Did the Lord forget, or just the people?

The Bible says the Lord provides, but maybe the Lord doesn't know Johnny's friends and family. No one has come forth to help with the funeral arrangements for this wonderful man who was an angel in life to them.

The most heart-breaking part of tending to Johnny has been watching as his friends abandoned him one by one. Boastful millionaires suddenly became broke when I asked for help to offset the costs of this catastrophic disease. The family wanted him disconnected from any assistance whatsoever as soon as Johnny had his heart attack. They didn't see any need to give him a chance to recover. They were more interested in the "Miller money" than the fact that Johnny had emphatically ordered his own feeding peg and breathing vent. It was only at that point Johnny finally reached of the machine breathing entirely for him that he gave up his spirit. That was Tuesday, February 24th at 9 am. He remains at the funeral home awaiting a deposit on his cremation.

This is the same man who gave generously to a host of causes as well as his family and friends. I remember watching his growing sadness as fewer and fewer people came to visit him. He is in a better place now. The psalmist says God heals all our diseases and death is God's way of saying "This too shall pass".

We're planning a Memorial on Saturday, March 21st from 2 to 4 pm in the condo's lounge. Aside from the people who have taken care of Johnny and those who work here who have been so gracious, I don't know what some people would be memorializing. If a man gave as lovingly as Johnny gave and I only took advantage of him in the good times and ignored him in his time of need, I would not want to "look back" on his life for fear of seeing my own.

Jesus taught us to never send someone away empty-handed. Perhaps all you have is a kind word, perhaps a resource that is at your disposal, a skill that you have, but I appeal to all those who read this to help in this last tribute to a great man. That he would be remembered in Heaven gives me great peace, but it gives me sadness that the world would forget a man who made my life worth living by giving me the love that my soul desired most. God bless any who can donate or help in any way. [See the sidebar] Read more!

October 4, 1940 - February 24, 2009

We prayed this over Johnny's lifeless body Tuesday morning.

1 The LORD is my shepherd, I shall not be in want.
2 He makes me lie down in green pastures,
he leads me beside quiet waters,

3 he restores my soul.
He guides me in paths of righteousness
for his name's sake.

4 Even though I walk
through the valley of the shadow of death, [a]
I will fear no evil,
for you are with me;
your rod and your staff,
they comfort me.

5 You prepare a table before me
in the presence of my enemies.
You anoint my head with oil;
my cup overflows.

6 Surely goodness and love will follow me
all the days of my life,
and I will dwell in the house of the LORD
forever.

Indeed, his chains are gone (as the video below proclaims). The man who gave me back my life surrendered his Tuesday at 9 AM. I can't believe he's gone, but I believe more than ever in God's amazing grace.

Read more!

Johnny by the pool

Cool weather finally! Read more!

Guardianship!

It's official. I'm now Johnny's guardian. I waited nine months taking care of the man I love day and night, and now I can better give him the care he needs. Georgia Tech is also sending a team here in November to check on Johnny. More on that in my next post. Thank you all for your prayers. Read more!

A Vow is a Vow, Part 4

The note was clear. "Take John Miller off life support now", the relative had written in the email to the hospital. Of course, the relative whom I will not name doesn't have to watch as the man that I love slowly suffocates while dying of starvation. Another moral dilemma is that the feeding peg and ventilator were both ordered and signed for by Johnny.

It's easy to send emails when you don't plan to visit. They haven't. Instead they have sent mean-spirited emails, and more emails, called the hospital where Johnny was staying to ask the staff to update them on his condition. One of the nurses joked once that she was going to start replying, "No, he's not dead yet."

People who have been in the front lines of caring for their severely ill spouse or loved one might be familiar with family members who send edicts from far away rather than lending moral support. Physically, it would be easier to just have watched Johnny die last December. But spiritually, I know I took a vow to care for him, and I know he's cared for me. Spiritually, watching him struggle for air is not an option. It's different when you're next to him in his times of clarity, and your eyes connect with his. If God had another solution, I think He would have revealed it to me by now. But His timing is not our timing.

Johnny stayed at Holy Cross from the time of the heart attack in November to January 25th. The crew at that hospital was quite wonderful, from the nurses to Father Jim Nero and Joanne the Chaplain. Spiritual care is important to Holy Cross, and it was a great help to me. I slept in the room with Johnny for 62 days, and snuck downstairs most mornings for Mass before he woke. Father Jim and Sister Joanne's support was a pillar of strength for me in those days. As were the daily calls from my son Ryan and daughter Shannon who also came several times to see him during that time.

There were tough days at the hospital, too. Shortly after the heart attack, the nurses laid Johnny flat, something you can't do to an ALS patient. Johnny's lungs began to collapse and they responded by giving him too much oxygen, blowing a hole in his lung. On December 6th, 2007, a tracheotomy was put in as the oral tube would soon cause severe damage if left in.

On December 18th, the first letter came from the family demanding Johnny be taken off any life support. It was a difficult Christmas to say the least. A few friends visited, and I put a miniature Christmas tree decorated with angels and beautiful white lights from my sister on the table opposite Johnny so he'd have something to look at. Everyone commented on what a wonderful thing to do for him during the Holidays to keep him involved. We watched and prayed during Midnight Mass on Christmas Eve. He recieved so many, many caring cards from my family and friends BUT not one from his own.

On January 19th, as I was setting up Johnny's new hospital room at home n our condo, a police officer showed up. He explained that a relative of Johnny's had called and complained that I was "endangering" Johnny. There is much, much more to the antagonism of his family toward any thought of him improving, but I don't want to dwell on that.

The officer didn't find any endangerment. Instead, he was surprised to find a fully functional home care center and two nurses who were helping me set it up. And, of course, Johnny wasn't there...yet. Six days later, Johnny was home looking out over the ocean as he has always loved to do.

And here he is still. He has remained the same, neither greatly improving nor greatly weakening. If anything, his hands and legs are a little stronger than before and he is aware of his surroundings and visitors when they come. Nurses come pretty much to do basic tasks and give me a chance to pick up Johnny's medicines and do errands. I am by his side 90% of the time, cleaning his trach, feeding him, and keeping him clean. Exercising his legs , arms and neck I love him so very much. He has been everything to me for many, many years. I can see no other way than to try and do everything I can for him as I have vowed to do. Read more!

A Vow is a Vow, Part Three

Having recovered well from his fall in October, Johnny came home on November 16th. I still had to lift him up when he wanted to stand. His arms wouldn't hold his weight. We even waded into the surf outside our condo. Johnny would do his exercises with an innertube around his waist. He was as determined as always to do his best to reverse or stop the advance of the Lou Gehrig's. John has never been a quitter.

Johnny was weak but very lucid. They say ALS never attacks the brain. On Monday, November 26, 2007, we started off the day normally, wading into the waves in front of our place for our 15 minute splash. One of his nurses, Marlene, paid a visit, and left shortly before noon. Johnny looked to be in great shape considering his disease.

Around noontime, Johnny said he needed to go to the bathroom, so I helped him up. As he reached the bathroom, he complained that he couldn't breathe. I quickly grabbed the oxygen mask and placed it over his mouth and nose, beginning a steady flow of oxygen as he sat down on the commode. It only took eight minutes for the paramedics to arrive. It was then that I was told Johnny was having a heart attack.

Three of his arteries were blocked. Thirty two days in the hospital and just ten days out, and now this. I am proud of how Johnny's spirit has been steady and strong throughout all these trials. Not many people could stand it without cracking up. Johnny was still badly bruised from his fall in October when he leaned forward in his wheelchair to tell our chaplain, "God...is...good!" It took all his energy, but not all his spirit, to say that.

In the ambulance I called my son, Ryan. He immediately made plans to pick his younger sister, Shannon, up and take the next flight out of Tampa. By 9 pm, they were at Holy Cross at my side. What a great pair of kids God has blessed me with! Their support strengthens me during these uncertain times.

Dr. Landaue reported that he'd have to operate on Johnny. My love was in good hands at the new Jim Moran wing at Holy Cross. However, there was a moment of unpleasantness when I called Johnny's brother, and he sounded agitated that I had bothered him. While on my speakerphone, with the doctor waiting for me to give him the go-ahead, my brother-in-law said, "You're his wife now. You make the decisions!"

From that point onward, the response of Johnny's closest relatives has been heart-breaking. Indeed, I made the decision that night, and all of the thousand-and-one decisions since then. It isn't Johnny's fault that he got sick with this dreadful disease; the motto for which it is best known, "a prisoner in your own body", is spot on. Furthermore, Johnny did not die that day in November. He is still alive today; right here next to me. He has been healthier and happier in his own special bed in his own condo, overlooking the beach. For 9 months he has not deteriorated and has gained an extra twelve pounds since his release from the hospital.

As difficult as it is to watch Johnny fight this disease, and the effects of the heart attack, it is even harder to fathom the abandonment that this gentle, loving man has quietly observed. All these months later - September is around the corner - he has never shown an ounce of bitterness. When one of his old friends stops by, no matter how rare that is, his mouth bursts open with that bright Joe DiMaggio smile. Only good will and love registers with Johnny. He loves life itself, and knows the difference between that and merely loving your own life.

To be continued in Part 4 - Christmas, 2007.... Read more!

Zeus oversees Physical Therapy

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Family Visitors

My son, Ryan, his wife, Lisa, and, of course, Zeus and company, drove down this past week from Tampa to spend five days with Johnny and I. Johnny's new wheelchair can go anywhere and has up to 18 hours of battery time for his vent. Read more!

Johnny and the Girls by the Pool

The weather has been great here in Lauderdale by the Sea, and Johnny has been enjoying the sunshine and constant breezes off the ocean. Here Shannon and friends enjoy the pool and visit with Johnny this past weekend. Read more!

Two Thumbs Up on Johnny's Healthcare

Notice to ALL:

Since I brought Johnny home instead of putting him in a Nursing
Home or Vent Hospital or PULLING the plugs (which certain
unmentionables wanted done) in January '08, he's been doing great.

On Tuesday we had a visit from a team of physicians and a neurologist from the Miami VA Hospital along with 2 nurses who visit here frequently. The house was full with medical personnel!

We had a thumbs-up, excellent, yes, excellent, report!

We were told by all that they have never been so impressed by the progress of an ALS patient........... and the care that he receives here at "HOME".

We will be getting a Full written report next week which will be posted to this website. Stay tuned.

HURRAY JOHNNY!!!!!!! I love you!!!!!

God Bless to all who keep him in their prayers; it's working!

Love,

Debbie & Johnny Read more!

Johnny Before the Heart Attack - Photo Gallery

Read more!

Johnny's New Wheelchair - Christmas in July

It's finally here, complete with all the bells and whistles. Read more!