Let me tell you why I'm such a lucky guy

Roughly one in four U.S. households have someone who must take care of another person living under the same roof.

No pay. No benefits. No vacation.

Typically, the household consists of an elderly woman caring for her disabled husband. They are poor and without friends.

Not included in that group are those who are lucky enough to be able to keep working, who have professional caregivers or who have a spouse who works.

Disability and illness, however, don't discriminate. As most regular readers know, I have ALS, or amyotrophic lateral sclerosis, also known as Lou Gehrig's disease.

For nearly 12 years, ALS has been a constant companion. Its effects are pervasive and noticeable. I use an electric wheelchair to get around; breathe through a tracheotomy and portable respirator; and write this column using a laptop computer equipped with an infrared switch triggered by twitching my cheek.

Being a caregiver is not an easy job, even when taking care of someone as easygoing and fun-loving as I am.

Sometimes I marvel at my wife's energy, determination and strength -- the characteristics she brings each day to her job and to our home so that I can continue writing this column and our two sons, 16 and 21, can continue whatever it is they do to take up space and consume oxygen on our home planet.

We have help, of course. Because of a long–term care insurance policy purchased through my work and health insurance, I have the care needed to keep me alive and breathing, through a portable ventilator, anyway.

At present, two graduates of the Sarasota County Technical Institute practical nursing program help out when my wife is at work. Within a month or so we'll lose one because he's moving to Ohio. The other one is starting school at MCC's RN program. So, we won't have him for as many hours as we would like.

In many respects I consider myself lucky. Not lucky in the same way as my new best friend, the North Port resident who won the Lotto a few weeks back. But lucky nevertheless.

I'm not sure my wife and sons share that sentiment.

And while I know that ALS has no effective treatment and no cure, it hurts to see those you care about so deeply feel the effects of this disease.

For example, last Sunday was Mother's Day. Yet while others crowded into restaurants for brunch or fought the early birds for that parking space, my wife had to eat Chinese takeout.

No breakfast in bed. No flowers. No shower of gifts for someone who clearly deserves it.

Instead, she had to lift me out of bed, give me a shower, shave me, brush my teeth and feed me breakfast. As I said, I'm lucky.



Rich Brooks can be reached at rich.brooks@heraldtribune.com.


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