Ventilator-Assisted Living©

Spring 2004, Vol. 18, No. 1

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This article is adapted from a presentation at the Ninth International Noninvasive Ventilation Conference: “From the ICU to Home,” Orlando, Florida, October 23-25, 2003.

Transition: From Middle Age to Elderly

Lawrence C. Becker, Roanoke, Virginia

photo of Larry BeckerFor me, this transition is a work in progress. I never expected to make it, so I didn’t start to think about it seriously until about 10 years ago. Life expectancy in 1952, when I contracted polio was two years. Now, at the age of 64, it is 80 % of normal.

Beginning in the early ‘80s, I experienced a significant decline in physical strength, balance and stamina due to the late effects of polio. I compensated with new technology, schedule changes, wheelchairs, etc., until 1999 when I ran out of options.

Tipping point. I expected a steady, gradual decline through my 50s and 60s, interrupted by lengthy plateaus of stability. What I got, much earlier than I expected, was a point in the decline beyond which there was a sudden, huge drop-off in functional abilities. I suspect this is characteristic of the aging process for people with a major disability. Facing this is difficult, because it may force major life changes before you are ready for them, and before you appear, to the outside, to need to make them. If you are unprepared for it, the tipping point looks like a medical emergency.

Outliving support system. Some of us, now in our 60s, are discovering that we are the healthiest members of our families. This makes retirement even more fraught with worry, particularly if work has been part of the support net.

Secondary conditions. Coping with major secondary conditions, such as heart problems, requires even more care and re-rehabilitation. Coping with the increasing frequency of nagging, minor health problems also requires some adjustments.

Assisted living arrangements. Ventilator users face special problems in finding assisted living facilities. Many of these facilities are leery of ventilators, which are viewed as “life support.” I don’t think ventilator users can rely on finding a suitable arrangement when we need it.

Core identity. Many solutions that will be proposed by medical professionals, family and friends will not be aimed at protecting a ventilator user’s core identity, but rather at keeping one “safe and comfortable.” It is not wise to accept that uncritically.

As ventilator users, we need to consider what we cannot afford to lose, in the sense that such a loss would destroy our core identities. Next we need to insure that we preserve our core identities in any adjustments we make. For me, I was surprised that I could quite cheerfully lose my professorship, income, etc., as long as I could produce intellectual work in an office outside my home.

I do not think I will be able to adjust successfully to yet another major disability such as blindness or stroke. This has consequences for how I will deal with possible secondary conditions.

Reciprocal relationships. Beyond the tipping point, it is harder and harder to keep relationships with loved ones and colleagues genuinely reciprocal and “balanced” in the ways that have been so carefully worked out over the years. I believe it is crucial to maintain this balance. In my experience, trying to make incremental adjustments is useless — the entire relationship must be completely reconsidered. Schedules need to be reorganized around caregivers who are also aging. To some extent this requires a reversal of roles or exploration of alternatives that may be difficult for both parties.

Facing the transition from middle age to elderly is easy to postpone, and almost everyone cooperates in helping you postpone it. The boundary between middle age and old age is very wide and fuzzy.

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