One Man's View of Mechanical Ventilation - A Letter From My Dad

One Man's View of Mechanical Ventilation - A Letter From My Dad
George & Angie Manseau June 18, 1954

Last week I wrote off-topic about my family’s decision to move Mom to hospice. The response to that blog was incredible. Making life and death decisions for our loved ones is a universal situation, something many people can relate to and empathize with. All of your personal stories and kind words have helped to heal my grieving heart.

As part of that grieving process, we had to sort through Mom’s personal belongings, both in her home and in her apartment at her Alzheimer’s facility.  Looking through all the photo albums, reading all the love letters that Dad had written to her, was emotional, but cathartic. It was also reassuring.

I say ‘reassuring’ because in one box of photos, I stumbled upon a two-page narration that my father, George Manseau, had written during his three-year battle with the incurable disease, ALS (Lou Gehrig’s Disease). His story, One Man’s View of Mechanical Ventilation, was an eye-opening revelation. In paragraph after painful paragraph, he described his decline, relaying for us, his heartbreaking journey toward death.

In late May, I had awakened badly congested. I tried the suction machine several times and I was starting to become panicky. I was hard pressed to remember anytime in my life when I felt like this. I wasn’t getting enough air. I started to feel claustrophobic and wanted to run outside and take a breath of fresh air. But I knew that wouldn’t work, so in my panic, I paced the floor. My wife sensed something was wrong and called our doctor. He arrived at our house in ten minutes. It was time to talk seriously about a tracheostomy, no machines, just a trach. I received a shot to calm me down. That was the last thing I remembered at my home.

I woke the next day with a brand new tracheostomy, but horror of horrors, I was on a ventilator. My heart raced. I was 100% on the machine and I felt like I was being suffocated. All my life, I prided myself on being independent and decisive, and here I lay a prisoner in my own body, pleading to be set free. My mouth felt like birds were nesting there. I was very warm and kicked off the covers, but that didn’t help. My discomfort was growing. The panic I felt at home was returning with a vengeance. I wanted to jump out of bed, rip off all the paraphernalia attached to me, and run for the nearest exit. They kept me somewhat sedated and packed ice bags under my armpits, trying their best to keep me comfortable. The doctor reassured me it was only temporary, and they would wean me off of it as soon as possible.

They kept increasing the air I was supplying through my own lung action, and decreasing the amount of air supplied by the machine. After 3 days, they deflated the cuff in my throat and turned off the machine. They suctioned me and cleaned my mouth, and I felt wonderful. I was able to breathe. What joy! I told my wife that day that I never want to be put on that machine again. We filled out our DNR consent forms together and have them ready in the event I am ever taken to a hospital emergency room again.

I am confident and comfortable with our decision. I am at peace.

Finding Dad’s letter shortly after Mom’s funeral seemed like a voice from beyond reaching out to us, helping to reaffirm that we’d made the right decision on our mother’s behalf. A DNR may not be for everyone. But by adhering to Mom’s DNR, transferring her from the hospital to the hospice, keeping her as comfortable and pain free as possible, and opting not to put her on the ventilator, we had respected her final wishes. Thank you, Dad.

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Like the Eastland Disaster Historical Society on Facebook for up to date information on the 100th anniversary commemoration on Friday, July 24th at the Chicago Riverwalk. Be sure to mark your calendars! I’ll be there. Hope you will be there, too.

Eastland, by Marian Cheatham

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