Having a case of the caregiver’s guilt

I’m reading a great book right now, a collection of essays about the dying process called, “At the End of Life: True Stories About How We Die.” Yes, it’s depressing but there’s also so much in there I can relate to. One particular essay that is haunting me is by a young resident who wrote about the night she lost three patients. One of them was an old man with dementia, who was listed as “full code” despite being in advanced renal failure and suffering from dementia. He had not had any family members visit him. He died with only the hospital staff around him, after they embarked upon an all-out assault on his body to save him in what they knew was a futile but legally necessary procedure.

It seems like there are many elderly patients that die in hospitals without family or friends by their bedside. Sadly, my dad joined this statistic when he passed away.

Certainly this is tragic, though just like when people judge families that put their loved one in a nursing home, there’s more to it beneath the surface.

I remember the first time Dad was near death, and being insulted when the doctor asked if I knew my father was in the hospital. He had been there about 4-5 days by then. My mom had been calling daily, if not twice a day, to get his status, while she was preparing to make the long, difficult trek to the hospital. My mom doesn’t drive and my parents’ car was taken to the junkyard when Dad stopped driving. Mom doesn’t have any nearby relatives or close friends and transportation options are very limited. It would have taken my mom almost 12 hours to get to Albuquerque on the Greyhound bus! So from Ruidoso, NM, she had to find a shuttle service that would take her to Albuquerque, which is over three hours away. My mom had to make sure the bills were paid and everything was in order before leaving home, because she had no idea how long she was going to be in Albuquerque. So understandably, it took a few days for her to get to the hospital.

Dad’s final home, but I have never stepped foot in it.

I had been calling daily, but I was all the way in Atlanta, and was knee-deep in a big work project. Obviously, my dad was much more important than work, but I also knew by then that there could be ups-and-downs in his health. I had been preparing myself for his death over the past year, but it was so hard to know if this was the moment that I needed to be by his bedside. There was also the $1000 last-minute flight price tag to contend with.

I ended up flying out there and it ended up being a false alarm. Still, it was the last time I had the opportunity to see my Dad alive, so I’m glad I made the trip.

But it’s the last month of my dad’s life that’s been gnawing away at me. For all of December 2011, he had not a single visitor at the skilled nursing facility that became his final home. My mom was preparing to visit him over Christmas when he passed away. His dementia was advanced at this point, and he didn’t speak much, but still, I wonder if some part of him yearned for company. By that point, I had already filed for FMLA (though eventually my application was denied.) But I wish now I had taken that time off to go visit Dad. What did I miss out on by not being by my father’s side during the last days of his life? I let finances and work responsibilities rule my decision-making instead of my heart. For once, I should have gone with my heart.

It is a deep regret, knowing that Dad died around strangers, though by that point, I was a stranger to him as well. These are moments and decisions you can never alter. You try to do your best, but ultimately, you have to live with the consequences.


Filed under Memories

2 responses to “Having a case of the caregiver’s guilt

  1. Pingback: Dad’s fate decided by bureaucracy | The Memories Project

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