Living Will VS Will To Live
It is every person’s right to control his or her own body including the right to choose medical care, medications and the right to determine how one will be treated if one is incapable of voicing an opinion. Of course most people do not want to go on living as helpless victims of medical control after they lose the capacity to make decisions. This prospect fills us with dread and can be an unconscionable invasion of privacy. The “Living Will” appeared on the scene to calm that fear.
However, the primary danger of living wills lies in the fact that it is usually signed long before the person knows when he or she will be incapacitated or what the circumstances will be. Some people feel they would not want to live having to use a wheel chair or with a brain injury or loss of any of their five senses ect. But, technology has progressed by enormous bounds to assist with any disability. At the time of signing the “Living Will” most people aren’t even aware of how many ways technology can help them live more fully, therefore, not fully aware of their potential to a life of quality. “Living Wills’ attempt to predict the future so they are by nature broad and generalized.
Why is it important to be specific?
You might be treated by someone who thinks you cannot be saved when you could. There is great danger that a vague description of what you do not want could be misunderstood or distorted so as to deny you treatment that you do want. There are those in the medical profession as well as the courts, not to mention the HMO’s, that are so committed to the quality of life ethic that some may think patients with severe disabilities would prefer not to receive either life-saving measures or nutrition and hydration.
What are the options?
There are a couple actually. One is a Durable Power of Attorney for Health Care. This is a document you can delegate to a trusted friend or a relative to become your agent for any health care decisions you are unable to make including medications as well as treatment procedures. It is much more specific than a Living Will and has areas where you can put in writing what you DO want.
Another is Missouri’s “Will to Live” document. This document starts from the principle that the presumption should be for life. However, it does provide a space for “Special Conditions” selected by you where you can state when to cease treatment and how. It will guarantee that you will receive the food and water you need should you become incapacitated, while allowing you to decide and state what you might consider “extraordinary care”. Food and water are not medical treatment or machines but basic care necessities even if given by tubes, intravenously or other means.
Medications should be given to alleviate pain not to shorten life.
Is it the law?
Don’t assume the “Living Will” or “Health Care Directive” or “Will to Live” documents are required by law and must be on file with a doctor or hospital before any procedure. While it is a good idea to do so, it is certainly not required by law. This misconception probably comes from the Patients Self-Determination Act, a bill that was passed in Congress in 1991. It says that facilities receiving federal Medicaid or Medicare funds (and that means almost all hospitals) must give adult patients, at the time of admission, written information on the “advance directives” that are legally available. In practice this federal requirement can make people think they must have an “advance directive”. They may even feel pressured to sign a “living will” or “durable power of attorney” general form that could have the effect of stopping medical care and treatment – even medical care and treatment that could save their lives! Be ahead of the game and fill out your form of choice with the specific things you want or don’t want before the need arises.
- Be sure you understand the terms used in your health directive document. A Disability Advocate at SCIL will be happy to help you read through it and explain areas where you are confused.
- Make sure that your agent making those life and death decisions for you knows your intentions behind every choice. Introduce him or her to the advances of technology for people with disabilities so that they have a clear picture of what quality of life is possible. It is important that they have a broader knowledge of potential than the medical field generally exhibits.
- Educate your doctor if possible to the endless possibilities available for all disabilities.
It’s the Holiday season! This is dedicated to those organized early Christmas shoppers (gotta love them) and their quest to find the perfect gift. The big stress, besides money, is selecting that perfect gift for someone who seems to have everything. These are great ideas for those seniors or disabilities in your family. This year why not pick something useful as well as unusual? Assistive Technology offers an endless array of items to make life easier, especially for the person with a disability or senior on your list. You would be amazed at the effect a few adaptive aids have on a person’s personal freedom.
- Walking canes – folding & designer
- Key turner
- Zipper pull
- Button hook
- Sock/stocking aid
- Extra long shoe horn
- Portable book holder
- Jar openers
- Easy grip rocker knife
- Hand held shower sprayer
- Portable tub grab bar
- Bath seat
- Pill organizer
- Pill timer
- Easy grip garden tools
- Voice activated phones and tablets
- Universal TV remote with large buttons
- Multifunction heating/cooling pad
- Hand writing aids
- Card holder/card shuffler
- Lap desk
- Lumbar cushion
- Talking watch or large number watch
- Cordless TV amplifier
- One handed can opener
It’s the Christmas season. So many people feel stressed or overwhelmed. It’s not really meant to be. It’s a time of family, love, traditions and friends. Even if you don’t have much,and there has been times when I didn’t, what it’s about is free. A time to stop and remember Jesus and what he taught us. I don’t hear people saying they hate birthdays because of the celebration. I personally love that it makes us stop and hug each other and appreciate the spiritual gifts in us all.
Life has a way of molding and reinventing us as trauma, crisis and drama infuse our lives. But, underneath, at the core, is who we are. It’s that short timeline from birth through school age. The beginning of our journey is when we form our preferences; learn faith, battle our fears and it is where hope reigns eternal. Those lessons are so important to our adult selves that we never, ever, loose that knowledge. When we were little and innocent there were usually supporting players also but as years progress many pass on or move on. But the little self who was touched by them remains.
For me, in 1989, during an extraordinary dark night of the Soul that little girl was who was left after a coma had peeled away those layers of my pretend self that I clung too and that created my personality. From food poisoning to an auto-immune disease called Guillain-Barré Syndrome I fought for my life for six months. When the worse was finally over it was that little girl alone, in that broken body, who rode a wheelchair out of the hospital to a personal world that had completely changed while she slept in a coma. All those layers for the last 42 years stripped away like driftwood in a sand storm of struggle to survive the last six months. No preferences remained. I didn’t know what TV shows I liked, what perfume I loved, what type of clothes I wanted to wear or what food I liked. Nothing left but the little girl. Who was I? Who would I become? But, that little girl still knew some things and slowly I began to piece myself back together. I remembered the love of animals and how they healed me when my son brought home a tiny orphan black and white kitten on my third day home who he named KIWI. I remembered my Mother’s constant advice to an impossible solution as “where there’s a will, there’s a way” rang in my ears with every painful exercise I accomplished.
I was confused and I was angry and that frustration was my motivator. I refused to be the victim. I began observing people in my environment like the mentally abusive relationship I was in and began eliminating those I no longer trusted. My children began coming home from temporary placement with family making the love of a tight-knit family the most powerful surge of determination of all. Even my 13-year-old daughter who had been diagnosed the first month of my coma with non-Hodgkin lymphoma and in remission on her way home from Arizona where she was with her father for treatment. The energizing feel of music, the desire to teach my children to be survivors, and the thrill of learning something new all infused me with eagerness to set new goals. My Mother had always been my rock but her own illness trapped her in another state. Nevertheless her words sang to me every day of this crisis, “God doesn’t give you more than you can handle”. All of this is my little girl, the real me, the one who no one can destroy. What I lost were only layers formed in the moments of day to day living.
But, there was so much to repair, so much to endure and even though I had made it home it didn’t feel like I was in control of my own life most days. I could not comprehend the “system” with all its rules and jargon and limiting criteria. I fought being dependent on anything or anyone usually costing me precious time and help. I struggled and I cried and wondered what would become of me.
I don’t remember exactly what I was doing or where I was when that great defining moment came. Somehow, by some grace, I discovered hope. It radiated out of me like a lighthouse beacon shining on a life path I couldn’t see before. It was the most significant turning point in my life. It was the day I went from fear to optimism. Hopefulness was my vaccination against despair. This is not to say I still didn’t get irritated or want to send some social worker to Dutch Harbor, Alaska where the only job available to them would be as a crab fisherman in the Bering Sea — in January — but I never returned to despair. Yes, I still had to rebuild who I was, we were still homeless living in an RV, I didn’t know if I would ever work again and $550.00 in social security a month for myself and three children was ridiculous but if this was all I had to work with so be it.
From hopes and dreams to rock solid goals I was on my way and there was no turning back now. I soon taught myself to eat, dress and brush my teeth. Then, I ventured outside with crutches and walked each day a little bit further. In a few months I drug myself up into my old four-wheel drive Dodge pick-up and drove around the field until I felt confident, sort of, to take it on the road. I had the RV moved to Biloxi, Mississippi to be near my biological mother incase I got worse and needed supports. I took a campground right next to a junior college where I could walk and go to class. I had no idea what to take but knew I couldn’t physically handle restaurant management or convention bookings anymore. I had worked a variety of jobs during the years but did not have a career to speak of. After my divorce ten years earlier I just sort of dove into the employment field and took whatever came my way to survive. But, now it was more important as it would need to be something solid enough to replace the awful “system” financially and medically and flexible enough to allow me a chance to prove myself at forty-two with a disability. I now had extensive nerve damage, balance problems, almost no walking or standing endurance and severe hand contractures. Of course the college advisors, and a hundred people since, said just stay on disability but that is not what I wanted for myself.
I began to think about what I still had to offer and something my mother had told me came back in a flash of inspiration. She said to me when I was a teenager and I was at similar crossroads with career options that people have gifts and they have talents. Gifts are something you come into the world with to be shared with others and talents are something you learn and hone and it provides the way for you to give your gifts here on earth. “Be careful, she said, to always give your gifts away and charge for your talents for if you reverse them nothing good will come of it.” You are born with gifts I thought but what were mine? I went back to my little self. I loved to learn new things and I loved to play teacher, I loved animals and I had a discerning eye for truth. The talents were things I learned by living and working. These were my transferable things. I was great at multi-tasking, I was organized, I was good at clerical, I was a good problem solver, and it was easy for me to empower someone else. So, I decided to try taking some classes in the counseling field to see if I could use my gifts through that kind of career. The school ended up being a rip off and closed its doors leaving me with no credits for the semester I struggled to attend and a student loan I never received any money from but now still owed. But, hope never left me and day by day I was becoming more confident learning new ways of doing everyday things with this body. Little did I know within a year a whole new life would begin for me and the children.
I felt strong enough physically now to attempt the drive to Springfield, Missouri where most of my family had relocated. We rented a modest house and settled in. It wasn’t long before I knew it was time for me to look for employment. I felt I owed it to myself and my children to see what I could do to provide more than a bare essential life. I was scared and apprehensive but that hope kept nudging me along. The employment office didn’t know what to do with me except encourage me to continue to live on social security. I asked for a list of job openings based on what I felt was my transferable skills and hit the streets on my own. One of those job openings was at an Independent Living Center. I had no idea what that was but full-time, 8 to 5, Monday through Friday sounded good to me. What they did there, I found out, was empower people with disabilities to see their potential, help them navigate the systems, find housing, technology that allowed maximum independence and a hundred other things that opened doors wide so no option was over looked. The Director saw that potential in me and offered me the job I’ve held for over twenty-two years. All my frustrating experiences clawing my way back to life have helped me help others. I think of that often and remember when I used to say, “Why did this happen to me?”
It would be great to end this story with only successes like all my children went to college and have wonderful careers and nothing bad ever happened again. Of course that’s not life. Several of them had struggles with substance abuse, bad relationships and crisis. One daughter lost a 2-year-old son to an accidental drowning. My oldest daughter died from prescription drug abuse fighting the fear of cancer she was diagnosed with after she was already in remission. She was 39 years old. Both my parents passed on. My 14-year-old granddaughter is waging a war on leukemia. Romance has never knocked on my door again.
But, this is the journey. It’s full of contrast. My grateful cup flows over with gratitude for having the opportunity to enjoy my grandchildren, love my adult children and all those moments of throwing my head back in laughter. And, the priceless opportunity to reach my hand out to so many people with disabilities and their families, opening doors of knowledge and information honed by the school of experience. The best of all would have to be seeing that expression of confidence in their faces when they conceive their true potential. The birth of “hope” is a beautiful thing. It has become my greatest “gift” that by grace has also become my “talent”.
The mind is its own place, and in itself can make Heaven of Hell or a Hell of Heaven –Milton
I was reading a novel today and in the storyline they were mentioning how this young woman was frustrated because she was trying to be the” supermom”. I hardly ever hear that terminology anymore. In fact the last time that I was familiar with it was back when I was a young woman in the 1960s and 1970s when the feminist movement was singing their song and fighting their fight on every venue possible. I started to think how we have evolved so quickly as a culture which relationships are becoming more like partnerships and the” supermom” status has just become the normal life of a young woman’s motherhood and wife. I guess the good thing that has come out of this is all of the new advances in technology as well as home appliances and tools that do things quicker and easier. Vehicles that accommodate the children, pleasure driving and efficient on gas. It was very difficult to accomplish everything 30 years ago but it makes me feel the struggle was worth it because it obviously paved the way to new innovative inventions that at least opens up the opportunities for young women now. They do not have to choose career or home life but can blend them in ways I could only dream of when my family was young.
For a while we lived in a different world than most of our friends and family. We were happy but most people doubted that. We were homeless but we were survivors. We looked at crisis as an opportunity to see what you are really made of. It was an odd existence that most misunderstood like the classmates from my daughter’s school that called them “gypsy girls” echoing the adults disapproval. The reality is that our situation could have happened to anyone that lives paycheck to paycheck struggling to stay above water then one illness, one lay off, one expensive repair and you find yourself in a whole other world.
We preserved by learning how to get by. If we didn’t have the resources to buy something we would do what we called “wing it” and that applied to everything, our poverty line existence, the almost name brand shoes, our thrift store clothes, our underwear dripping dry in the dog size bathroom, our wobble legged dining booth that converted into a bed at night and the electric heater dangling from the ceiling testament to our pioneer spirit, our baby sized sink, bare light bulb dolls kitchen, the bottom line basics-—everything rigged, second-hand, cut-off and recycled. Two single threads held the family tapestry together, love and hope.
Clothes, shoes and make-up were folded, stacked and contained so precisely that the Marine’s would have been impressed, of course they would have been impressed just by the fact that six of us lived comfortably in a 20 year old 17 foot travel trailer, for five years. My Mother taught me that what ever you do in life, do it the best you can. We shined, polished and scrubbed that old trailer until it squeaked. The pride in our hearts always outshone the reality. It was very little in the way of a home but there were many people worse off than we were and we learned from them as they passed through our lives at the campground.
There was a young couple from Georgia who came to the Gulfport area with two babies to work the oil rigs. Hurricane Bob had blown through four days after they arrived. No housing was available because what was left livable after the storm was quickly snatched up by insurance men and contractors. They spent their housing money on a large tent and a month’s worth of site rental. The rest of their savings went for a camp stove, pots and pans, diapers and a week’s worth of food. The husband picked up small storm clean up jobs but it only sustained them from week to week. They never had enough to put in their small coffee can for gas money home. They were desperate, ready to sell everything including their car for bus tickets back home. It reminded me of the helpless animals that get a limb caught in a trap and would chew it off for the privilege of freedom. Eventually they did sell everything, the car being the last to go right before we took them to the bus station.
Then there was the sweet elderly couple from Iowa who bought a brand new trailer so they could spend their retirement traveling and visiting the grandchildren. It took him five tries to back into the site pad with any semblance of being straight. He was grinning when he stepped out of the van saying “see Mama? I told you this would be easy.” She would give him a gesture that looked like she was swatting a fly and throw her head back and laugh. Every morning she would step out of the trailer looking like she just came from the beauty parlor and he would come from the shower house smelling like Listerine and Old Spice. She would invite the kids to play Rummy and he would try to snag them for a checker game. Everyone loved them. It was clear they were in love and had been for longer than most of us were old. They were planning on leaving on the weekend to start their retirement adventure, as they called it, by visiting some of their children in Texas. That Saturday morning the sweet silver haired farmer was knocking violently on our trailer door. As I opened it, his shaking hands were trying to calm his quivering lips as he said, “She’s dead, must have died in her sleep, I don’t know what to do.” I thought to myself as I hugged him, forty years of hard work, one week of retirement. The daughter that came and picked him up was the same one that called a month later to inform us that he had died of a heart attack. “I don’t understand”, my youngest daughter said, “what attacked his heart?” “Sorrow”, I said.
Rita and Billy were monthly campers like us; actually yearly campers would be more exact. Rita was a divorced Jewish woman from Columbus, Ohio and Billy was a beer drinking, bar fighting Cajun that used to make a living on the Louisiana oil rigs before his back was injured in a scuba diving accident. Rita had been married to a Pharmacists in Iowa for over twenty years and was used to the “good” life, golf clubs, social benefits, influential friends. She fell in love with Billy while visiting a friend in New Orleans. As Rita’s story goes, they were at a nightclub when a drunk starting harassing them, Billy walked over and punched the drunk out. Rita said she had never been fought over before and right then and there she felt lust for the first time in her life. He was so different from her first husband, so wild and unstable but he was passionate. Billy was like a drug that she took in increasing doses until she couldn’t live without the feeling she had when she was with him. So despite the horror of her friends and family she married him in a small fishing camp in St. Charles, Louisiana. Now five years later she still praises his attributes even though she has never seen him sober. She handled his settlement money from the oil rig accident like an accountant, saving every penny she could and taking his mental abuse when he wanted a few hundred to go on a binge with his friends. She would happily go about her day preparing delicious food and cleaning the trailer and paying the bills. She made sure she was dressed perfectly for those one or two hours he was not sleeping off a thirty pack . He was good to her when he was awake but he did not exist in a real world, only a co-dependent one. They both loved it. They had no regrets.
I learned a lot from Rita. I started to see myself in so many of her actions. Although my husband didn’t drink, the co-dependent relationship was still there. I too, had traded my independence in a moment of passion. I too, walked softly, waiting for a few moments of attention. Our lives were so different but so alike. She was my awakening, my yearning to want more for my children and myself.
There was also a couple that came down every winter for three months during the cold Michigan winter. Vern and Helen were both retired from twenty-year jobs. He had been a contractor and she a phone operator. Vern was still husky built even though he was in his seventies and Helen was energetic, always walking the half mile around the campground every morning. We had looked forward to them driving in around October every year for the past three years. This year there was something different. Vern had a hole from a Trac in his throat. He said he had cancer of the larynx and the doctor removed his voice box. He said he was trying to learn how to speak with a voice synthesizer, as he would press the long metal tube against his throat. The voice sounded just like what it came from, a synthesizer. It took awhile to understand what he was saying but soon the kids and I could understand just about everything he said. He wore red suspenders that he would snap in order to make the kids jump. He was a teaser and loved playing jokes on them. The kids loved him and so did I. His wife was the caretaker but encouraged him to be independent as much as possible. Sometimes he would get so frustrated he would throw the long metal tube to the ground, shake his head and go back in the trailer. We all knew this was a difficult adjustment so we teased him back when he was in a stronger mood and pretended we didn’t even see the hole in his throat or the synthesizer. But the reality was we did and it was a very good lesson for us all.
There was the couple that came in every Friday night in an old brown pick up with a home made camper on the back, tires bald as eggs and the driver side front fender was tied on with wire that allowed it to flap in time with the rod knocking under the hood. The man was much younger than the woman. He had dark dirty hair and his face was always unshaven, he usually wore a faded black T-shirt with the sleeves cut off and a design on the front that said Hank Williams Tour 1985, a baseball cap with a rebel flag embroidered on the front. The woman had on bib overalls with one strap missing and a cotton blouse underneath. She was thin with long hair and from behind looked to be a lot younger than her face. They stayed to themselves. They were weathered people, wind burned and weary from heading straight into life’s storms. After they parked they would make a fire and start drinking until they fell asleep on blankets on the ground. I never saw them eat anything other than tuna with saltines and cheap pork and beans straight out of the can. By Monday morning they would be gone just to return the next Friday night. They had long forgotten how to set their sails into the wind. They didn’t realize they were captains of their own ships. So, like so many people we saw there, life happened to them, they did not happen to life.
There were so many more lives that weaved in and out of our lives during those years. And, believe it or not, our life got way worse before it got better. But, through it all we never lost our sense of humor, our compassion for others or our family loyalty. Eventually we clawed our way back up and never returned to living in a RV again. We not only returned to our previous life but surpassed it by leaps and bounds.
We will never forget how easily and quickly it is to lose it all. We will also never forget that together we can survive anything. When my grandchildren ask their mothers about what their childhood was like they respond “It was great, we were Gypsy Girls!
We are the wing of the crow that left never to return
Time calls and we fly swiftly pushing ebony feathers along blue sky
No stop to rest, no time to question fate as our souls do yearn
Harsh and strong they glide for they know the secret why
We are the wing of the crow our spirits free once more
Years of life pass by and still we travel far and wide
The wings of night searching for our destiny evermore
Longing not for what we’ve lost but seeking what we hide
We are the wing of the crow sleek and stealth and cold
Focused only on the distant sirens song our souls must find
A melody so mysterious it taunts us on, it’s message so very old
No eyes can see it sing for it lives inside the mind
We are the wing of the crow that left never to return
We are simple in our message though some would say we roam
But forever we will seek it, forever within us it will burn
It’s not the distance but the joy that will surely take you home.