My father is gone, but he hasn’t died. His situation is purgatory—what many families experience when someone they love suffers from a long-term illness or irreversible situation. Almost six months ago, he suffered a stroke. Within a day or so, he seemed alert and able to communicate to a certain degree. We could see there were issues but were hopeful he would make some sort of recovery. A few days later, the confusion, agitation, and frustration were immense.
He was not the same.
He spent some time in a rehabilitation facility. Things were up and down. We still did not know what was going to happen. Following rehabilitation, he went to a short-term facility. In early July, he had another small stroke that devoured my father’s last bit of independence and silenced his voice.
Prior to the stroke, he had been suffering from cognitive decline. It was getting worse, but he was able to go places with my mother and hold a basic conversation. It was painful to see him forget words and stop mid-sentence, but he could still play with my kids.
Days before the stroke, he was at our house for my son’s sixth birthday party, and the next night we all went out to celebrate my parents’ 45th wedding anniversary. It was sad at dinner to see he needed help with the menu, but he was still there.
When I visit him, I try to tell him stories about the kids. He sometimes responds with a blank stare, unsure of where he is. Sometimes a nod or a word with remnants of who he was. Sometimes he laughs, but we do not always know why. When he is in that sort of mood, my sister says, “He has his funny shoes on.”
Day after day, he is a sad man, whose dignity was stolen, sitting in a wheelchair and waiting. Waiting without the ability to enjoy a conversation, to communicate his thoughts, to tell his wife he loves her, to reach out and play with his grandchildren, to share a memory from his past with his daughters.
Anger, sadness, and frustration are emotions I feel, but mostly I am waiting, too, functioning with grief on hold.
There is no end in sight, and as much as the end is heart-wrenching and just plain hard, waiting is excruciating. Watching him slowly decline, wondering what he understands. What was once a sense of shock, has become a new existence. Guilt in each day, as I drink a cup of coffee, laugh at my husband’s joke, raise my family, focus on work, sit in traffic. Unlike my father, I am still a participant in life, even the mundane events—realizing how short life is.
My mother has been a frequent participant in grief on hold. For four and a half years, she visited my grandmother who called an ambulance and never went home. When my uncle got sick, she simultaneously cared for her brother, eventually in my parents’ house with continued visits to my grandmother. About a year after he became ill, my uncle passed away, and my mother had to break the news to my grandmother that she had lost a child.
There wasn’t much time between my grandmother’s passing and the realization that something was amiss with my father. With the stroke, things have reached a new level of sadness. It is painful to see him like this, to see my mother visiting him, talking to him, advocating for him because he can’t advocate for himself. Imagining myself in her place or his. Looking at my husband and thinking about the future.
My mother shares his health concerns when they come up, and I wonder, “Is this the day?” An odd sense of panic rushes through my veins, and though the father I knew is already gone, I am not ready to say goodbye.
Maybe grief on hold is the mind’s way of pretending things have not really changed. Although deep in my heart, I know life has already changed for good.