It happened a few days before Mom departed her body. She laid in her bed and looked dreamily at the ceiling. “Home soon,” she said softly as if speaking to some unseen person. “Home soon,” and she smiled faintly and exuded a sense of deep calm. Sitting on the bed next to her, I mused on her comment. We had never used the term “home” for the afterlife or heaven, but she clearly saw it that way. It was she who introduced me to this idea — only one of her many parting gifts before she had free reign to teach us whenever and whatever she chose. She would soon be unrestrained by her body.
As we thought on what to share with you today, it seemed that we were getting ahead of the story, that we needed to give context to the progression of events. We would have preferred to write only of the miracles and joys that emerged later, all so full of love, but this would not give a full picture. So, it is even now with tears that we tell you of the weeks preceding Mother’s departure.
Another bout with heart failure had landed Mom in the hospital. Only a short time before, she was hospitalized and then needed to have rehab time in a nursing home. It was there that her indomitable spirit began to waver. Even though she had been through much in her life time, now, at age ninety-eight, it was the first time I saw signs of giving up. It was heartbreaking to witness.
I was with her everyday, trying my best to make her happy. I decorated her room with objects familiar to her and then placed autumn leaves and Thanksgiving, then Christmas decorations everywhere I could. We brought her home for dinner to sit by the fire and hold her precious cat. But she felt abandoned in this “home” where she lived and not of her choosing. She had grown too weak to walk and was now reliant on a wheelchair. One by one, her freedoms were disappearing. We were both desolate, especially knowing it was now next to impossible for us to care for her at home.
The dreaded recognition sunk in. Even in this highly acclaimed facility, she was not treated with dignity or given the attention she deserved. I spent much of my time asking staff questions like “Why did you plunk her in her wheelchair with everyone else in front of the TV running old black and white films? She asked you to please take her back to her room so she could read and do puzzles?” Or “Why did you leave her in her room to read and not turn on any lights when you knew she cannot reach them herself?” Or “My mother is lucid and aware. She objects and is afraid when dementia patients are allowed to roam into her room and her bathroom, open her closets and drawers and no one makes sure they leave.” We were saddened and angry that she was not being seen as herself, a person deserving proper care and attention. I was trying to fight a battle that could not be won.
Given the incompetence, it was no wonder mother landed back in the hospital.
Being in the hospital was not much better. Many days it seemed she would not live until another. I, like most caregivers, was burning out rapidly, in a mad rush to improve the situation and give my mother some peace and happiness. Finally, we made the decision to bring her home with us. We wanted her to be with us, and safe. This was the home she had grown used to. It was the only place she wanted to be. She knew we would try our best to support and cheer and help her. She would soon be back in her bedroom and with her frisky and beloved little Siamese cat.
We promised her that, no matter what happened, we would not send her back to the hospital. She was with us to stay.
I sat with her at the hospital until the ambulance came to drive her home. It was just after Christmas (the most bleak and sad Christmas of my life and probably hers as well). We had filled her room with holiday decorations and the fluffy talking toys she and I used to amuse ourselves. We begged the hospital doctor to let her come home for Christmas Day. A festive dinner was planned, the tree she had helped us decorate just weeks ago was bright with cheer, her carefully wrapped gifts were under the tree.
I had hope she had lost track of time and would not remember it was Christmas Eve, a time special to us since my childhood. I left her at the hospital and cried all the way home. My husband and I were determined to have Christmas Eve together. On one of the many calls I made to the hospital to check on her, one of the nurses told me they heard my mother playing with one of the Christmas toys. It filled the room with merry songs of Christmas. Then, I was told, Mother asked her if it was Christmas Eve. They turned her TV to a celebration of mass. Again, I cried at thinking of her alone, lying in that lonely room watching mass. She wasn’t even Catholic.
On Christmas Day, I entered the hospital through the decorated halls and the staff wearing Santa hats. I was all ready to bring her home for her few hours of celebration. But the doctor stopped me outside her room. As wheelchairs rolled passed me, with patients going out to celebrate the day, the doctor warned me. Those few hours at home would cost her dearly. Did I want to take such a chance? Sadly, I concurred. So Richard and I packed up whatever foods we had prepared that could be transported to the hospital. We tried to make merry, serving her foods she liked to eat, like pate and Brie and crackers and apples. We all tried hard to “make merry,” but Mother never even opened her presents. She was too tired.
When Richard and I returned home, we ate a bowl of cereal and went to bed. We could see that the hand writing was on the wall. This would be Mother’s last Christmas with us. We decided that we would bring her home with us. We had always felt that we could make her well and take care of her best with us. But this time, we would be bringing her home to die.