My dad lived on a PEG tube for the last four years of his life. The last year of his life he was housebound. The last four months of his life he was on hospice, unable to perform basic tasks. I wrote the below journal entry in September 2015 with the exception of the last three paragraphs, which I recently added.
Please visit my dad.
You remember my dad; he was the life of the party, he could make anyone laugh. When I was five years old, he told me chocolate sprinkles were chocolate-covered ants. I haven’t had chocolate sprinkles since. He was the tall, good-looking guy all of my dates were afraid of. He had a zest for life.
Dad isn’t doing well these days. With each visit I say goodbye to a little piece of him. A few days ago, his hospice nurse told us he is showing signs of sundowning. Sundowning, which is “problems sleeping or increases in behavioral problems that begin at dusk and last into the night,” can be a symptom of Alzheimer’s disease and other forms of dementia. How can life be so cruel? He hasn’t eaten in four years, he is housebound, and now this?
Please, God, don’t let my father die unable to eat or remember his loved ones.
Our heart-to-heart conversations are a thing of the past. I sit next to him on the couch and watch him stare at the television and shake in pain. We sit in silence holding hands with tears building up in our eyes. My father ends each visit apologizing to me for not having the energy to talk. I don’t care, I just want my father in my life.
He screams in pain; his body is so frail. He no longer looks like the athlete you remember. He lives on a PEG tube connected to a feeding pump. His feeding pump runs 16 hours a day. He stays in touch with his friends and family through emails, although typing is becoming a struggle for him these days. Close friends and family visit and stay in contact. When he’s feeling up to it, I catch him watching the Ranger games, texting furiously. Whoever you are, thank you! You made him smile today. Please don’t wait for my father’s funeral to visit.
Please don’t let your fear of what-ifs hold you back from visiting. Please don’t tell us you would visit, but you are uncomfortable eating in front of a man who cannot eat. Please don’t tell us you would visit, but you know things are hectic.
This is Al, the guy who would walk 500 miles barefoot to visit you. So please, before it’s too late, visit my Dad.
My father passed away surrounded by family January 17, 2016. Immediately following his death, a very small group of people offered excuses rather than condolences. Perhaps the most unforgettable excuse was just a few days after my father passed; we were told, “I’m sorry for your loss. We would have visited but seeing Al so sick was really upsetting.”
We simply smiled and ignored the comment mainly because our grief is consuming us. But what I wanted to say is, “If it’s too much to handle for you, imagine his wife who shares a lifetime of memories with him or his children share his DNA and pride themselves on being ‘Daddy’s girls.’” Don’t you think my father’s immediate family would have appreciated your support?
Right up until my father’s last breath, he treasured his friendships and family. There is no script on how to act when a loved one is terminally ill. But one thing is for sure: the calls, texts and visits not only make the patient smile, it makes the family smile and realize their loved one is a legend. And my Dad was a legend.
This article originally appeared on The Mighty