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!

A Vow is a Vow, Part Two

Part One here.
Last Summer, Johnny and I decided we would get married in September. He'd said that no one would take better care of him than me. Two and a half years into his illness I had been caring for him day and night. He never wanted me to leave his side.

So we applied for the marriage license and set the date for Sunday, September 9th, 2007. We chose to exchange vows in Ryan and Lisa's back yard among the trees and plants that my son had planted. It was a beautiful setting to confess our love for one another and become husband and wife.

On Thursday, October 4th, we threw Johnny a surprise birthday party. It was his 67th birthday but all his friends managed to keep the surprise a secret. Johnny's eyes welled up with tears as he found the cocktail lounge at our condo was filled with many of his close friends. He celebrated in style that night, spending time talking with each person there.

Then the roller coaster ride of ALS went into overdrive on October 16th of last year when Johnny suffered a serious fall while walking behind me in Holy Cross hospital. We were in their Orthopaedic Center because I had broken my foot. Johnny had an episode of "drop-foot" that caused him to fall dead weight onto the marble floor. He was hospitalized with a broken orbit, a fractured shoulder and wrist.

We spent 32 days in Holy Cross hospital while Johnny recuperated from the fall. I stayed by his side through each of those days and nights. Through natural healing and much physical therapy he was ready to return home on November 16th. As he would become extremely anxious when I had to leave to do errands, I promised again that I would never abandon him. I will always be there for him. He was sent home with a brace for his right leg that would prevent the drop foot from recurring.

We thought we were done with the hospital for a while. We were wrong.

To be Continued... Read more!

A Vow is a Vow, Part One

"In sickness and in health, I vow never to leave your side."

Johnny and I repeated those words to each other on Sunday afternoon, September 9th, 2007. Enjoying the moment with us were Pastor Joel, my son, Ryan, and his wife, Lisa, my daughter, Shannon, and Lisa's parents. It was a simple, yet wondrous wedding known as a Trinity ceremony. John accepted Shannon, Ryan, and myself as his own. We vowed to always be there for each other. It was a day I will never forget.

I have loved every minute of the last eleven years with Johnny. We have had great times and great trials. In February, 2005, Johnny was diagnosed with Amyotrophic Lateral Sclerosis (ALS) - Lou Gehrig's Disease - and that has been the greatest trial of all.

At first hearing the diagnosis, we were in shock. The day after that we cried, and the third day we were asking ourselves why this was happening. Johnny has always been an optimist and, by the third week, he said, "Hell, I'm 64 years old. This could have happened to me in my 30s or 40s. I've lived a good life and I am NOT going to stop living my life to the fullest!"

Over the next several months and years, he signed up for every trial and study in our area for ALS victims. It first attacked his upper body; his shoulder muscles and arms. In the first year and a half after the diagnosis it progressed slowly, but Johnny weakened dramatically in 2007. Since he has been in home care nearly all of this year, he has remained stable.

For Christmas, 2006, we planned a family reunion for Johnny and the Miller family in Hilton Head, SC. There Johnny found out that his family was proposing he move from Fort Lauderdale to Fernandina Beach, Florida into a nursing home. Johnny's response was clear, "No way am I leaving my home!" From then, we began to seriously discuss marriage and our future.

From February to April, 2007, Johnny was part of a hyperbaric oxygen treatment research study in Miami. We found out in June that his deterioration from ALS had accelerated; the experiment did nothing for him. By this time, Johnny was not able to swallow his food, the muscles of his tongue and throat having succumbed to the disease. Johnny dropped from his normal weight of 160 - 170 pounds to 114 pounds, so he ordered a feeding peg in June. He also signed up to receive an LTV900 ventilator, as his breathing had become terribly labored; the muscles around his lungs were losing their strength.

Johnny gained back all of his weight by November of last year thanks to the feeding peg, returning to his pre-ALS weight of 160 - 170 pounds. He was happy that at least one aspect of his ALS had been turned back.

To be concluded in Part 2... Read more!