God Knows Why

A Lighthearted Glance at Spirituality in Family Caregiving

Published By Jonathan Taylor with Lisa Rowan at Smashwords.com

DISCLAIMER: While our intent in writing these books is to offer our readers ideas on improving the interactions between care givers and recipients, and while these ideas worked well for us, nothing in these books is intended to be medical or legal advice, psychotherapy of any kind or professionally rendered guidance. We leave that to licensed professionals.

Copyright 2010, All Rights

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Cover photograph by Miriam Haugen, on the web at http://www.haugensgalleri.com/

Dedication

To Lisa's mother, Lillian Johanson, who saved Lisa's life as a baby so that I could marry her later. For her strength and courage in the face of a challenging upbringing, for her willingness to overcome her original pain and model strength of spirit for her daughter, I will be eternally grateful.

Acknowledgments

We want to thank Suzanne and Evan, children of our heart, whose support and assistance made many of our caregiving experiences better for their participation. And to their children, who have learned tolerance and patience as a result. The caregiver's mission represents a truckload of work for everyone involved, and having support from my adult children made what might have been a very difficult decade a lot easier. To see their children carry on the mission is satisfying beyond words.

Hazel and Thom Ritter, Jon's mother and step-dad, have also blessed us with support and assistance without which we would have been hard-pressed to survive. The burdens of family caregiving are managed best by sharing them with any family member who will take on the load.

To our many other family and surrogate family members, whose love and support has made our lives better in a million ways, we also offer our eternal gratitude.

Introduction

Years ago, I became obsessed with my physical condition and took up bicycling around a ten-mile circuit that began and ended at my home at the time. Every day, I was out there peddling, working up a sweat, trimming down, looking good. It went on long enough that I started putting my faith in how important it was that I get and stay physically fit.

Then came the afternoon of my last ride, two miles from home, sweating and doing the work. As I crossed a residential side street, the car approaching from ahead of me turned toward me as part of a left turn down the street I was crossing. By the time I knew what the driver was doing, the car was so close I had to turn my head to look from one headlight to the other.

Sensing impending doom, I started to think "Oh, Poop!" when I heard a booming voice inside my head. It said, “NOW, LISTEN!” just before impact.

I cleared the hood ornament, rolled up the length of the hood and slammed back-first into the windshield, shattering it.

That was the first time I heard God address me directly.

Months passed before I had really recovered, and the experience left me with only two lasting aftereffects; 1) a small numb spot on the ball of my right foot and 2) a percentage of my attention that constantly listens for my next divine message.

Since then, I've only had a couple identifiable episodes, whispered caveats at crucial moments warning me not to do anything stupid. I once had an insight that came in the form of an admonition not to “push the river,” a reference to my tendency to force something to change that did not want to change when I got bored with the status quo.

For years, I lived without any obvious divine intervention, until the evening I was sent to pick up a young lady in a wheelchair and bring her to the reading group I attended. On that night, I heard the faintest whisper telling me, “This is important.”

Thus began my life as a caregiver.

Many times in the past, I tried to see or feel or find or grab something that I hoped would bring me a sense of deep, personal fulfillment. By the second time I had taken Lisa to and from our reading group, I had found an activity that truly delivered.

Through caregiving, I have come to believe that there are only three holy endeavors in which human being can engage:

1. We can increase the inventory of love in the world. (God is Love)

2. We can increase the inventory of forgiveness in the world. (Forgiveness is Divine)

3. We can decrease the inventory of suffering in the world. (We are our brothers' keeper)

Family caregivers have the opportunity to do all three.

Chapter 1: Weighing the price and the rewards

One of the hardest things to learn to do when I became Lisa's caregiver was to perceive the world as if I was in a wheelchair. I had to think as if someone was going to have to help me do everything an able-bodied person could do that I can't. It took months before I could do it well, and in that time I injured Lisa every time I failed.

Someone once said about greatness that there are those who are born to it (who choose it for themselves) and those who have it thrust upon them. The same thing applies to becoming a support person for the disabled.

Society owes a huge debt to (and God loves) people who take jobs assisting the physically disabled, opting to do a strenuous, challenging and sometimes thankless job, often for mediocre wages. What rewards there are for this work often manifest outside the paycheck, in personal satisfaction and fulfillment that comes from making someone’s quality of life materially better.

But the work is often thrust upon loved ones after an accident or illness or traumatic event that leaves a family member physically challenged. Without time to prepare for the changes, the state of overwhelm can set in pretty quickly on people who end up in supporting roles. This is also true for the disabled who were able-bodied before disaster struck.

Shortly after Lisa and I became friends, I realized that there was nothing in my life that challenged me in as many areas as her disability challenged her. I learned to listen to her cope with or complain about the little problems I gave her constantly; the pile of clothes on the floor, the dresser drawer I left open, the toilet paper roll I didn’t change.

The list never ended, and the longer we were together, the worse it got. After a while, I started to wonder if I ever did anything right. It was as if I had to rewrite my entire autobiography and become a different person--neater, more thoughtful, more patient, more sensitive, ... smarter. I became Overwhelmed.

After ten years of on-the-job training, I can offer some proven advice to anyone who is or will soon be wearing shoes like mine. And not just shoes; some of these realities fit like suppositories.

It can be fun to rage against the wind, but sometimes resignation is a more sane choice, and the sooner the better. Either you are going to do the work or you aren’t. Pick one and commit to it. If you can’t carry the burden, your disabled loved one will just have to find someone else. If that can’t happen, quickly resign yourself to the fact that you are elected.

Especially if the challenged party used to be able-bodied, it falls to the support person to be upbeat, optimistic and forward-looking. Don’t fake it. Of all the flaws you might hide, phoniness will cause the quickest damage. Better to empathize. Try to imagine what your attitude would be if the situation was reversed.

Let people have their feelings on the one hand, but then do something to make a bad situation better. Find others who have been there and come through the tough early period, who came out on the other side. Both for the newly disabled and the neophyte support person.

Set a time limit for self-pity (Lisa needs ten minutes). Then take turns. It’s work, but it’s important that the disabled person and their supporter are not both wallowing in self-pity at the same time.

The same is true about just having a bad day. Don’t both have the same bad day. Compare notes. Who had the worst day? Loser had a good day whether they like it or not.

Take comfort in the fact that you’re not exaggerating. This is a tough situation and it takes tough, strong people to get through it.

The good news is that there comes a point when the period of adjustment is over. You look at yourself and realize how much more you like the new tougher, stronger, more patient/sensitive/thoughtful smarter person you’ve become.

Chapter 2: How To Find Those Friends Indeed

It was always obvious to me that I felt wonderful after doing anything for Lisa that she couldn't do for herself, and just as good when I helped her mother. It took a while for me to learn that that warm fuzzy feeling was a universal result of performing an act of compassion, and it was not exclusive to me.

After ten years of watching Lisa’s life direction take me down mine, many lessons compete for the title of Most Important. It would take months to do an inventory and ranking, but here’s one big one. Two kinds of people inhabit the world of the disabled; compassionate people, and those who miss the point of life itself.

I sometimes watch disaster approaching us and hope for someone to show up with what we need to survive whatever is coming. At other times, the problem at hand is one of those little nuisances that drive us all nuts from time to time. They bring us to a halt until they are dealt with.

With two people in wheelchairs in our house (Lisa and her mother), these moments pop up often enough that I could gather statistics on various ways we get to the point from which we can move on.

Although I look constantly for some compassionate soul to come along and lend us a hand, I’m pleasantly surprised each time it happens. When Lisa is in her manual wheelchair, any door we reach that isn’t motorized qualifies as an obstacle for her to get past, (for me to open while pushing her chair.

More often than not, the nearest conscious person leaps at the opportunity to help us, and God Bless them all. It’s such a tiny thing, but these frequent moments reaffirm my faith in humanity as a whole. The more complicated the situation, the more surprised I am by these Samaritans.

While I was helping Lisa learn to drive, we were once on the interstate, passing a slower vehicle. I calmly mentioned to Lisa that at this point in the process we are in their blind spot of the driver we were passing. Lisa reacted by stabbing the brake and swerving in such a manner as to run over the lane stripes on both sides of our car. Cars in every lane backed off and gave us room in case Lisa did something else unpredictable.