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Book Talk: Caring for a mother at the end

TOKYO (Reuters Life!) - Sean Manning was about to turn 27 when his mother collapsed with a heart attack and then was diagnosed with cancer, the start of a 13-month hospital odyssey that ended in her death aged just short of 60.
/ Source: Reuters

TOKYO (Reuters Life!) - Sean Manning was about to turn 27 when his mother collapsed with a heart attack and then was diagnosed with cancer, the start of a 13-month hospital odyssey that ended in her death aged just short of 60.

An only child, Sean spent most of that time at her bedside in Ohio, shepherding her through a medical labyrinth to hospice care -- a journey he chronicled in "The Things that Need Doing."

Sean spoke with Reuters about his book, which interweaves his narrative with memories from his childhood.

Q: Why write a book about this time in your life?

A: "I was really doing it to try and get a lot of this stuff out of my head, because I was just thinking about it constantly. Also, I felt that a book of this nature hadn't been written. There are various books that tackle the perspective of grief but they haven't been written from the point of view of a man in his twenties, and I thought that I had something unique to offer in terms of the story itself.

"Also the healthcare debate was just starting to pick up around that time, and from the expenses alone -- having incurred $2.5 million in hospital bills and how insurance took care of all but $3,000 of that, that was something too. Just little things, such as signing a "Do-Not-Resuscitate Order." It's wrong to say they're mundane, but there's just all these practical things that you have to do in a situation like that that go beyond the grief stage.

"I thought that if maybe I could put it in a guidebook almost to help people along the way. Things that I just wasn't prepared for, whether medical or having to get my mom signed up for disability. Things that don't occur to you because you're just so grief-stricken."

Q: It must have been searing to relive it.

A: "In hindsight, I feel a lot better as a result of it (writing). I think going through it was pretty agonizing to the point that I really don't remember writing any of it, which is bizarre. I can remember vividly pretty much every day in the hospital... Certainly hearing from people in the medical community or who have gone through the same experience that the book helped them, that means a lot to me."

Q: Did you keep a journal or write things down?

A: "I tried it a couple of times in various waiting areas and I just couldn't do it. Each day it was just so hard to reflect on anything. She could have died any day, there was never any sort of lull. I was busy so much of the time, and much of it was spent just holding her hand. by the time I got home I was just too exhausted, both mentally and physically, to try and put any of that stuff down. I knew my aunt had been taking copious notes about the day-to-day stuff, which I thought would suffice as my mother got better enough to want that account, or if I did. But at the time it didn't really occur to me that I'd be writing this as a book, that only happened after my mom passed away.

"I had come back to New York and it just felt as if I wanted to start writing something, and this was the only thing that was on my mind. I thought I'd try to be productive about it, rather than sitting around stewing, and see if I could write a good story that was maybe helpful to others but would also maybe exorcise some of the trauma I had suffered."

Q: How did you actually write it?

A: "I found that as I started writing, the hours I kept mirrored the hours I kept in the hospital. I wouldn't start writing until around 4:00 in the afternoon, and then I would write for a couple of hours, break for dinner and then go back to it. I'd end up writing until about midnight or so, and then I'd need a couple of hours to unwind because it was so emotional. So I wouldn't get to bed until around 3:00 in the morning."

Q: What kept you going?

A: "I think it was the idea that this would have made my mother proud. She'd always wanted me to be a writer, and she had always supported my efforts. I think it was a tribute to her. She had been a public health nurse and she had devoted her life to helping others. She'd be so happy that her experience could do that for somebody else.

"I would often look at old photo albums, times when I was having doubts, and I'd feel buoyed by them, seeing those photos and images of her. I definitely did feel like she was there --but I feel like that every day.

"I think the biggest thing for me was the idea of the hospitalization, and that our loved ones are getting older, and there's been a lot of talk about end-of-life care. Most of the things that are being discussed are from a fiscal policy angle, and there haven't been many things from the angle of people that are enduring this. When people start to become statistics, numbers, then you're kind of missing the point."