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Thursday, October 7, 2010

A Saddened Heart


Sandra & Jerry, from The Dance Within
It is with sadness and hope, hurt and joy, that I remember Sandra Bray Wilson.  It is always an impossibly difficult time to say goodbye to anyone in your life.  I know, as a Christian, that Sandra is with God, my own father, and our angels.  She is finally whole again and she has no more pain.

We will miss Sandra terribly and our hearts and prayers go out to Jerry, her loving, caretaker and husband, through these difficult times as well as all that knew her and loved her.  Jerry and family and friends,  I hope to stay in touch, we are here for you. 

God bless Jerry and Sandra...

With Love,

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Monday, September 20, 2010

I Thought I Was Prepared

Eagle Scout medal, Robbins Type 5Image via Wikipedia
The first time I drove him somewhere was the last. I had done it before, hand transferring him from a wheel chair to the car, when we left Casa Colina and headed to the VA Hospital in Long Beach. This time though, I dropped him. I instantly started to feel like a real piece of dirt, “I’m dropping my father; there is nothing I can do,” straight into a series of embarrassing frustrated thoughts of now what!

I had driven to Roselle’s home to see my dad and last minute we decided, well I talked him into letting me try, to go off together in my truck. This was not just any truck, but a speaker on wheels and I’ll never forget the first time my dad got in that car with me way before he was transformed.

My dad bought the truck in 1997, I had already graduated high school and I was attending Saddleback College, still loving my Land Cruiser, a 1977 FJ40, which was a present from my parents for obtaining my Eagle Scout. I loved the yota, but in ’98 my photography business was booming and I was driving all over the place, so I started to work something out with my dad.

Then In 1998 somewhere in that year, my dad started riding a street bike, a real piece of work. It was a Kawasaki 1000, an old cop bike. It was a trip to ride, I took it out a couple of times when no one was paying attention, and the cars would instantly slow down or pull over as Icame up on them because even though I didn’t have the cool stuff like a shot gun, flashing lights or anything else that distinguishes a cop bike from a civilians, it still looked pretty close, and no one was willing to take a chance. At any rate, my dad let me have the Nissan truck for all my travles.

It didn’t take me long to go to work on the truck, dropping it on Beltech racing suspension, lead shot the tail gate, rims, and the 18 speakers in the cab! I was pushing over 10,000 wats 2 12” Cerwin Vega’s and vega’s all around in 6 ½”, 4’s and tweets, all pointing in optimum direction for maximum sound. The first test run cracked the back window followed by cracking the front. There was over 200 pounds of dynomatt in the car and it boomed! Got a ticket one time from a 1 mile approach, the cop said he heard me and it took me what seemed like forever to get to him. He told me he never heard anything like it – well he hadn’t met my buddy with his VW bug and his 32” vega!!

After the car was Deano-fied, I showed it off to my dad, blinging the chrome in the wheels, the shinny Toyota front end I put on and the ultimate sound. My dad was like a kid in again. We took it up and over to cook’s corner and I had no clue you could drive a truck that fast! Each turn he went faster and faster and I raised the volume louder and louder, of course to rock and roll, none of that rap crap (my favorite in the sound machine). I would never have thought this would be the last time he would drive with me in a car, at least as my father I grew up with.

I’ll never forget his face and the excitement he had when he drove that truck. I was proud of myself that I made something that he loved. It was common enough in my life, me impressing my dad with my abilities and talents, but I never grew tired of it. I loved being with him, hanging out, talking, doing guy stuff, whatever, he was always my dad, but we were truly best buds – always.

Now, I was picking him up a little more than a year after that joy ride and it was different. I told him I would like to go for a drive with him and I knew I could transfer him into the truck, my concern was getting him out because that was a down to up move which took more strength and leverage, but I was confident.  I had preapred for this by working with individuals at Casa Colina for his first transfer I did and mentally going voer the moves I would do in transfering him.  More than anything I just wanted to go cruise with him again. So I talked him into letting me get him in the truck and going out. He obliged. He was also much lighter at this time. Early on in his transformation he was still thin and I could move him into position, there was no way later on that I was going to be able to do this with him.
Getting him in to leave and then out of the truck to our destination was fine, so I was thinking this was a simple idea and we headed into the Snake Pit for the meeting, followed by some coffee with some of the guys. After the meeting we walked over to the flee-market, just browsing, we both loved the window shopping experience, as long as it was guy stuff we were staring at. After a bit of a lunch we walked back to the car and that’s when it happened. My transfer of him back into the car was a disaster. I’m not sure what went wrong, but I dropped him. Now I have a 180 pound anchor at my feet and it’s my dad and I’m near to tears because I’ve dropped my dad.

I muscled him with as much determination as I could back up into the seat, apologizing the whole way through. It took me at least 4 tries, picking him up, losing my strength, losing my grip, and dropping him back down. My dad being himself the encouraging loving father he always was to me just kept telling me how good I was doing and that I could get him up into the seat. I did, but to this day it’s a memory I feel bad about and can vividly re-create. I can still see me barely holding on to him slipping to the ground into a pretzel shape of a ball, lying there, unable to do anything. It solidified the condition my father was in and maybe that was what hurt worse.

We cruised for a bit and then headed back to Roselle’s. After getting him out of the truck, back into his regular chair, the electric one, we sat and chatted and agreed that was the last of the Nissan rides.

That however was not the last of our mini adventures we would take together. He and I went everywhere, sometimes with my kid brother, but mostly just me and him. We went to the movies, to art shows, car shows, The Getty, baseball games, you name it, and he wanted to go. As I got older, married and had my daughter the outings became less and less. I certainly fault no one that was just life and what was requested of me and my time to get through and my father never complained.

We used Access from there on. Access has its fantastic attributes, but it certainly has a lot of gaps in all of its wonder. Being a government program, funding is an issue, so you sacrifice some, but you sure get some pretty great deals out of it. We will leave that for another time…

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Monday, August 30, 2010

Just A Simple Call Out

I wanted to simply say thank you to all the hero's out there that dedicate their lives to helping those that are unable.  Of course in the public eye this is the military, police, fire, and medical doctors, those men and women that serve domestically and foriegn - their service is all to often undervalued.  However, I want to thank an even lesser known group...

While the men and women of the military, fire, police and medical are spoken of in general often and specificaly infrequently, there is never a breaking news story of the woman or man dedicating thier life, serving someone living as a quad, para or other non-able bodied state.

I want to thank those men and women that provide a better life for their loved ones, and say to them, here's to you, unsung HEROS!

Your job of caregiver is selfless and often on top of another workplace demand.  It is truly amazing what you do every day for the loved one(s) in your life.  I know that what you go through is a chalenge everday, battling the feelings of not doing enough, being pulled into too many directions, feeling lost, but you pull through every day and wake to give your love again.

For those of you that I have recently connected wtih, thanks to the grace of God, I wish you well this week and hope you find some recahrge over this possibly longer holiday (at least from your regular 9-5).  You are loved, keep your stregnth!
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Wednesday, August 25, 2010

I Was So Angry He Became a Quad

Whirlpool Rapids Bridge, Niagara Falls (#199)Image by Christopher Chan via Flickr
I was so angry that he became a quad. I have never really got over that, even though I have done my best. The incident that caused my father to become a quad was something I put on my shoulders and even to this day it is tough not to imagine a different outcome had I not provided the means for his transformation. If I am not careful I still become angry when reliving the cause of those 10 years.

After the initial hurt and shock, the pain came flowing. Distressful thoughts of how my father was going to live overtook me most days, but that pain quickly turned to anger, some days raging and others a dull ache letting me know it was still there resting, waiting to surface. Depression all the while wandered its way throughout the various phases, hitting me hard when it found me.

That initial call, the rush to the hospital, sitting by his side, remains still like a dream. Shock had its grips on me and I kept thinking this wasn’t my life, this is what happens to other people you see on the news, not us, not my dad, not me. Then right in front of my eyes, like watching a caterpillar inch its way out of a his cocoon, my father began his transformation; wriggling, agonizing, and breaking right in front of me. First it was his feet, then it was his legs, then it was his abdomen, then it was his arms, then it was his lungs and that was it, he would later wake up as a quad, attached to a breathing machine and all sorts of electronics keeping him alive almost a month later.

The shock was rough; it took almost a month of going to ICU at Mission Hospital before that initial shock left, turning quickly into hurt. It was scary every day I was at the hospital.  I didn’t know what was going to become of my father, our family, or my future. All of this was intensified by the fact that my father was asleep, kept in a coma by the hospital in hopes he would heal as his spinal column was not fractured, but rather bruised. He had received direct impact, blunt and hard, to his neck, causing the bruising, which in-turn caused the swelling, hence the slow transformation from my superman to a vegetable.

When he woke and the hurt and the fear came pouring out of us as we watched my father in disbelief, trying to figure out his new body we realized then how many emotions we were all going to have to battle.

I had tried with all my being, night and day to fix him, starting at Casa Colina up to the release from the VA Hospital. In Casa Colina I worked with him on his breathing, his rotations, his walking and finger exercises, time and time again. I carried this habit all the way with us to the VA hospital and up to when he left to live with Roselle. Every day as soon as the PT’s, OT’s, and RT’s finished their work, I would do the same exercise with him over and over again. The toughest was staying the night with him working to get him off the vent machine as those on a trachea tube have much reduced life expectancies.

The only success we had together was the complete break from the ventilator and the removal of the trachea tube. All other wins were minor, but we took them. They would come in waves, some days we would feel things were going to get better, hoping he may actually become an upside down quad, but then the setbacks would hit. This game continued for what seemed to be an eternity. Finally the hospital called it off, he wasn’t gaining any mobility, it was time for him to leave. Enter Roselle and a new stage of anger.

Once situated with Roselle I had the time now to reflect on that work I did at Casa Colina and the VA, the work that did nothing for his improvement. That is when I started noticing my new anger. I was so mad at myself that I couldn’t help him, that I couldn’t fix him and that all I did was for nothing. I had saved lives as a Life Guard, but I could do nothing for my father. The anger overpowered me and I lost sight of what did happen, my father and I grew closer, I grew stronger as a man, and life meant more to me on a daily basis.

And since anger feeds anger, I slowly began to get angry at all the other things that were in my head. He ruined my life, I couldn’t make him happy any more, and we weren’t going to be able to do the father son, father and grandfather things that I had planned my whole life. No way were we going to ride motorcycles together, no more archery, no more father son golf matches, none of it. I was going to be unable to make him happy, he was going to live a depressed life and there was nothing I was going to be able to do to change that.

This anger fueled on and on. I wasn’t a maniac, but I wasn’t necessarily controlled and I tried to live my life as a normal 20 somethiner’ like the best of them, but it all affected me deeply. I began to care less about my health, my looks, which is when I met alcohol, allowing me to feel numb it became a good friend. I did try to keep my faith and maintain going to church. I believed in God, but preferred being numb. It hurt more knowing I did not have a release, sure there was my pastor, but that was it, and I was too ashamed much of the time to speak with him as I was getting in to brutal fights a lot and drinking to mask the rest. There wasn’t anyone I could really communicate with. Even the best of my friends could only listen, not relate. Who was there for me? Who was concerned with what emotions were killing me?

My mother was there, but her personal anger in the situation kept it difficult for her to relate. This was not her fault so I kept my distance. I had my family, but they were all so hurt by my father, their anger was too strong to help me. So, I kept my faith, kept my fellowships with my father constant and God began to work his love. My father began to teach me forgiveness, grace, and gratitude all packaged in love.

After about 5 years of my father being transformed, I began to notice I was not so angry. God’s love was entering me, forgiveness was becoming a way of life and I began to release that which I could not control to God. I was not the one that was going to make my father happy, depressed, sad, angry or left hurting, I never was. I might have provided the source to this life we all lived now, but my father provided the actions. It was now a contract between my father and God. I needed God to be free to do what he had intended all along. My father became saved, in the process he truly sent me to my salvation and I know my father worked His love on many others so they may find their way to salvation.

I am not angry these days. There are days I am sad, confused and hurt, but turning to God helps all of those emotions. Above all that my father had taught me, this lesson on God’s love, His will and my ability to turn it over to Him was his greatest.


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Thursday, August 19, 2010

My Father Handicapped in ways, taught me grace

Sotcher Lake Sky, Sierra Nevada MountainsImage by moonjazz via Flickr
My father, whom by now you know was handicapped, transformed into a quadriplegic, taught me more grace, gratitude, patience and love in those 10 years then he had my entire life. Though restricted to his wheel chair, I felt he was freer than I had seen him. My recent blogging, back and forth with others through Living With a Quadriplegic on Face Book and my constant readings at Friday Study Ministries, especially Pastor Ron's Sermon on 2nd Timothy Chapter 2 or in the news CNN Political Tracker or on Nick Vujicic Life Without Limbs has led me to a series of sleepless nights.

Why had I waited so long to reach out to others? Why had I not looked for help for me much earlier? Why am I just now sharing the love my father brought to so many? And most importantly I have been in deep thought on the amazing love my father taught me through grace and gratitude.

Here is a man that had lost what you would consider as everything and yet, he was genuinely happy. That is not to say there were not days, or times where this peace was tried, there were many of those. The days that tested him were especially tough, but as time went on they became farther apart and shorter in duration. It was through his losses, but richness in life that I learned to live a more free life, less hindered from the little things taken or not given to me.

In 1999, though my father and mother were divorcing, my father had a plush life. As a family we had a boat, 4 cars, motorcycles, traveled, a great home, pets, plentiful food, close extended family proximity, and money enough to not worry. Yet, the life he had lived my growing years, was not as fulfilled as the life he lived as a quad. He was filled with worldly desires and needs.

My father in one of our daily talks told me “there were days, weeks, months and years that I had trouble looking myself in the mirror.” He had made decisions that were worldly, decisions that were not based on love; self love or love of others or love of Christ. He had not been living in gratitude or with the grace of God.

He kept chasing satisfaction and contentment, never reached it though, always looking for the newest material possession to fill that constant need. He surrounded himself with stuff, a trait that I had always loved in myself and has since taken me many years to control. He had valued himself (not in comparison to others) from the things he had. Whether it was all the gadgets, widgets and doodads for archery, backpacking, camping, cars, art, woodworking, darts, you name it, trinkets of greatness made him who he was and I was following that path.

WOW! Not healthy, but look into your lives…how many of you out their own a Montblanc pen, a Coach or Louis Vuitton purse, a Mercedes or Beamer? Why do you have those? I’m not different, I have a Montblanc, I buy Coach for my wife, I have a coach wallet, I just saw the perfect H1 Hummer I want, but why? That is what I am battling with and as I get more into the life my dad was teaching me I am working on diminishing the value these items bring to my life. I have started to give away or sell off most of my “trinkets” and it’s been tough, but I realize it is not what makes me who I am. It is hard to understand who YOU are, self actualizing, if the only way you can do so is if you just had insert item. A life valued on stuff is a life lost. A life valued on love filled with stuff is still a life valued on love. You take the stuff away you still have the love. My dad showed this to me.

At the end of the day, my daughter is not influenced by the car I drive, the pen I have, the purse her mommy has, the designer or non-designer clothes she wears. SHE’S TWO! She has no concept; it’s the worldly afflictions that cause these thoughts in us.

So in 2000 when he woke to nothing, my father was forced to accept or give up. Imagine if you had to value yourself on just being you, not what you are capable of doing, what you look like, what you know, what you have, but rather, just you, the core of you, what God gave to you in birth, your soul. My father was not given an easy transition like I have been afforded; he was on a crash course. He quickly began a life of gratitude, thanking the little things that were so monumental, that in his prior life, would have gone unnoticed.

He valued simple conversation, he was never in a hurry, so he missed very little of life. He had the time to stop and look at the clouds and be grateful he was able to do so. He could stop and speak to a stranger, share the Word of Christ, and just be in God’s love. For those of you that are backpackers, when you are back in the sticks, away from the pavement, you know the slowness I am speaking of. To sit in awe of God’s work then is easy and amazing. This is how my father now lived.

His actions, beliefs and love of Christ taught me how beautifully I could really live if I just lived with grace and gratitude. Think about it, that saying all of you out there who are parents, have said to your children or children have heard from your parents, "do as I say, not as I do." Well now I have a father that is living the life he is telling me to live. He has lost all those trinkets, he has nothing and had begun the process of self love and it was powerful to watch.

He died with nothing and alone. I know his heart was full and his spirit was alive with all he ever needed as he lived in Christ the remaining years of his life. I know he died loving me and my brother, Eric and all the loved ones he had hurt, my mother, her family and his friends. But that does not mean there was not a struggle for him allowing himself God’s love to mend his broken heart, for there were many he hurt.

I watched this battle, this war inside him to not allow himself to become broken from the sorrow. He had made marital decisions that were horrible, hurt his best friend, his brother-in-law, destroyed the love and respect from his In-Laws and broke down a father son relationship with my kid brother. He paid for these decisions the 10 years he spent transformed, helping others, speaking and living God’s word. In the process he became a better man, a warrior for Christ and learned to live a life valued with love hoping that one day those he hurt would forgive him, for his mistakes were not Godly, they were worldly and given the same life to live again, but this time in grace and gratitude, would not have been made.

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Tuesday, August 10, 2010

Who You Serve AND How

BabelfishImage by --Tico-- via Flickr
2 Timothy 1:3 “I thank God, whom I serve with a clear conscience the way my forefathers did, as I constantly remember you in my prayers night and day.”.

This is a powerful verse for me and has become even more so after the teachings of Pastor Ron. When he asked his series of questions I instantly went back to my days with my father from the beginning of his transformation: “Is your conscience clear? Do you love the Lord with all of your heart? If so, what is your motive? Do you want to serve others through the gifts He has given to you? Why do you want to do that? If you had to choose between a need for personal significance, what people think of you, and God’s will for you and others, what would be the REASON for your actions?” (http://fridaystudy.org/html/2timothy/2timothy1.htm)

Why had I been there for my dad? Why was I carrying for him and putting so many things aside? Was I truly acting from a pure spirit and selfless nature or was I doing so for “personal significance?” (Pastor Ron's sermon from above). I had always remembered me as selfless, but maybe not, maybe there was more there that I was not looking into. I started to remember some of the resentment that I went through as well. Maybe I just was not as selfless after all.

Once my father transitioned into a Quad he and I would speak quite frequently about being Christian and what that meant. He had developed a new love and faith in the Lord, one you can read about in his story http://www.fridaystudy.org/html/luke/luke11_1.htm and I had been going to church since I graduated high school. My family did not grow up going to church but we were not atheists either. We grew up camping and being outdoors, appreciating nature, learning appreciation of the world and all its might from parents that believed in the soul and spirit, but not a formal religion. I had and still have a weak sense of the Bible in that I am unable to recite scripture at will. However, I have always felt connected deeply to Christ while in prayer and in my actions through life. So, I had some to contribute to our long talks, but he always taught me more.

As the years went on I felt my care for my father was truly selfless and I was serving through the abilities God had given me. People would comment on my selfless care for my father and were more impressed when they discovered my age. My father would teach me His word and relate our particular lives through that topic of the day. He would reassure me I was following a path filled with the love of the Lord, but in the back of my head, deep down buried as I did not want anyone to find out, I felt doubt. Was I really serving the Lord, or was I trying to run the world? Was I trying to fix my father, keep him safe and happy, all the while proving to everyone what an amazing human being I was? Or was I merely doing the work of a servant, graciously and with all the skills He had given me?

Now as I relive these memories, truthfully, I know a good portion of my actions were for those praises I received. I was so accustomed to being the center of attention, the praise I received all my life for being the best in whatever I did, whether that was sports, racing my RC car, music or school, I was always the top.

Overworking myself all those years made me resentful of my father at times and I regret those emotions. Instead of doing what I could do with the abilities God gave me, I tried to muscle in even more and I know it was for the praise and recognition, not the love I got from Him, serving Him and living His word. I was trying to counteract what was set in motion by Him. I was trying to SAVE my father, instead of letting the Lord do His magic. I was keeping my father in a safe and loving place; at least I felt it was me and my duty alone.

As I know now and after studying my life motives through hose trying years, if I had put more faith in God’s love and less trust in myself, I would have been a better servant and able to provide more for my father. God has a plan, He has a life for us all and no human can change that. It was my desire to change this plan God had chosen that created the resentment and guilt in my heart. I knew I was unsuccessful in my drive, therefore the self doubt and resentment started in on me.

I have since been comforted by my readings of Psalm 75 (NIV – New International Version, http://www.biblegateway.com/passage/?search=Psalm+75&version=NIV):

1 We give thanks to you, O God, we give thanks, for your Name is near; men tell of your wonderful deeds. 2 You say, “I choose the appointed time; it is I who judge uprightly.”



6 No one from the East or the West or from the Desert can exalt a man. 7But it is God who judges: He brings one down, He exalts another.



9 As for me, I will declare this forever; I will sing praise to the God Jacob.

It is futile to dwell on the “what if’s”, you need not read this to learn that lesson. However, as a learned historian, if we do not study our past we will be destined to repeat it. Mostly we learn this on a much larger scale, in government and in Nations, but we must think to apply this process to our own lives. I have put my faith in the Lord and I act accordingly, at least to the best of my humanly controlled ability. My dad would pray for me to do so and that is how I choose to live now. But that does not change the struggles that come at me.

When serving a Quad these challenges are immense and it becomes near impossible at best, much like serving the Lord. The doubt you will poor on your heart, the contemplation you will make before every life decision, will be difficult. How is it fair I am going to do this while they are stuck in bed? Am I doing enough? Did I make the right decision for them? If I leave now, they will be alone the rest of the day, how can I do that? Am I getting enough for him/her today? Have I checked to make sure they are comfortable enough today? The list will continue on and on.

These are impossible questions with difficult answers, but think of hat in which God asks of you every day? Are your actions to show your love of God? Are you acting in His word? Do you love the Lord with all of your heart? Do you love others as you love yourself, no matter what condition the relationship is in? The questions continue and the demand is high, you would go insane knowing the failures you had every day, but God’s love is huge, so you are forgiven every minute and after every failure, after all we are simply human. But imagine if we could all love that same way, you would never feel the sting of guilt and you would act in as much purity as humanly possible in every decision and in every occasion.

In reading from a post Jessica made in our site http://www.facebook.com/?ref=home#!/pages/Living-with-a-Quadriplegic/129886597053877?ref=ts she had written “I do all of his care and I do not work. I get burned out quickly but as of now we wouldn’t have things any other way. Sometimes I am depressed because I feel like I am not doing enough or I can do better. It is a position that is emotionally and physically draining. I love my husband with all that I am…” I am saddened. Here is a woman that is giving all that she has, sure some days might have more in them then others, but her heart is for her husband and she gives the love her all. She continued to make another all too common comment I have heard over the years, commenting on her situation being one that “sometimes [makes] you feel very alone.”

This is what we are here for, love. God has given us the ability to love and wants us to love each other. Here is a woman trying her best with the gifts she has received from Him and yet she is feeling alone at times and defeated. I relate. I have been there and it hurts. While my father was not my husband, I had much pain in the self generated thoughts of being alone or not doing enough for him. While there were supposed places to turn to, there never really seemed to be when I looked.

What I know now, I wish I could have given to myself then, when my father was alive. My father always knew I was doing what I could and never made me feel guilty if I was not with him as much that week. He would always tell me what he loved of me, what my time with him meant and what my actions I did on his behalf would do for him. It was me putting the guilt on and I now believe it is from a personal attribute of acting too many times from a secular benefit, rather from the gifts I have been given from Him, our Lord and Savior.

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Tuesday, August 3, 2010

The Care it Takes

Long Beach, California, United-States.Image via Wikipedia
The Care it Takes to Keep a Quad


Long Beach VA is an acute hospital; my father was not showing any signs of improvement any longer so after 9 months of being in the hospital there off of 7th street in Long Beach, he had to find a place to live.

Not only did he have to find location, he had to find a caregiver that went with the home, or a facility. When you are a quad you have more care then most are capable of doing, not from a lack of love, or want to help, just the simple nature in what you have to do to help a quad is very personal and crosses a lot of boundaries many can’t. Bowl care alone is so very intense and past the realm of everyday personal space, you have to be a special person to perform this two times a day or more every day , seven days a week, four weeks a month, twelve months a year, year after year. Bathing, coming, grooming, cleaning, feeding, it takes a toll on those with even the biggest hearts and loose personal space standards.

So where do you turn when the options are minimal due to finances, insurance and good care? There are a lot of opinions out there, but little heartfelt resources, not unless you have major bucks to spend at minimum $5,000 a month.

Obviously the best options are in home care based, but he did not have a home, not one suitable for his care. My mother and he were in the process of finalizing their divorce months prior to his transformation. Any option for him to move into a home would cost more than there was income, so he had to look elsewhere.

Eventually after speaking with many care facilities he met Roselle. Soon all of us met Roselle, my mother, my brother and I. We all fell in love with her quite quick and she offered a great package for my father. She had a converted home very close to the VA there in Long Beach so my father would be able to maintain his physical therapy and medical treatment.

The home was decent; it had 5 bedrooms for the quads one for Roselle and her husband and one extra. The home was modified in all the ways necessary for the men to get the care they needed and have the freedom they wanted. The doorways were all widened, the shower was roll in and all the other necessary intricacies that come with modifying a home for a bunch of wheelchairs rolling about – ramps up to the doorways, roll over molding at every doorway, corner protectors on all the walls to save them from crumbling after the inevitable contact with wheelchairs.

While my father got his own room, the house was small enough that he could never really have any of his own space. Even though there was a decent back yard, great long driveway in the front of the house, it was never space he could call his and you can imagine as a grown individual what that means in terms of your own sanity. He began to talk about moving out on his own and started to research what options he had.

We spoke about it for months and finally after 3 years living with Roselle, he found what he felt was a good caregiver, behind my back and started the move. The first night he was to sleep in the new place I met his first caregiver and hated him right off the bat, his name was Warren.

Living in a small apartment now, only Warren to fend for my dad, he had half if at best the care he was getting with Roselle. Remember, it is not a pleasant or easy job to be a quad’s caregiver, you really have to have a wonderful heart and Warren did not.

He and I discovered first that Warren was stealing from him, but because of my dad’s ever burning desire to live on his own he would deal with it on a case by case issue, it was never a lot, 20 here, 40 there, but after a few months it all added up.

The biggest issues were not the stealing though, they were what I later found out by a heartfelt call my dad made to me in the middle of the night. Warren would leave my father for hours at a time, luckily at least to my knowledge, never more than half a day, but imagine no abilities to fend for yourself, stuck in a house all alone for a whole day. The thought of it today get’s me to a point of such anger and sadness thinking of my dad like that, stuck in a room staring at a wall, the TV or out the window, alone, hoping someone will come to him, all while I was out playing with my friends, studying for school, living my 20 something life.

My dad phoned me one evening, saying he just wanted to hear my voice. Over the last few years I learned that the phone calls starting out with my dad telling me he just wanted to hear my voice, I knew he was having his down moments. So I would do what I could to get to him as quick as possible. Most of the time it was in only a matter of the drive time to get to him and other’s it took until later that day or next, usually no more than 8 hours.

So this night, I got to him and kept him on the pone until I got there. We talked about just the normal things; he typically wanted to hear what I was doing, rather than dive into his depression. So we talked about the things going on in my life and I drove as fast as I could from my house in Laguna Niguel to Long Beach, the corner of 4th and Elm.

We talked most of the night and just like what had happened so many times before, I stayed with him at his side until he fell asleep. I would do this at Casa Colina, the VA, Roselle’s, and now here. He told me of all the times Warren would leave him, typically every Friday and Saturday night, but any day of the week, my dad was subjected to being left in bed and alone. No one to get him a drink if he was out of water from his camel back left on his chest, help him through a spasm, or just talk with him.  He was just stuck.

Every Friday and Saturday night, Warren would light a cigarette for my dad, put an ash tray under his chin, make sure his water in the camel back was full adjust the lights and the heat/ac (depending on the time of year as Warren was with my father for almost a year) then leave for the night. If anything were to have happened in the building, to the lit cigarette causing a fire, anything, my father would have been left to fend for himself.

It was shortly after we had this talk that we were told the news of Roselle and the quads in her home. There was an electrical fire, no fault of the quads or Roselle; it was faulty construction in the original building of the home that caused the flames. Roselle and her husband were the only two caregivers there that night and were able to get one quad out, but the three other men including Roselle and her husband, lost their lives. She and her husband fought to get the men out but were overtaken by the smoke and then the flames of the fire.

The pain of losing Roselle and the thought of what would have happened had my dad not forced the issue of living on his own, lessened the weight of what was going on with Warren. My dad soon after fired Warren and he and I were told days after he was picked up by the police for warrants out for his arrest.  We were never sure what the warrents were, but it didn't much matter, he was out of our lives now.
My dad stayed in at the apartment there on 4th and Elm and had a series of caregivers over the next year that would take care of him. None of them were ones that I truly appreciated or felt were good to my dad, not because they did not like him, most loved him, he was easy to love, his huge sense of humor, faith in the Lord, and positive attitude, but they were not trained well enough to help him. Some would come in the morning, get him out of bed do his routine, get him in his chair and out the door and then come back at night when he needed to go back to bed. He would be left alone all night until they showed up in the morning again to do the routine all over.

Others did stay and live with him, but were too weird in their own lifestyles to keep around for too long. None would ever steal from him again and all did the best they could for him from their heart and truly did love my dad. I felt somewhat better, but really wished he would move back to a home like what he had with Roselle.

He and I would talk day after day, week after week about this and finally he decided it was time. He was on his own now living in the horrible apartment building off of 4th and Elm for 2 years and he too was getting tired I feel of the miserable help he would get in return for his total freedom – in the most sense of the word you can apply to a quad’s life. That is when he found Nanette.

I loved Nanette right from the start, more so than with Roselle, not because she was better in any way, but because she represented to me piece of mind in my own heart and soul. For two years now I was constantly worried, really worried about my father, not just because he was a quad, but because I was worried about the care he was receiving.

Nanette was great but she did not possess the facility license that Roselle did as that license is expensive, like $30,000 expensive! This is not a license that has shown the quality of the home or the caregivers in the home/facility to be worthy or healthy. It is simply a “DBA” type license or a tax if you will the state has put on these caregivers to get money out of the system. Nanette was however, highly trained and qualified to care for quads. All of her assistants were as well.

The problem this lack of licensing caused was a run from the authority’s type situation. When someone from the licensing department would find that she had not paid the fee’s yet, they would start to investigate, so she would have to move. This kept up for the three years my father was with Nanette.

The care that my father received from Nanette and her assistants was tremendous. She was very caring, very skilled and loved my father. My father just as when he was with Roselle was not just a number, but a family member to these women and their assistants. That is important when you are talking about long term care. There was never a day that went by that my father was not taken care of in the best possible sense of the word.

Unfortunately, it got to a point that it was getting to be too much of a problem to keep moving and avoiding the fee. Nanette reduced her patients to just my father, but that was still no help. So we had to move my father. To buy us some time, as I was told by the VA hospital that my father’s living conditions were going to be reviewed again – that means they would be going after Nanette for housing without the license – I worked with Nanette to get my dad out of there.

We got my dad into a hospital for a mild condition and from there Nanette refused to receive him back into her home. Then I worked on finding him a place to go, consulting many people on the best location, but ultimately we had to make a quick decision. My decision was helped along by a sound word from a woman that works at the hospital in Long Beach (not the VA) that highly recommended Pacific Care Center in Long Beach. She told me her good friends work there and the care is phenomenal.

We made the move. This is a living facility, is state funded and what the state recommends rather than the quality care he was receiving with Nanette. After a short few months it was apparent this was a horrible decision and they had no interest in my father’s health or him as a person. He became just another number very quickly.

Through the course of his stay some major incidents occurred. He was once ignored for over an hour even though he was yelling for help, he was left for ants to eat him, he went un-bathed for days at a time, he received improper bowl care if any at all, he was not properly taken care of with his catheter, and generally not well cared for.

One morning my father called me, he a great deal of pain, pain which I later learned came from being impacted, which is the result of poor bowl care treatment by the staff. He asked me if I could come and see him, these days it was getting more and more that he wanted me near him. By this time my daughter was born, I was working a tremendous amount of hours, so it would go a couple weeks at a time before I was able to see him. I would talk with him all the time, but not be with hm at his side, something we both much prefered.

So I told him I would leave for work early and stop to see him on my way in. I went to hang up but something told me not to. My father, said goodbye and thought he hung up the phone. He was limited on his abilities to manage his phone due to the nature of his injuries, but even more so when he was in pain as that drove up the spasms and spasticity he was experiencing making him terribly tight. So, he laid there yelling for someone to come in and help. The entire ride up to see my father, about an hour, from Rancho Santa Margarita to Torrance, over 60 miles, I heard him begging for help. No one came.

You can imagine the rage I was in when I showed up to the living facility and no one was willing to take on the responsibility of not coming to my father’s aid. They all said they were too busy! WOW! What a shock. I was just forced to remove my father from Nanette’s care, pure and nurturing care because the VA hospital was coming in to investigate and as soon as they discovered the lack of license would have forced my dad into what they considered a licensed facility like Pacific Care Center. After sometime I was able to get him the care he needed that day, but my concerns of the quality of care were highly elevated at that point.

Later on subsequent visits I would discover more and more of the problems that would come up. The poor treatment, the fact they were not rotating him properly, or if they were, they would have found the swarm of ants that had eaten a half inch hole in his left leg and start their work on the right, which also lead tothe conclusion they were not doing his range of motions. Then the fact that he eventually contracted a blood disease from the poor treatment of his bowl care and catheter and was sent to a highly contagious facility which is where he later died, proved that the state cares nothing of patients, just the money from the facilities they are in.
My father died because the mandates of state care. You won’t read this in any news print or media coverage. There was no way to go after anyone, we did not have the funds to start off with, but the impossibility of bringing down such forces is tremendous. The only hope I have for the future is that others will not suffer as my father did. I live with the decisions I helped make with my father which ended his life sooner than expected everyday and it hurts. I am grateful for all the amazing care he received from Roselle and Nanette as well as the other caregivers that gave it their all.  I despise the facility that led to his death and will never forgive myself for not doing more.

Pacific Care should be burned to the ground and their patients removed to a loving facility, one that bathes their patient’s everyday and does not leave urine in all the bathrooms on the floor. The state should allow patients to get the care that they want and from whom they want. If you find yourself in this position, determining how to give the proper care to your loved one, you can’t research the facility enough, and you can’t trust the opinions of others too much.  Most importantly, go with your gut, you will know where there is love and where there isn't.


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Thursday, July 29, 2010

Paralyzed We Communicated With Blinking

g o l d g e s t r y p pImage by Der Ohlsen via Flickr
The First Month

My father spent his first 30 days as a new quadriplegic unconscious and in no pain. Getting to become a quad was quite a different story, very scary, and truly a trauma in itself. It was a slow onset, at first he could not feel his legs, then it was his abdomen, then it was his arms and finally he stopped breathing. This took over 16 hours from the incident to the transformation.

I was at his bedside, trying to console him and he was trying to console me. Still in the midst of such trauma he was trying to be my father and tell me he was okay, this was all okay. I was looking at him, he wasn't fine and I knew, I just knew he would never be fine again. I did all I could to not break down on him right then and there, but I was saved by the emergency bells going off like fireworks all around his bed and the rush of what seemed to be the entire hospital staff running into his room. He wasn't breathing any longer.

It is a site I will not forget, watching him looking at me gasping for air, turning colors right in front of me, scared, frightened, fighting for life. As quickly as they came in they were through, tubes in him, knocking him out with med's and initiating a paralytic medicine so he would not move even in his sleep. There he remained until just after Christmas.

He woke up in Casa Colina, a tremendous facility, but again, scared and confused. He just spent 35 days asleep, paralyzed in a medically induced coma. Now he can't talk and he can't move.

We soon realized collectively, as in the beginning my mom, my father's ex-wife, my brother and I were the only one’s coming to see him, that talking and communicating was a challenge. I pretty much lived their sleeping in a chair next to his bed on the days that my mom was not doing the same, so we developed eye blinking at first, as he was still with tubes through his throat. The ventilator was not in as a trachea tube yet, they were attempting to wait for full recovery if possible before doing that surgery.
So, our option and only option in the beginning was eye blinking. Very frustrating on both parts, but it was all we had. My father blinked, “don't let them kill me,” That was the first thing that he was able to blink to me and I remember it perfectly as if I was playing a movie in my head.

So commonly people tell each other, "If I ever become a vegetable, just let them kill me." This was not too much different with the story of the recent man, Richard Rudd, in the news who is paralyzed blinking to the doctors "Don't Pull Plug". Prior to my father's incident, we were watching the news and the story on Christopher Reeves becoming a quad came on. My dad told me in a very serious tone, quite specifically, if that ever happened to me, push me into the ocean and let me die. I told him I would.

The first thing he told me when he woke, "Don't Kill Me" and he was scared I was going to follow his original wishes. He must have verified with me 10 times that I was not going to let anyone do anything to him and I was going to let him live.

Of course I was going to let him live (live is what he did, long enough to be in my wedding and see his first grandchild, my daughter), I was going to do more than that. I was going to use all the years I had spent dreaming about getting into the medical profession, first as an anesthesiologist, then a paramedic firefighter, to make sure he was taken care of.

While the Medical system is great, you are not going to want to let your family member alone through the treatment process. You need to stay on top of the doctors, the nurses, the orderlies and the administration. All of them are over worked, and you DO NOT want your family member becoming just a number. So I stayed and I researched and communicated with everyone I could to learn from on options, outcomes, probabilities and the future of my father.

I would spend my days to come in the library resources of Casa Colina by the kind hand of a few of the doctors there, learning about the life of a paralyzed individual and what it will be like if he remains a quad. I researched on the computer while I was there, at home or at school, what I would needed to do for him so he might have a life.

Soon they did the surgery to cut in the ventilator directly into his trachea. This was good and bad. It was bad as his lungs would get weaker more quickly, but it was good as he could now mouth words to me. Soon enough he got strong enough to add the capability of the voice control option with the trachea tube, so he could finally speak.

When he finally could speak, he thanked me for not letting them kill him. From there we began our journey.

 
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Wednesday, July 28, 2010

My Father as a quadriplegic

My Father As a Quadriplegic

My dad became a quad in 1999.  It was quite sudden and the onset was slow as a result of trauma to the upper spinal column, C4.  The incident in which he became a quad is one I am not prepared to share for many reasons at this time, but his story changed my life and I would assume I am not alone when I say Living with a Quadriplegic is a life changing event, for all, especially the quad.

I found in the ten years I got to be with my father as he changed into his new life as a quad, that there were very few people, actually no one, that I could rest my pain on.  I was there for my father whenever he needed me, not because I felt I had to, but because I could not think of anything else I would rather do.  This was not just my father, but one of my biggest hero's and biggest fans.  He and I were friends as much as we were father son.

How do you turn to this hero that can't feed himself, or take care of himself and not break down?  Who do you turn to, to even begin to hope will understand you?  What do you do when you are left with a father that is helpless, who once was the strongest, toughest, biggest man you knew, and now you take care of him?  You love him, you live and you laugh.

It took me years to get there and I felt I did it alone.  I'm sure there are thousands of resources, but none that came to my aid, while I was going through this.  I hope that through this page and my face book page, there might start a community of people with resources, support, encouragement, and love to help those currently going through this.

I am not trying to take anything away from the individual that is now or has been the quadriplegic, any one with any type of spinal cord injury, neck, back or head trauma has a special place in my heart.  I don't know how they do it, they have the real strength.  But while you are there for them, who is there for you.  You need to stay strong for them and to do so you need help.

My father later became very active with Friday Study Ministry's the first on line church and was able to begin his process of healing through helping and accepting Jesus Christ.  His story can be found in the Church Pages, but I will weave it here week by week, telling his life and my feelings, hoping to provide encouragement for friends, family, loved ones who are living with a quadriplegic.