CHOOSING CARE-GIVERS

Heidi and I had no experience in how to safely choose caregivers. We knew as ALS took more of  her body, that she would require 24 hour care. So we approached this like everything else, research and word of mouth.

Most if not all of your 24 hour per day expenses will be out of pocket. If  you cannot afford the costs, care-giving responsibilities fall on the spouse, children and adult parents. I wrote about the perils of having parents move in to help with care-giving responsibilities. Weigh this option carefully.

People asked why don't you use medicare/medicaid provided care. We tried this, there is not really that much coverage extended and the people provided are not trained to address the critical care needs of a quadriplegic. The one time we did do this, the person dropped Heidi and they had to call the fire department to safely pick-up Heidi's limp body. Heidi loved it, she was surrounded by 4 young well built men who all supported and carried Heidi to bed. Heidi smiled for days after this.

If your lucky and have PPO insurance, they will cover about 2800 hours per year with a licensed care provider. We were blessed, to have blue cross PPO at first which provided  wonderful, caring RN/LVN's that all had critical care experience. Caring for a person with ALS does have a learning curve, but they all caught on quick to Heidi's particular needs. The most important aspect of being able to afford a licensed care provider is that all nurses are screened, insured and bonded.

The next option is hiring care-givers who have life experience's as their base, but are not medically trained. So  you go through multiple interviews, letters of recommendations etc. but in most instances you are unable to call the references as they had passed away. Once chosen, your really rolling the dice on mental stability, honesty and integrity.



Thank you for reading.

SEPTEMBER 13, 2014 28 YEARS

Heidi, it would have been 28 years with you today. I repeat what I say every year, I am a better man because of you. Your smile, I see it through your vale as though it was yesterday. I remember your soft voice, your contagious laughter, the touch of your left hand. How when I billowed the blankets you giggled like a young girl with a smile that only I saw.

We miss you, Chris, Ashton and I want closure.  The police are still pursuing your passing as a homicide, how could this happen to you.  I really cannot express what I feel, as there are no words that can fully convey my sadness, my fear that you saw what was happening, were you alone?  You once wrote what it felt like when one of our loving caregivers knocked a hose off and could not figure out what to do. You vividly wrote about the progression  your body felt as it was starved of air. Here are your thoughts as written a few years ago

(Written by Heidi in 2009)

Death by vent malfunction

I could hear the air whooshing from my hose.  A small trickle of air was coming into my lungs which I struggled to take in.  

The constant scream of the vent alarm heightened my awareness.  

I could feel my body detaching.  Tingling, cloudy and praying that I don’t die 

I was turning shades of blue and purple, why wasn’t she using the Ambu Bag?
I thought about how awful she would feel if I died 

I pleaded that it would not be this way.

I blacked out, I don’t know for how long.

I woke to a horrible headache, nausea and a strong desire to soil myself. I didn’t.

My skin was clammy and cold, wet from sweat.

I was breathing and I didn’t hear the leak anymore. She obviously found the leak.

I am now left with an incredible weakness but feeling better.

Thank you lord for not bringing me home this day.

Was this what you felt 3/25/13, this haunts me every day and wish I could have protected you.

My sincere hope is that if your life was taken, the people responsible read your thoughts and feel what you must have been thinking. They know they  will be found and punished. Did your vent hose pop off itself? In either case, I believe that your faith in Jesus carried you swiftly home with little fear

If you have followed my therapeutic ramblings this past year, thank you for reading. The blog has morphed from inspirational posts (from Heidi) to my emotional rants. But life, as it always does threw some major curve-balls at my children and I. Opening up our lives does help cope with Heidi's passing being investigated as a homicide.  It does not seem real, from that night meeting Heidi 29 years ago at Joes Cafe to now

HEIDI BRINGING COMFORT

Heidi, as we come up on our 28th wedding anniversary I marvel at your wisdom, I am looking at some of the notes you had sent me and came across this. I am having a difficult time holding on right now, but in reading this I am comforted with renewed faith that I am blessed to be alive this Sunday look forward to what tomorrow will bring. We will be with you again some day.

(Heidi downloaded devotionals everyday, she sent this devotional to me 9/13/12 - the story is long, but take the time to read it)
Dear Lord, thank You for being there in my darkest time. I know You are real and You are the only one who can bring comfort to seemingly impossible situations. Please help me speak Your truth to those around me. In Jesus' Name, Amen.

"The right word at the right time is like golden apples in silver jewelry." Proverbs 25:11

I love Jesus. I love God. I love His Truth. I love people.
But I don't love packaged Christian answers. Those that tie everything up in a nice neat bow. And make life a little too tidy.
Because there just isn't anything tidy about some things that happen in our broken world. The shooting that recently happened in Aurora, Colorado, is awful and sad and so incredibly evil.
And God help me if I think I'm going to make things better by thinking up a clever Christian saying to add to all the dialogue. God certainly doesn't need people like me — with limited perspectives, limited understanding, and limited depth — trying to make sense of things that don't make sense.
Is there a place for God's truth in all this? Absolutely. But we must, must, must let God direct us. In His time. In His way. In His love.

And when things are awful we should just say, "This is awful." When things don't make sense, we can't shy away from just saying, "This doesn't make sense." Because there is a difference between a wrong word at the wrong time, and a right word at the right time.
When my sister died a horribly tragic death, it was because a doctor prescribed some medication that no child should ever be given. And it set off a chain of events that eventually found my family standing over a pink rose draped casket.
Weeping.
Hurting.
Needing time to wrestle with grief and anger and loss.
And it infuriated my raw soul when people tried to sweep up the shattered pieces of our life by saying things like, "Well, God just needed another angel in heaven." It took the shards of my grief and twisted them even more deeply into my already broken heart.
I understand why they said things like this. Because they wanted to say something. To make it better. Their compassion compelled them to come close.
And I wanted them there. And then I didn't.
Everything was a contradiction. I could be crying hysterically one minute and laughing the next. And then feel so awful for daring to laugh that I wanted to cuss. And then sing a praise song. I wanted to shake my fist at God and then read His Scriptures for hours.
There's just nothing tidy about all that.
You want to know the best thing someone said to me in the middle of my grief?
I was standing in the midst of all the tears falling down on black dresses and black suits on that grey funeral day. My heels were sinking into the grass. I was staring down at an ant pile. The ants were running like mad around a footprint that had squashed their home.

I was wondering if I stood in that pile and let them sting me a million times if maybe that pain would distract me from my soul pain. At least I knew how to soothe physical pain.
Suddenly, this little pigtailed girl skipped by me and exclaimed, "I hate ants."
And that was hands-down the best thing anyone said that day.
Because she just entered in right where I was. Noticed where I was focused in that moment and just said something basic. Normal. Obvious.
Yes, there is a place for a solid Christian answer. Absolutely.
But there's also a place to just weep with no answers at all.

God help us to know the difference.

Paul McCartney Ice Bucket Challenge

Heidi wanted to raise awareness and help find a cure to ALS. Please help reach Paul McCartney in her memory

https://www.crowdrise.com/goodtimes/fundraiser/morganjones2

Healing when does it begin

Heidi, 8 years ago when you were diagnosed with ALS, our lives stopped.We no longer thought about our future together, you wanted to make a difference, inspire people with your actions, to let the world know about ALS so that a cure could be found. You led be example with your love and devotion to your lord, jesus Christ. Me on the other hand got so caught up in making sure you would be comfortable during our final years together, I lost the perspective of living and appreciating each day.

It has been over one year, five months  since you left this world for a better place. The investigation is still in process, the police are convinced someone took your life. The people who were with you your final hours accused me of somehow facilitating your death. 

Time heals all wounds, this is something I have heard repeatedly my entire life. At what point does this healing process begin? It began for me when Jesus entered my life during the easter service. I was tired of living with the anger and hatred for what had happened to our family shortly after you had passed. Ashton and I were baptized together, I believe this was the beginning of our next days together,  you being our angel in heaven, we taking small steps each day towards forgiveness and appreciating each day for allowing air to enter our lungs until we are together again. 

I see you, this picture of our wedding day feels so surreal, as though it is happening now. We miss you terribly but I find myself thinking about this day, our days together as husband and wife. Although there are many days filled with tears, they are tears of joy that you picked me as your man and we lived and honored our vows for 26.5 years.  

THE NEXT 16 HOURS

Heidi, I am sorry, this entry will be a little long.

This is a continuation of our blog titled the first 8 hours There was a statement made by an officer who blocked my entry into our room the day you left us for a better place. He stated the room was a crime scene and he could not allow me to enter.

At that time, what he said did not register, as I had no idea someone's hatred could be so far-reaching as to submit a formal complaint to the police that I somehow facilitated your death.

Many of my posts have referred to things that did not happen as you had wanted, such as your Advanced Directive wishes. You had wanted to donate your organs to science, I am sorry I could not make this happen.

The following will chronicle the next 16 hours of our lives without you Heidi.

When the coroner took your body away  and as your friends left, the  home fell silent with just Chris and my Dad here. Your mother was no-where to be seen. We were in shock, all I remember was falling asleep on your side of the bed and waking around 3 a.m. to our son sobbing. I went into his room and we laid together until he fell asleep.

We woke early the next day, your mom was in the back-yard. Dad went out to console her by trying to give her a hug, she pushed him away, came into the house and started gathering up things in her room.

It was about that time that a police officer knocked on our door ~ 8 a.m. and asked that if I had to leave the  house quickly, did I have cloths, documents etc. that I could gather up to take with me? I looked at him in amazement wondering why he would be asking such a question.

The same officer came to our door again around 8:30 with the deputy coroner asking if they could take your respirator,  they wanted to see if it had somehow malfunctioned. They said if it did, I could sue the manufacturer. I let them take it, but made it clear I had no intention of suing anyone.

Your mother walked out of the house with an arm-full of documents wrapped in a towel at his time.

I remember getting on my computer to start looking up our friends and families contact numbers, to let them know that you had died.

A forceful knock on the door jolted me back to reality, when I answered, there were a large number of uniformed officers and detectives telling me they were locking down our home, as it was a crime scene and they had to preserve evidence. They let themselves in, they told me we had to leave now. I sat down in shock at  my desk looking at my phone, as if I knew who to call at this moment. My father started getting short of breath and dizzy. The lead detective was concerned for his well-being so  an ambulance was called. Dad refused care,  I noticed one of the larger detectives sitting over with dad, speaking softly to him. I thought that he was trying to console my dad with words of kindness and compassion, instead I heard the detective spewing words like act your age, you are making things worse for everyone. I told this man to get away from my father and how dare he speak to anyone like that. He did not seem to appreciate my speaking directly to him like this, so he got up and threatened to arrest me for impeding his investigation.

Heidi, you would have been proud of me, I  remained calm throughout this ordeal. Perhaps that is why the lead detective treated me honorably, they were just doing there jobs.

 I had to wake Chris up. The police blocked my way as I tried to go down the hallway  I politely asked if I could be the one waking my son, I was escorted down the hallway and I woke Chris. They almost did not let him get dressed. Luckily I was already dressed, as they would not let me back into our room.

As I walked out our front door, I asked why. All I was told was that your mom had filed a complaint that I had facilitated your death.

I was told that I could not stay in our home, but asked to stay near as a search warrant was going to be served and our vehicles would be part of the search.

The search warrant was served around 4:30 that afternoon, I had to watch our lives get cut wide open with strangers searching our home. I watched as  they took all of our computers, paperwork, our guns and even the modem from my computer. After they  ransacked our cars I was permitted to leave. It was over by 9:00. I came back home to find a complete mess, things carelessly broken, paper work thrown about in our bedroom.  Through it all Heidi, they did not search your mom's room, as it remained in perfect condition.

Early on, everyone involved with your care, friends, doctors, caregivers were  interviewed by the Sheriffs office, I was interviewed in May,  they offered to interview me right after the warrant was served, but by then I was too exhausted to talk to them..

I am no closer to knowing what your mother accused me of, they still have all our things. It has been hard without you Heidi, we all ache from the pain. We have been unable to move on with this cloud over our heads. The investigation continues, but it has gone in a different direction away from me.

I have sadness in my heart knowing that your mother lives daily with a hatred so strong that she has abandoned her grand children . They both are confused as to why? What you tried so hard to preserve (Ashton and Chris's ) relationship with their grandmother was lost in an instant. Chris wants so badly to hug her and has stated that he hopes he can hug her one more time before she dies.  Ashton only wants to find out the truth behind what happened to her mama. It is public knowledge that  your death certificate documents that you died within minutes of your vent being tampered with.

Happy Mothers Day

Heidi, today was always your special day, we miss your smile, hugs and warmth that only mama can give

Happy Mothers. Every day you are my wife, the mother of our children is another day I am blessed. Every day you are my wife, I think about the word forever that is engraved on the ring you gave me.

For every day I thank the lord I can wake-up and say good morning to you

Other, there is no other person who compares to you

Realize who I have as a wife and mother and realize how lucky we are to have you

Easy it is to love you by the way you are

Vivacious in your approach to life

Enjoy your smile and laughter, when you laugh it makes me well up inside

Reason our children are the way they are. We are so good together, but you are the rock

M stands for Matriarch. The one who leads the family 

O stands for Omnipresent; whose influence in her family is everywhere   

T stands for Teacher; The one who by example teaches love, compassion and knowledge 

H stands for Home, A mothers touch makes it more than a roof over our head. It’s home 

E stands for Effulgence; A brightness; radiance or splendor that you bring to our lives 

R stands for Rock; The foundation that our family builds on. Our stable influence

That’s what mother’s day means to me.

Love your hubby.

The Rock 3-25-14

Heidi, it is a beautiful day, the kids and I went to the rock, the first of many area's your memory will be with us forever. I asked Christine to give me a story which brought a smile to her face

"H-bomb" she called you this when you were young, how on family outings to the ranch, you were so much younger than your cousins, so to get attention you would do things like sprinkle pepper on ice cream, jump into the middle of a card game, blowing the cards throughout the room

 Doug so enjoyed talking about how they tied  you up to a tree one year and just watched you squirm

Ashtons "smile" memory was going to a Hawaiian shirt party when she was young and laughing about what geeks we were dancing

My memory is your telling me what  good cook you were, the first time you cooked me eggs, they were really runny, I never let you live that down.

Rest in peace my wife, you are now in the first place you wanted your ashes "The Rock"

If you knew Heidi and have memories of her that make you smile, please comment on blog.

  

March 25, 2014

Heidi, It has been over a year since we last saw your smile and felt the warmth only a mother can provide. We miss you terribly and wish we could hear your sexy synthesized computer voice telling us you love us just one more time