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A Father’s Smile Is Worth a Thousand Words

The last year of my father’s life

Last year my father was diagnosed with sudden onset Lewy Body Dementia. Within a two week time period, he went from living and driving independently, to being constantly confused and unable to walk. As a nurse, I’ve never seen anyone decline so rapidly from dementia. He passed away eight months after his initial diagnosis.

He refused to let us shave him. He liked having a beard for the first time in his life. He became violent if we attempted to trim or shape it. He had always wanted to grow a beard, but it would grow bright red every time, so he decided it was better to be without it. Finally, one of his lifelong wishes came true. With a full beard, he was happy and that’s all that mattered to me.

Most of his days were filled with pleasant confusion. His delusions were generally happy. He imagined family members, who had predeceased him, being in the same room and talking to him. He often had hallucinations of his wife, my mother, who passed away five years prior to his diagnosis.

The happiest delusion was him believing he lived with my brother (his son). My brother is disabled and lives in a nursing home. Neither my brother nor my father were stable enough to leave their facilities. So they were unable to see each other for a long time. That was probably the most heart breaking aspect of my father’s illness for me. I was concerned about my brother. He was more than a son. He was my father’s best friend.

My dad had no idea when he held my brother for the first time, my brother would later become his best friend and his greatest advocate.

Sometimes I had to laugh to keep from crying. The most memorable moment of my father’s confusion was a phone call he placed to me.

Dad — “Hey. Did they tell you what happened?” Me — “No. What happened?” Dad — “I’m calling to let you know that you passed away.”

I repeated his statement back to him to be sure I understood him correctly. He confirmed that was exactly what he said, and precisely what he meant. His confusion had reached a point where no reality based feedback could redirect him. There was no way to reorient him. However, he wasn’t emotional or upset. His statement was made in a very matter-of-fact tone. He was simply conveying a message. He wanted me to know I had died, because he thought I might want to attend my funeral.

Attending my own funeral. Now that’s something that never occurred to me, for obvious reasons. He went on to further explain my funeral arrangements, who would lead the service, etc. He also thought I might want to send flowers. Can you imagine everyone’s surprise when I show up at my own funeral?

I actually recorded that phone conversation with my father. I recorded every conversation and every message from him during his last year of life. I knew I would miss hearing his voice and his unique inflections when he spoke. I rarely listen to them, but they’re there if ever I want to hear his sweet voice.

I recorded a legacy video of him answering questions, interview style. What a joyous video with unexpected laughter and impromptu surprises! I learned things I never knew about my dad. My brother and I have thoroughly enjoyed having that special memory of him. I’ll share about it in another post with some ideas for anyone who’s interested in filming one of their own.

I shared this with everyone, because this happens to people every day. Their lives are turned upside down by a disease for which there’s currently no cure. They lose their home, their car, their independence, and sometimes their right to make simple choices.

We never know what might happen to us in life. The confused person is often the last person to realize they’re confused. Compassion is something we all can use. It’s something we can give, and it costs us nothing. Yet it brings great rewards. It’s reciprocal.

Mia Verita, 2022

Thank you, Dr. Preeti Singh, and all the hard-working editors of Reciprocal for hosting this story.

I’d like to share a story by Carmellita, that compliments this one. It shows we need to take care of ourselves and have boundaries that bring us peace.

I’d also like to share this article by Dr. Fatima Imam. Sometimes nature is just what the doctor ordered for patients and caregivers, alike!

Mia Verita loves being an advocate for those who are sick or suffering. She takes great pleasure in sharing compassion with the world. She enjoys photography, sketching, writing poetry, and sharing inspirational stories.

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