Doing Good Works

Insights, Tips, and Other Things That Work For Family Caregivers

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.

c 2011, All Rights Reserved

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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

There exists an illusion that there are two kinds of people in the world, specifically “us” and “them.” Too often the able-bodied and alter-abled polarize themselves in this way, to the detriment of both.

These pieces are adapted from newspaper columns I wrote over several years. They were designed to promote a truce between these two groups, whose only difference is a circumstance that can improve or worsen at any time, taking members of either group into membership in the other.

My wife has been disabled since birth and in a wheelchair since childhood. Her mother was born able-bodied, but developed a progressive disability in her 50’s. She lived with us for the last ten years of her life and died in our family room.

By living able-bodied inside the world of wheelchairs and mobility challenges, I have gained countless insights into realities that each group overlooks in the other. From my vantage point, there clearly is no “them;” we are all “us.”

I know how much the disabled have to teach the able-bodied about taking their blessings for granted, dealing with pain, overcoming hardship, and not putting meaningless details at the top of their priority list while ignoring what really matters.

Most able-bodied people need two seconds at a distance of 30 feet to judge everything they need to know about someone in a wheelchair. “Everything” amounts to a list of things the disabled person cannot do. For their part, the disabled person sees only how long it took the other to size them up. Both groups need to look a little deeper for the gifts and blessings they have to give to and receive from each other, to get past the Us/Them perception.

America has invested half a century in materialism as the vehicle that will take us down the road to someplace that has everything we want. The time to reexamine this perception is at hand, and the insights we need can be found in the minds of those we see only in terms of what they cannot do.

Chapter 1: The Boy Scouts Made Me Do It

I speak to so many who tell me they couldn’t handle all the work that goes with my wife and mother-in-law’s disabilities. I won’t deny that it’s a lot of extra work, but with that comes extra rewards. But reaping the rewards requires holding one’s mind a certain way. Many events when I was growing up shaped the way I deal with challenges.

Some of the best and worst memories of my childhood years revolve around my three unsuccessful attempts to become a Boy Scout. Painful as they were, those experiences predisposed me to doing the right thing when I started assisting my disabled wife and mother-in-law.

I’m ashamed to admit that I flunked my “Tenderfoot” test twice way back then. Knots got me in both cases. The first time, I had trouble making the rope do what I wanted it to do, and then the nervous knots in my gut made a bad situation worse. I puked on the Scoutmaster’s shoes the second time. Third time I signed up, I quit before Tenderfoot Test III. When I left my uniform behind, I took two things with me that I use every day.

The Boy Scout Motto is “Be Prepared.” Like so much wisdom that’s out there these days, it’s simple but not easy. If a loved one in a wheelchair has come into your life to stay, they will need more help than anyone but a boy scout can anticipate, and being prepared will mostly be about flexibility in the face of surprises.

Any new environment causes unexpected and impossible-to-anticipate challenges for people in wheelchairs. If they are new to their disability, it just gets worse. So make like a Boy Scout, and be prepared.

Then there’s the Boy Scout Law, which states that a Scout is (take a deep breath): Trustworthy, Loyal, Helpful, Friendly, Courteous, Kind, Obedient, Cheerful, Thrifty, Brave, Clean and Reverent.

I acknowledge that it’s a lot to ask. But after 16 years of assisting Lisa, her mother, or both of them, those 12 virtues are life preservers that keep me certain that assisting them benefits me.

While dealing with Lisa’s many disabled friends, I have heard or witnessed dozens of examples of prices paid by disabled people or their support network after an incident where lack of these virtues caused a problem.

Anyone who plans to be there for someone in a wheelchair (or any other major disability) needs to be Trustworthy, Loyal and Helpful. Those are the big three upon which all the others rest. It’s hard for an able-bodied person to relate to the impact a betrayal has on someone with a major mobility challenge. Injury, death or other unwelcome consequence can occur any time the help they get is less than everything they need.

At one time or another, we all get depressed, angry or sad. When it happens to the disabled, you will only compound their problems unless you can find the strength to be Friendly, Cheerful, Courteous and Kind. It’s hard but important, for both their peace of mind and yours.

Assistive equipment, medications and other devices can be profoundly expensive. To become Thrifty, learn to make a dollar out of fifteen cents. You'll never know how much money you can save until you dedicate your life to saving it. Learn to underspend on non-essentials.

Obedient. That’s a tough one. Everyone has to draw their own lines, but I weigh Lisa’s depth of need whenever I can’t make peace with the act of doing what I’m told.

Clean? That’s about bathrooms and kitchens, and has to do with clean hands, clean bodies, clean dishes, utensils, clothes, surfaces and food. However much cleaning you're doing, you probably need to do more.

Easing suffering in others is a holy endeavor, an d assisting others while keeping this in mind makes it loving and therefore lofty. Reverence lets us offer assistance from the highest aspect of who we are, and it adds to the rewards we get back when we do.

So if an assistive relationship is in your future or in your face, find your inner Boy Scout and let him do his best to do his duty. He lives for those shining moments, and so does the loved one to whom he gives care.

Chapter 2: Pets can be very therapeutic

Many of the procedures we use as family caregivers involve the simple practice of doing what works. We keep in mind the larger mission of boosting your disabled loved one’s quality of life. The best, cheapest and easiest way to accomplish this is to increase the inventory of love in their world.

A large part of everyone's energy when assisting a disabled loved one is spent trying to make everybody happy. No one denies that it's a big job, but it's one that's worth doing, and for that matter, it is often doable. One idea I'd like to put forward for your serious consideration: Let's talk about getting a pet as a therapeutic companion for the disabled.

I admit that it's not always possible. And sometimes, even though it is possible, a pet is not feasible for practical reasons such as allergies, landlord-dictated restrictions or emotional scars from traumatic childhood experiences.

But assuming you can get past these immovable obstacles, the benefits of giving your disabled loved one a pet to love are many and varied. The well-chosen pet becomes a source as well as recipient of love and affection that enriches the lives of all parties. Pets can create daily rituals within the physical capabilities of loved ones who question their ability to do such simple things.

And the time your loved one spends adoring, grooming, caring for and talking to their pet adds meaning and richness to time that would have passed anyway.

Let me caution you that the key to the success of this plan is selection of a WELL-CHOSEN pet, not just a pet. Like most things we do for our disabled loved ones, the goal is to meet their needs rather than ours. Find a really good answer to the question of just what your loved one wants and needs in a pet.

For example, if they need to be adored in a manner that borders on worship, a dog is probably the best choice. A loving cat can serve the same need, but care must be taken not to select a feline that disdains people, as so many of them do.

Added enjoyment can be found in conversation with a pet. Many cats and dogs enjoy being talked to, and many pets respond vocally when spoken to. Lisa and I have owned several verbose and articulate dogs and cats in our years together.

For people who want their pets to respond in the Queen's English, consider a parrot or cockatoo. If an expressive whistle will serve, opt for a parakeet or cockatiel.

Some people, I suspect, would be happy to make eye contact with a pet that does little beyond eating and returning the eye contact. These folks will be thrilled with a nice fresh-water fish. I have to admit that I find a deep sense of serenity while watching fish watch me back, even though I consider myself a cat person by nature. Sometimes the cat will watch with me.

By the way, you want to be careful mixing cats and fish, as the former tends to eat the latter if given a chance.

Likewise cats and birds, although I once saw a parrot sitting calmly in its swaying, screened cage while a hungry and frustrated cat sat on top of the cage contemplating ways to breach it’s security system and dine. That picture still sits in my mind, offering me all the entertainment value of a Tweety Bird cartoon. Aw, poor puddy tat.