Long goodbye

I had no idea my father would be my first patient when I decided, at the age of 50, to go to nursing school. It’s funny how life sometimes turns out completely different from what you thought it would be. Before I graduated in spring of 2010 I decided I would move home to Miami to help care for my father who had become a hospice patient at home with the official diagnosis of end stage cerebral degeneration, also known as dementia. I was a full-time nursing student in the Ithaca, NY area and felt it was the right decision to come home after graduation to help my mom care for my dad. I have always lived my life by following my heart rather than anyone’s idea of how I should live and my heart was telling me this is what I needed to do.

The idea began to form when I was home the Christmas before and saw how he had declined. At that time my father was walking, unsteadily, with his cane and refusing to use a walker, which he gravely needed. It took him a long time to do anything. Though his cognitive abilities were diminished, he was fully verbal. He was experiencing confusion and some paranoid delusions but he still knew who we all were. His attitude was positive and upbeat and he never complained about his predicament. He voiced frustration but expressed it in a humorous way. Years before macular degeneration had taken away his ability to read but now I noticed he was no longer listening to books on tape, something he’d previously done daily.

He was incontinent of urine and was wearing pull-up diapers which he was mostly able to manage on his own. My sister Susan was the first of his three daughters to help with his diapers. She did it naturally, simply doing what had to be done. I was dreading my first time but the day came, I helped him and thought “well, there’s my dad’s penis. Interesting.” It became the new normal. The new normal is what I like to call things in life that change and I have to get used to doing something in a new and different way. The Christmas of 2009 was when I realized, way down deep, that my father was leaving us. The man and the father he had been was beginning to fade. I’ve always believed some people come back full circle to infancy at the end of their lives and I knew then my father was going to be one of those people and that this was the beginning of his long goodbye.


My dad passed away on January 20th at 10:40 A.M. Some days I might think about him a few times, other days I may not have even a conscious thought of him. Today is the kind of day where I am viscerally aware of the loss of him. The space he used to inhabit that is now empty. The physical space in the family room where his hospital bed was as well as the space inside of my heart. Yesterday I looked at photos of him a month before he died, days before he died, the night before he died, then after he was gone. I need these photos to remind me of what I shared with him those last months of his life, they are a testament to the moments that have changed me and formed the woman I am now.  Those final days are seared into my cells yet I find I cannot recall them exactly as they were. What I have are the photos, they tell his story because I do not want to forget it.

The night before he died, watching him and realizing he was finally, after so long, leaving. Sitting up with him, watching his increased breathing, the profuse sweating, feeling helpless to take away this difficulty that was his body trying to sustain itself for a few more hours. The profound sacredness of that night after my mother, exhausted, finally went to bed. After the hospice nurse came to assess him and to order the continuous care I realized I needed. Putting on the special music he loved that I had chosen for him to die to. Playing it hour after hour as I watched him slipping away. Sitting by my father’s bedside waiting, watching, praying for a gentle release, and knowing that sharing this last night with him was the most important thing I would ever do in my life. Night turned into morning. The sun came up. The nurse arrived and two and a half hours later he was gone. I have the photos to remind me of what happened, to show me that being able to say goodbye to my father was his final gift to me. Godspeed dad.