Tag Archives: hospice

12:07

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The final breath came at 12:07am, May 28, 2012.

Brian finished his journey here and has moved on. He was one of the rare ones, filling 38 years with a lot of living. He left me with two perfect gifts, Brian and Jordan. He was loved, admired, respected, and treasured by so many. My hope is that he will be remembered fondly.

I’ve shared with only a select few that Brian never could picture himself growing old. He just could not see it in his mind’s eye. As a couple we had difficulty looking into the future and seeing ourselves together as grandparents, sharing our late years together. Somehow the image eluded us. Brian had a sense that cancer would take his life and just before he went into the hospital I had vivid dreams involving cancer. Premonition? Possibly. Life is mysterious.

I watched the nurses dispose of all the medications that had been keeping Brian comfortable for the past 112 days. I’m relieved that my days will no longer consist of dispensing meds and counting pills and changing patches. I looked on as a nurse carefully cleaned and dressed Brian in linen pants and a favorite tee-shirt, perfect for a walk on the beach at sunset. I carefully placed a necklace around his neck. It has a stone on it that I found on Bonita Beach, one of two. I have the matching necklace. I opened my hand to receive the wedding ring that another nurse delicately pulled off of his finger. Jordan tearfully asked if he could have it. Of course. In my own process I had tucked my wedding ring in its box and placed it in a safe place a few days ago, a step in my grieving and letting go. Family members left one by one, leaving my brother and I, along with Jordan, to watch as Brian’s body was respectfully wrapped and gently placed on a gurney. He made his final exit from home. The three of us looked at each other in the silence and then hugged one another. The suffering is over. Brian found the peace he was looking for.

Now I’m sitting alone for the first time in 112 days. Except, I’m not alone! I am surrounded by people who love me, some of whom have become incredibly precious through this journey. I’m sad that Brian’s life was cut short, but glad that it was a good life. I feel a sense of relief that the man I cared for over these months is now completely free of pain. Life is mysterious. It is precious. It is good. “The days are long, but the years are short.” Go live your life. Deeply inhale. Slowly exhale. Now live.

Life = Joy

A Chance Meeting

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Fate. Destiny. Serendipity. Kismet.

For the past few nights Brian has been like an obstinate child. He’s insisted, argued, pushed, said no, and fought against his body and family. He insisted he had to walk upstairs for a change of clothes. He demanded that he be allowed to ascend the stairs again and take a shower. He pulled himself out of bed and ended up trapped in the bathroom. He tossed and turned and pushed and pulled.

I’ve been sad and angry this week, watching the man I’ve cared for all these months resist my efforts. My voice has had an edge, my face has shown little emotion at times. I’ve been at my wit’s end, ready to get in a car and silently drive away without telling a single soul here that I was leaving.

Everything came to a head last night and I called hospice out of desperation. The kind soul on the other end of the line talked me through the steps I needed to take to get Brian to rest long enough that a nurse could come visit this morning. Then she asked the question: “Would you like a chaplain to come out too?” “Yes, I would.” That’s all I said and something wonderful was set in motion.

When I hear “chaplain” a certain picture forms in my mind, one that has been shattered over these months in Colorado. I feel a special closeness to our hospice chaplain. I have gained much from our quiet talks. Well, it’s the weekend and our chaplain was not available. But when I heard the knock on the door and answered, I was greeted by another kindred spirit.

Hollie and I sat at the kitchen table and talked for two and a half hours. Those hours flew by and we both swore it had only been 30 minutes. What we shared was deeply personal to me and very much what I needed to say and hear. She had been out to lunch with our chaplain a few days prior, and he had related a little bit of the story of the journey of a wife whose husband was 38 and dying of cancer. Yeah, turns out that person is me. I’ve been reading a book about finding the heart of kindness and compassion, touched and challenged by the story of a group of people who set out to live among the homeless, taking on the same burdens in order to learn empathy. Yeah, turns out Hollie was in that group. We were amazed at the similarity of our paths and what we have come to learn…and how much there still is yet to learn in this world. Looking into her eyes, listening to her words, seeing her look back with understanding brought a smile to my face and joy to my soul.

There are some people we come across in life who just get us. They give us knowing smiles. They finish our sentences. They understand our hearts. That’s happened to me more than once lately. The struggle Brian has faced at the thought of departing this world has somehow allowed me to surrender to the gift of staying behind and embarking on a journey. Brian’s process of dying is opening up my process of living. If Brian were not taking his last breaths, I would not have been able to experience some of my recent moments of joy, such as sitting across the table from a new friend, a fellow traveler.

Fate. Destiny. Serendipity. Kismet. = Joy

The Facets of Charity

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I’ve been thinking about charity lately, probably because we have been the recipient of a good dose of it in various forms. On top of that I’m currently reading The Compassionate Life: Walking the Path of Kindness by Mark Ian Barasch and chapter three ends with some lovely thoughts about charity. To me, charity has several facets which make it shine brilliantly.

Charity is definitely about giving to those in need and we have certainly been in need and received much! All those who donated money to us at the Brian D. Lawson Benefit Rally showed incredible generosity and have helped make it possible for me to care for Brian in the way that would not have been possible otherwise. Hope Hospice and Agape Hospice have provided for every medical need without cost to us. I cannot fathom what the cost is for doctors, nurses, a hospital bed, oxygen, medical supplies, and medications required to keep Brian comfortable. Charity of this kind is obviously appreciated and I’ll be saying my thank yous for years to come.

That feeling you get toward someone in need or a person who is suffering in some way is another form of charity. We see the tears in the eyes of those who visit. We hear the shaky voices that attempt to hold back emotion. We read the words of love and encouragement from those we have never met and those we love so dearly. Charity of this kind is not tangible, can’t be put on a shelf or tucked away in a box. However, it is very real and we feel it deeply. It makes it easier to go through each day and it has incredible and lasting value.

I’m not sure if, prior to this experience, I would have thought of charity in this final way: looking at others with understanding and tolerance. I’ve looked at people and situations and rolled my eyes in judgment, wondering why others can’t be more like me. I’ve been critical of other wives, mothers, daughters, and friends. Now I have a much more lenient and patient way of thinking. I still have my opinions, of course, but I’m starting to look at experiences through new lenses. I’m attempting to see new points of view and walk that mile in someone else’s shoes. My favorite book of all time is Harper Lee’s To Kill a Mockingbird and Atticus Finch is a character I love and admire. One of the famous quotes from that beautiful tale rings true: “You never really understand a person until you consider things from his point of view – until you climb into his skin and walk around in it.” That, my friends, is charity, and…

Charity = Joy

Healing Waters

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Our hospice team is like a little band of super heroes and I feel so blessed to know each and every one of them. I’m saying this after experiencing a truly great day, but I feel exactly the same on days we struggle. If you spent a day or two with them you would understand what I feel. They get frustrated along with us at every little setback and they cheer enthusiastically with every little (and big) triumph. Agape means love and that’s what I feel for our super heroes.

The change in Brian today was quite impressive. His demeanor was calm, he laughed hard and smiled big. He even joked around like he used to. I saw his personality return. He’s a little slow and somewhat tired…kinda like he has cancer or something. 😉 For him to be able to describe the way he feels as “perfect” pretty much sums up the improvement from yesterday.

This evening a high school friend of ours stopped by for a visit and Brian was able to talk and reminisce for a couple hours. She commented that she couldn’t believe it’s been 20 years since we’ve seen each other. Time does fly by. Someone once said, “the days are long, but the years are short,” and that is certainly true. Twenty years ago we were all beginning to plan the next big phase of our lives and now here we are having experienced all the ups and downs that come with the human experience.

Another visit we had today was from our chaplain. We talked about many things, but in the course of our discussion I had a lightbulb moment. I stumbled upon the reason I feel so connected to Florida and why it became, and will forever be, home. Over the last three years Brian and I have had some intense struggles and faced some things we almost could not bear. Also during that period we began paddleboarding and not all of our time on the water was spent chasing sharks. There were other times we paddled far out into the Gulf, to the point we could no longer be seen from shore. Out there we saw incredible creatures, of course. We also found peace, tranquility, and solitude. It’s easy to clear your head when you are surrounded by blue water in front of you as far as the eye can see. The “world,” represented by all those on the beach looking as tiny as ants, is far behind you. We would sometimes just lie down on our boards and stare up at the clouds, listening to the sounds of birds and water and occasionally fish or a sea turtle. Serenity. Other times we would talk and argue, occasionally even fight. It was a safe place for those difficult conversations though. No one could hear us and we always seemed to be able to work through our differences and difficulties. One day I told Brian I felt like the sea was healing us. And it was in many ways. We learned important lessons about ourselves and each other. Our perspective was forever changed. It’s hard to feel self-centered when you are standing on a board surrounded by millions of gallons of water and a never-ending sky. It’s humbling. That water has been here much longer than I have, going through its cycle over and over and over. I’m a tiny speck on the shore. One small person. Here for a limited amount of time. But while I’m here I get to choose how I spend my time. I’d prefer to spend my time being grateful for each day and for the people I’m surrounded by. I want to experience the beauty of the world. I want to practice kindness and compassion.

I learned so much of that in the warm water of the Gulf of Mexico, paddling out into the blue, living in my little slice of paradise called Fort Myers. And that is why it will always be my home.

Grateful for Sandy Toes

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Continuous care was truly what we received throughout the night and today. I mentioned previously that some meds were discontinued, others adjusted, and some added. The doc came by today, apologetic that his plan had not worked, but confident that he can determine an effective course of action. You know the good ol’ 80/20 rule? It applies to almost everything and what the team tried last week works on 80% of patients. Brian, however, fell into the 20%. This is not surprising, as Brian likes to stray from the pack and be a bit rebellious! With the changes that were made yesterday, Brian experienced a level of calm he has not felt since before he was diagnosed with cancer. I witnessed a significant change in his behavior: less shaking, decreased restlessness, dramatic change in agitation, the ability to read a book for short periods of time, and less moving from place to place in an attempt to get comfy. The doctor had noticed last Wednesday that Brian was not able to be still for more than 7-10 seconds unless he was touching me or holding my hand. I do have a calming effect on most people [insert laugh track here]. That changed today as well…no, not my uncanny ability to calm; Brian’s ability to keep still.

I just tucked Brian in after he turned on some music, we made sure the house is dark and quiet, and he had a regular dose of Valium (he took his first loading dose earlier) and a “super dose” of Haldol. Super dose is my own term. It’s just a bump up from his regular dose during waking hours. He is slightly nervous about tonight because a continuous care nurse was not available. I reassured him that I know what to do and that while six hours is our goal, it’s going to be okay if we come up short tonight. I even believed myself when I told him that!

A few days ago my good friend, Noelle, whom everyone is familiar with by now, asked me if I would be interested in co-running a web site with her. I didn’t actually finish reading her text (I got as far as “would you be willing…”) before answering with an enthusiastic affirmative, and then I went back and read the text in its entirety to make sure I hadn’t inadvertently gotten myself into an MLM or Ponzi scheme, especially since I’m not entirely sure what a Ponzi scheme even is. Anyway, back to my story. Noelle and I are trying to change the world. Yes, we like to dream big. We plan on making millions. Or at least one million. Oh, no, I don’t mean dollars! I don’t think that would change the world. We plan on helping the world see that there are at least a million gratitudes out there, just waiting to be discovered. In fact, A Million Gratitudes is the name of the site. And, coincidentally, our Facebook page. As of today, we are up to 7 gratitudes! That may not sound like a lot, but have you ever seen an oak tree? And an acorn? Mmm hmm, I think you get the analogy.

Throughout this experience I have learned the following, which I posted to the wall of A Million Gratitudes on Facebook: Smack dab in the middle of a horrible day it is entirely possible to find a small piece of gratitude pushing its way up through the muck. If you step back, you’ll see the contrast between the beauty of gratitude and the drabness of what has been surrounding it. Which one stands out now? Let the gratitude push through and grow!

This is a bit of shameless promotion. However, my disclaimer is that I could sit around and do nothing but pout, or feel sad, or just do nothing. No one would think less of me for doing so, given the rain that spoiled my life’s parade. Instead, I’d rather focus some of my energy on promoting gratitude. Shamelessly. So, if you are grateful for anything, find a way to capture an image of it (even something just symbolic), or some other representation (video, quote, etc.). Our hope is for the vast majority of the gratitudes posted to be original representations, not links or anything else snagged from around the interwebs. If you go for a walk and see a lilac bush, take the time to smell it and then take a photo and share it. Or if you make a colossal mess in the kitchen while baking cookies with your grandkids, by all means document it and share! We only need to collect 999,993 pieces of gratitude to reach a million. Also, please feel free to ‘like’ our Facebook page. Sharing gratitude can happen there. Spread that around instead of nonsensical junk! Converse about the goodness in life on our big, beautiful planet online and elsewhere. Look around in the muck and you’ll see the pieces of gratitude pushing through.

Today I shared Gratitude #7- Sandy Toes
One of my favorite things about Florida is the beach. Those are actually my sort-of-pedicured toes in the picture on A Million Gratitudes, and I know exactly where I was when I took it (Sanibel Island, watching a sunset in 2009 with Brian, our kids, and my parents). Some people hate getting sand on their feet at the beach, but to me that’s what the beach is for. You walk along the sand and pick up little pieces of the world. You feel the earth beneath your feet and look out into the blue water. You stoop over to collect shells that could be from anywhere. You lie down and stare at the clouds, finding pictures in them. You relax and smile and feel grateful for the moment. Then you wipe off your feet and leave refreshed.