For those who have a loved one who is going through a disease that takes away their ability to be themselves is devastating. My heart is with your heart. My father was diagnosed with dementia and stage 4 breast cancer. We learned he had stage 4 breast cancer, extremely rare in men in April which essentially was one more thing to add to his failing health. He was 85. He could still talk, walk with help and he was still sharp as a tact. We were lucky, he knew who my mother, brother, sister and myself were. From that point forward, I knew, time was precious. I knew we didn’t have much time left.
Soon after, he started getting infections, falling, more frequent hospital visits, not able to leave his bed, sleeping more. He still had his cognitive abilities although he really didn’t understand what was going on. He knew he was wearing diapers, that we were helping change him, showering him, taking him to the bathroom; he knew that he was no longer in control of himself. He lashed out verbally which was normal for dementia, he said things that were offensive and shocking, and just completely out of character. As someone who prided himself as being a man of authority, of control, of knowledge, experience, a veteran, who put himself through college, who sacrificed so much for his family, worked hard to put a roof over our head, food on the table, who put his 3 kids through college – it was hard to see him start to lose what he worked hard to for and become, to lose himself.
Every night, two months before he died, I would wake-up at the same time, every night. It was 2:22 or 2:23. I felt the world was talking to me, telling me something. Would it be the time he died? I was up with the sunrise, beautiful rises, awake during the beauty of a new day dawning. The weight on my chest was with me every day, knowing it could be any time, any day. I started to think about my childhood, my life, all of those moments start flooding in: what didn’t you say, what do you need to say, how do I help my mother through this deep pain. You are in a state of constant angst, fear – your holding breath constantly. You are going through the motions although somewhere else completely. For me, I noticed I was in a space all by myself. This is a familiar place/feeling. I felt this when one of my best friend’s mother passed when I was in high-school. The world is moving around me and I am in this secluded bubble. I am hearing and seeing things differently. It is this weird between state, of knowing end of life is near while at the same time your eyes, ears, heart, mind and soul are more open and alive than they have been before; the morning sun and the evening sky have a much bigger depth and meaning. Human connection and real-honest true emotion and conversation are the most important thing. I felt the world holding me in this bubble; a place of truth, of love, of pain the space between the present, past and beyond. The space of meaning of humanity and life in its purest form.
I am alone and it is almost quiet. Nothing else exists outside of this bubble. It is like I am underwater, and I hear some background noise. I am where I should be. I am in my place of pain, loss, fear, and very clear that life and time ends, and we are not present forever. People we love will leave this place and will not be seen again or for a while. Their voice, their touch, their smile, their being. I want to go back, when I was 10 or 11. When my dad was healthy and strong. I wanted to have the Knowing with me then, ask more questions, be more grateful, spend more time.
My father was in hospice at a Veteran’s home. We cared for him at home about a month before he passed. We did everything we could to keep him home knowing that they day he left, would be the beginning of the end. In the VA, the doctor told us every day on this earth was a miracle. His body was weak, he was not eating, he had an infection, he had vascular dementia and stage 4 breast cancer, the decline and end were near. The odd thing was my father was not in any pain or discomfort, he was alert, talked to us and on occasion would have a small bite of something. He was unphased and seemed comfortable. One day near the end, I took him for a walk outside in his wheelchair. It was a beautiful warm day in September. He hadn’t been able to be outside as he had an infection and since the infection was gone, he was able to do so. We didn’t go far, enough to bring him around the grounds and take in some fresh air. Before we went back into his room, I noticed a leaf had fallen in his lap during our walk. I picked it up and told him we should keep it. I brought it back to his room. Maybe it was more for me knowing that may be the last time he experienced the air, the breeze, the sun, a walk with his daughter.
Over the weekend, we thought it was going to be the end. The doctor’s told us to prepare and would let us know my father was start the phase of dying, where the body starts to shut down and you may just continue to sleep and not be alert or awake again. My brother, mother and I were taking turns staying with him. My sister was home in Colorado although had planned to fly back early that week. I was with him that Saturday and he had been sleeping most of the day. I did not want to leave him as I didn’t want him to be alone if and when he passed. He ended up waking up and my brother stayed with him. I knew it was near. For me, the waking up early 2:23, 2:22, 4:30, continued. Was he going to pass on September 22nd, why did I feel like I was being told a secret and couldn’t tell anyone? I knew it was near. I felt like the Knowing was too much, I wanted to spend time with him although it got harder knowing you were waiting, waiting for turn, it was suffocating me. Although I held on knowing he was not in pain, he did not know he was leaving soon.
One day, I looked outside of my house, I noticed a tree that looked like a man’s face etched into it. I knew the time was near. That Sunday, I went to see my father. He was more alert, watching the news, and talkative. It seemed like he took a turn for the better. Maybe he will hold on until my sister came back home. As I left that night, it would be the last time I would see him and he would see me, his youngest daughter. I told him I love him, like I always did and knew he would not say it back like he always did. And something we started to say to him when we would leave, “ok, dad, don’t go anywhere ok – I will be back. I told him to not go anywhere and I would be back. He looked at me dumfounded and confused and said, “of course, where would I go.”