A question left in response to yesterday’s post was brief and to the point:
Ian, how do you go about deciding whether or not to publicize your dad’s final indignities?
It’s a good question. Thought provoking. I’ll try to answer, if I can.
I should say at the front end that I was asked the same thing when I chronicled my dad’s final two years while it was all happening. He had been taken to Queen’s hospital after a second fall at home, and then admitted to a bed in a room with four other patients in the Oahu Care Facility, a nursing home on Beretania Street, near the corner of Artesian St. That was his last stop. He was there just a month short of two years.
At that time, I wrote about my visits to his bedside, his life in the facility, his struggles with dementia, and my own coping with what was happening. I couldn’t avoid writing about family history, sometimes family dynamics, and occsionally about a family secret.
I probably did tread somewhat on his privacy, had he been in a condition to worry about such things. To tell you the truth, my mom probably didn’t know what I was sharing. My dad certainly didn’t. My sister, Bonnie, was supportive, and occasionally wrote on her own blog, a successor to another blog in which she previously detailed her husbands years-long battle with lung cancer.
I wrote primarily for myself, and still do. Witnessing through writing helps process the direct experience. I viewed myself as a chronicler, a reporter, trying to convey the intensity of our shared experience. I really didn’t worry much about privacy, although there were topics I avoided at the time and still sidestep.
And apart from a few questions like this, the feedback I received was uniformly positive and personal. Others who were dealing with aging parents and the scourge of dementia said they appreciated the insights they had gained. I didn’t write for that reason, of course. I wrote as a means of coping with an unfamiliar and painful end-of-life process.
And here’s the thing. Why should the end of life remain an unspoken realm that we enter with parents, loved ones, and ultimately for ourselves, unaided by the experience of others who have gone before?
In an earlier time, when death and dying wasn’t controlled by The medical-industrial complex, people died at home. Families dealt with the details, and such knowledge and the resulting skills were recognized as valuable and passed on to younger generations.
Today it’s much different for most of us. I’m betting that others will receive my sharihg of personal experience, and personal details, in the spirit in which I offer them.
It’s also fair to point out that, at this point, my dad’s gone. My mother is gone. Their siblings are all long gone. His longtinme girlfriend is gone. Their friends are dead. None of them are much worried about keeping the “indignities” of aging secret.
It’s not that I don’t edit myself. But it’s a very light edit, and perhaps uneven and inconsistent. Human, one could say.
Welcome to the mysteries, joys, and pain of this end of life.
And thanks for putting the question out there. Now I’ll have to go back to check how I first answered the question a decade ago.
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I really appreciate the honesty. My parents are getting older and while they’re still active now, there may be a day when my siblings and I will need to deal with similar things that your father went through. The less surprises the better our ability to react and act will be.
You wrote:
“I wrote primarily for myself, and still do. Witnessing through writing helps process the direct experience. I viewed myself as a chronicler, a reporter, trying to convey the intensity of our shared experience.”
and:
“I wrote as a means of coping with an unfamiliar and painful end-of-life process.”
I think think you put it extraordinarily well, and I salute you. Through your writing, you not only were directly helping yourself, but you also were providing important information for readers who sooner or later may have to deal with similar challenges.
mahalo
I am caring for my Mom with dementia and I really appreciate your posts.
I went to my Aunt’s funeral last month and it was heartening to hear that her family did what we did…kept her in the living room so she’d be in the center of life and never left out. You can learn together, cry together and heal together through shared experiences. Mahalo for sharing yours.
After my mom was evicted ( and wheeled to the curb ) when her 55 year land lease expired in Niu Valley she came to my condo in Kaneohe. I set her up in the living room and it was the BEST thing that we could have done. The Niu Valley house was big and her bedroom was far away from anything going on. BUT in Kaneohe -she was the center of attention and her new neighbors rallied around to support her and elder sit. Everyone loved her ! It really was the best thing we could have done for her. Last week my sister paid the pet sitter ( who is also an artist ) to do a portrait of my mom’s last cat. He outlived her by 2 years and we loved him for every minute of every day because he was a living link to her. This artist completely nailed her cat. It is 100 percent him. When I asked to see what photo my sister sent I was horrified to see my mom looking dead in the background… But that is just it – not every thing looks pretty. But we love our parents till the end and it is what it is. Accept it.
I have read your long account of your father’s passing some years ago-beautifully composed and obviously written with deep affection. I have also shared a similar experience up close with the passing of both of my parents, slightly more than a decade apart and found the shared observations of your father’s passing instructive to me own experience. That all said, I have great difficulty with the privacy issue absent a knowing waiver by the afflicted. One of my oldest and closest friends died in HNL 3 years ago a rather long and painful experience who , prior to his incapacitation, made very specific provisions who he wanted at his side as he slid into delirium and unconsciousness. Every passing from this life I have witnessed is unique. It is also profoundly personal. I am afraid I come down on the side of consent before i would feel comfortable in sharing something so intimate with strangers. Perhaps there is argument that in the case of a public person such as the death of a President there might be some exception. But even there- I am reminded of Reagen’s letter to the Nation of his long goodbye- where he choose to speak for himself of his affliction. And respectful silence followed.