For some people, the thought of being hooked up to a machine in order to live is daunting. No, more than daunting…more like being the living dead.
This was the view of my brother’s fiancee when my father was found unconscious in his apartment after suffering what was apparently a small stroke several years ago. She had worked in a nursing home and had seen many people put on a ventilator for the rest of their lives. She felt if he needed a machine to live it was his time to go.
I believe she was wrong, though well-intentioned. Thankfully she was over-ruled.
My father was on a ventilator for about a week. We were called in from out of state, and thankfully he improved. Unfortunately he was taken off the ventilator only the day we had to leave, so we were only able to talk that one day, but we had been able to communicate through notes, eye contact, holding hands.
That last day in the hospital was the last we saw of him. He lived another six months before passing away in his sleep.
Some would say, “Well, the ventilator only bought him six more months. Was it worth it for so short a time?”
Yes, it was. A lot of good things happened in those six months. He lived with his son, who had often lived with him. Their relationship had not always been smooth, and I think it did my brother a world of good to give back to his dad in that way in his last months. My dad was able to attend his son’s wedding. He had lost a leg while in the hospital, but even with his physical limitations, he had an enjoyable final six months.
There are some people who actually live active lives on a ventilator full time for years. One of my heroes, Jim Lubin, has been on a portable ventilator for about ten years, since being paralyzed from the neck down with transverse myelitis. He began the Transverse Myelitis Internet Club, which has been one of my lifelines since my own diagnosis. He set up and maintains the disABILITY Information and Resources site, a Quad List Discussion Group, a Vent-Users Support Page, the Transverse Myelitis Association’s web site and others, all with a sip-and-puff method of using the computer, which you can see here (Jim is the second man speaking and later demonstrates how he uses the computer):
Some years ago I read a book called Charlie’s Victory by Charlie Wedemeyer, a coach who develops ALS, or Lou Gehrig’s disease. When his disease began to impact his breathing, his wife took him to a hospital, where the doctor told her it was time to let him go. A nurse told her about portable ventilators, and the doctor was actually angry when Mrs. Wedemeyer told him she wanted to try the portable ventilator. But she insisted, and Charlie left the hospital having many more years…in public motivational speaking!
Living on a ventilator would not be anyone’s first choice of lifestyle, of course. But these and many others are proof that being on a ventilator is not living death.
I know there are complicated situations, and I don’t presume to have pat answers to them. Joni Eareckson Tada very ably wrestles with such questions in her book When Is It Right To Die? She discusses there the difference between sustaining life and prolonging death.
But for this particular moment, the main point I want to make is that, if the time comes when someone suggests a ventilator or other machine for yourself or a loved one, don’t immediately dismiss it. Machines can be a great aid to many more enjoyable and productive years.