a little over a year ago. This was all new to us. When I started sharing our stories they were filled with love, sadness, confusion and even humor. The humor is gone now and we do our best to get through one day at a time. It has now become our dad’s journey as well, as his body wears out from his age and days filled with sadness and loss. This is our story.
About 2 weeks ago, in the hospital before Dad’s pacemaker was put in, when his breathing was labored, his heart rate was 40, and his speech slurred, he laid in his bed holding my hand. He was sleeping as my two Aunt’s and sister Mary Ann were chatting with each other. I was listening to them when I heard him say something. I leaned in.
As clear as can be, he started having a conversation with Mom. The others couldn’t hear him, but Mary Ann saw my face. His eyes were closed as he started saying to her how happy he was they were able to spend this time with Jeff. Jeff is his son, my brother, who died of cancer 2 years ago.
‘Mary Jane, isn’t this so nice we have this day together with Jeff? He is a good son,’ he said. ‘We are so blessed to be together. We love you Jeff.’ His conversation with Mom and Jeff went on for a few more minutes. He was talking to his beloved Mary Jane, my mom, who was there with Jeff also. I couldn’t stop sobbing as he went on and on, as clear and as real as if they both were standing in the room next to his bed.
His eyes were closed the entire time he was talking and in between talking to mom and Jeff, he would pause and have the most peaceful smile on his face. One I haven’t seen on his face for so long. This went on for a few minutes. Without a doubt, Jeff and mom were with him and they were whole. They were healthy. They were together once again. He went back to sleep and I was overwhelmed by what had just taken place. That night and the next day I told everyone about the reunion dad had with Jeff and Mom and the peace that came over Dad, if only for a few minutes. It was enough to know they will be together again, and they will be whole.
After his pacemaker was placed and he seemed to be feeling so much better, they told us he would need to go to an in-house rehab facility to learn how to do things without using his left arm – so the wires would stay in his heart until they healed, approximately 5-6 weeks. He was not happy about this, but he went. While he was there he had an allergic reaction to one of his new blood pressure medicines. Luckily we were there with him when it happened. He was rushed by ambulance to the ER and a trauma team was waiting. His airway closed and a breathing tube was inserted which he remained on and under sedation for two days. He remained in the hospital an additional two days after they removed the tube.
Our brother Kris and his wife visited one evening after my sister Mary Ann and I left. When they arrived, Dad told them Jeff had been there to visit him. Kris started to tell him that wasn’t possible, but Dad assured him he was there. After my encounter with Dad in the hospital a few days prior, I didn’t doubt Jeff was there to see him. It made me happy to know Dad found peace in his visit since so little brings him peace anymore.
After his second stay in the hospital he was given the OK to head home to Mom. This was good news for everyone. The plan was to bring him by ambulance back to their nursing home. Kris and I sat with her and told her that her beloved Carl was coming home. She sat at the table in the living area for hours as the 5:00 p.m. drop off came and went. We were there for 4 hours waiting. She would ramble for a while, rub the table, and play with her fidget blanket during the wait. She would look at us occasionally. Then every once in a while, she would lean to the side of her wheelchair and look down the hall to the front door looking for her Carl. When he didn’t appear, she would hold her head in her hands as the sadness overflowed through her fingers. After a few minutes she would return to rambling and doing it all over again. We should have never told her a time he would return – we didn’t know.
When he finally arrived, he was on the ambulance gurney as he was pushed past us towards his room. We told mom her ‘Carl’ was home and we followed them to their room. The EMT’s had him bundled up in a blanket and had the straps around him. Mom looked at him and said, ‘Awww… Look at the baby,’ which had us all laughing. We told her she was correct – it was her baby. It was her Carl.
They moved him into his new recliner and got him comfortable. We pushed mom next to him and he was so happy to see her. Mom stared at him for a few moments. She doesn’t really smile anymore but we lose track of when things stop happening until they randomly happen, and we celebrate their return. Dad reached for her hand and she reached for his.
I asked her how she liked having her Carl back home and she made her eyes big and shared a smile. It was a moment. A moment she did not share again. Sooner than later she was staring off into the distance once again. Dad pretended not to notice how fleeting the moment was that his Mary Jane appeared, and then disappeared. He kept talking to her. Telling her how much he missed her. Telling her he loves her. I got up from sitting next to her because I’m am extremely lousy at pretending not to notice. And when I notice, it brings with it a flood of tears.
That was almost two weeks ago. They are back into their routine. Mom sleeps a lot and doesn’t eat much anymore. She rarely says any words. Dad is lonely. A lonely that can be felt in his voice when we are about to leave, his voice on the phone, and when he leaves us a message. Death by loneliness – that’s what it has come to for so many. He misses us the moment we tell him goodbye. He doesn’t want to be a burden, but he doesn’t know how to make the feeling of loneliness subside. It seems to be to be a fate worse than… I shouldn’t say it.
I am a person that hates to be alone. I watch my dad cry when I say goodbye, and now as it plays out in front of me, I realize the unbearable day in, day out, suffering that loneliness brings. I would love to believe it will get better, that we will have better days, but we know that isn’t true. What we do know is our time is the only thing that helps in some small way to make the days bearable, so that’s what we will give until they can spend every day with Jeff and never be lonely again.”
This story was submitted to Love What Matters by Becky Gacono of Annville, Pennsylvania. She is chronicling 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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