Healing After Hospice: Journey to Bermuda

Words, paintings, and photographs by Sara M. Barton
For Clarie, One of a Kind:

My mother was a unique individual. You never knew what you would hear from her.

Once, her oncologist complimented her outfit, completed by a red beret, and asked her how she was feeling. Her response was, “I FEEL like an old French tart!” Poor Dr. Bob had this image of my mother indelibly etched into his brain forevermore. After that day, she became known as her fictitious alter ego, Filet Mignon, a former Minsky’s showgirl. “Filly” could no longer dance on stage, but being a real show biz trooper, she arrived for her treatments and that show went on. A sense of humor can keep people connected to each other long after the darkness passes.
Hospice is a tough time for any family. You are saying final good-byes to someone you love. The care-giving is no longer directed towards a cure. The effort is to make your loved one as comfortable as possible as death arrives. When it is over, you face the silence where once there was laughter. You see the chair where your loved one once sat. It takes time to adjust to the physical loss. It takes longer to adjust to the heart's loss.

This is the story of my personal journey to heal after caring for my mother. I share it with you in the hopes that it will help you to find your own way after your loss. My mother was a survivor. In the last ten years of her life, she endured multiple operations, a number of debilitating illnesses, and even a heart attack. I was her main caregiver through these years. We spent many hours at the hospital, in physicians’ offices, and going through testing procedures. She wanted to be as independent as possible, and I did my best to assist her in that goal, whether it was grocery shopping or getting together with her circle of friends. When she was diagnosed with lung cancer, it seemed the final insult after years of suffering. The last three years of her life were the most challenging. But as a family, we made the effort to find ways to nurture her spirit, whether it was a paddling trip around the lake or a picnic at the ferry landing, watching the traffic, both animal and human, on the river. Some days, as her strength began to fade, she wasn’t interested in doing anything. I would often cajole her into a trip somewhere, taking into account her limited energy. She would always come home feeling happier, for having been out and about, a part of life again, even if only for a brief moment. 

My mother made me promise her two things. She felt tremendously guilty that her needs were so great. As her illnesses progressed, I spent more and more time taking care of her, making sure she was safe, making sure she was comfortable. “Promise me you will take a cruise.” I didn’t really understand why it was so important to her that I make this promise, but I made it. “Yes, I will take a cruise.” I’m not sure I really had any intention of going anywhere, but it seemed to comfort her that I agreed to do so. “Promise me you will paint again.” As the years passed and the demands on my time increased, I had had little opportunity to pursue my passion for art. “You should show your work.” 

When you are caring for someone in hospice, it is hard to think about the future. Every day brings uncertainty with it. Even as you begin to see the end coming closer, it’s so hard to make plans. Your time is spent worrying about this complication or that infection. You want your loved one to be as comfortable as possible and you want life to be rich and meaningful. You know that life will soon change, but it’s hard to know what that change will bring. The great unknown hovers about you, but it seems to pale in relation to the needs of your loved one. What will the end be like? How will you all get through it?


"Mangrove Tree" -- The Reefs Resort, Southampton, Bermuda

My mother finally passed away, after a few complications. In the end, she died as she had wished, peacefully in her sleep. When she was gone, the house was suddenly so silent. No more machine chugging out oxygen that helped her breathing. No more medicine to dispense. I went from focusing all of my attention on her immediate medical needs to having nothing to do. It felt like one moment I was speeding down the one-way highway at a hundred miles an hour and the next I was stopped, looking at the rotary before me. Which way should I go? After years of having my mother’s physical needs dictate my route, I was suddenly in the position of having to make choices.

That is what catastrophic illness does to families. You pour so much energy and attention into making your loved one feel comfortable and loved. You devote hours to helping another human being live as best as is possible under difficult circumstances. Hospice is really about living, just as much as it is about dying. You want the days, the hours, and finally the minutes to count. And when death comes, as it does in hospice, you are suddenly set adrift. Your life has changed in profound ways. The journey has brought you through some rough waters and seasoned you in ways you could not have predicted. Now comes the new journey, back to the world of the living. No more running back and forth to the hospital. No more emergencies. Now you have to grieve the loss and find your way back to the sunlight. The hours you devoted to your loved one, as he or she moved through the hospice process, are no longer claimed by an illness. It is up to you to choose how to fill them. 

"Fisherman with Drop Line" -- Barr's Bay, Hamilton, Bermuda

A little over a month after my mother passed away, I started thinking about taking a cruise somewhere. I knew I didn’t yet have the emotional capacity to fret about travel details, and I began to understand my mother’s insistence that it should be a cruise. Once I was on that ship, my needs would be tended to, and all I had to do was relax and enjoy the ride. I settled on Bermuda. We had gone there as a family and had many happy memories of our adventures together. I asked my dad if he was interested in coming along. He and my mother had cancelled a trip there because of her heart attack. Throughout our cruise, he often introduced himself and then said, “My wife died in March.” He needed people to know that he was grieving his loss. And inevitably, the people would share their own stories. Some were widowed, some were cancer survivors, some were caregivers. It was comforting to know that we were not alone and that people understood what we were going through, because they, too, knew this journey.

Bermuda is a small country, made up of a series of islands that often interconnect. If you sit on a bench on Front Street in Hamilton for any length of time, you will begin to notice how many people greet each other familiarly. It’s a busy place, with fast-paced traffic and the constant whine of little mopeds scurrying to get somewhere. You strike up a conversation at the bus stop. You chat with the bus driver. You share a laugh with the attendant at the aquarium. Bermuda is teeming with life. It’s in the people. It’s in the sea. It’s in the architecture. This is a place you come when you want to reenter life. If you have spent any considerable time holed up in hospitals or at home, if you have felt tethered to a hospital bed because your loved one was in the process of dying, you’ve missed out on a lot of sunshine. Bermuda is a vibrant land, full of sights and sounds that reflect life. It encourages you to join in. It beckons you to let your soul put aside the shadows and feel alive again.

I did not know when I boarded MS Veendam that I would find myself again during that cruise, or that I would take photographs that ignited the old passion in me again. I came home in the middle of June and started working on my canvases a few days later. I haven’t stopped painting. I hope that wherever you are on your hospice journey, you find some seed of hope that you allow to sprout inside you, and the sunlight and nourishment to let it grow. I hope my paintings encourage you in the dark hours, so you know you are not alone. We’re all with you. Life goes on, but it is changed. Love endures.

“Five Sparrows on a Wall" -- The Reefs, Southampton, Bermuda

One of the first places my father wanted to go to when we arrived in Bermuda was The Reefs in Southhampton. He and my mother had stayed there several times, and he wanted to show me around the lushly landscaped grounds of the hotel. The receptionist graciously encouraged us to explore. We took advantage of the opportunity. The terrace above the water afforded a wonderful view.

Often times, when we are focused on the big picture, we miss the little details that can be so important. When you are grieving, your loss can seem overwhelming at times, and you sometimes have to convince yourself to stay connected to the living world. If you look, you will find the signs. These tiny little sparrows perched on the terrace wall remind us that there is life all around us, and sometimes we have to make an effort to see it.

"Kayaks On the Beach" -- The Reefs, Southampton, Bermuda

My mother loved water, be it ocean, river, lake, or creek. Even after her health deteriorated to the point where she could not walk without assistance or oxygen, my brother would come to the house and pick her up. They would go to the lake and he would paddle her around in his canoe, letting her trail her fingers in the warm water as they glided past the lily pads. Fish would occasionally jump, breaking the surface. She loved those trips because they gave her a chance to forget how difficult life had become. When she was on the lake, she felt free.

I saw these three colorful kayaks on the beach of The Reefs and it reminded me of what my mother held so dear. In this landscape scene, there are no people in view. And yet, we know they are near. Someone will set out in one of these kayaks, perhaps soon, and explore the shore. Even when we cannot see people, we can see signs of human activity all around us. The grieving process is often a lonely one. We each feel what we feel, and we must process it in our own way, coming to terms with knowing our loved one will no longer be there. It’s not easy. It takes time. Sometimes a memory will come over me and I have to stop and think about it. I have to let myself feel it and I have to put it into perspective.

"Pink Umbrellas On the Beach" -- The Reefs, Bermuda

Pink is such a cheerful color. In Bermuda, you find it everywhere – in the clothing, in the architecture, and sometimes it even seems to be in the air. When I looked at the line of pink umbrellas on the beach, I knew instantly I want to someday return. I will find a chair in the sand and park myself in the shade of a pink umbrella. I will bring a paperback, a cold drink, and a piece of fruit, and I will sit by the sea, listen to the gentle waves lapping onto the shore as I read, and I will be at peace. When I am ready to enjoy it, I will return.

It’s hard to make plans while you are in the hospice experience. You never know what will happen next or how it will change life as you know it. It’s hard to think about the future, because if you do think about it, you have to imagine that your loved one will be gone. When hospice is over, and you’ve said goodbye to someone you love, it takes time to be able to make plans. You start with reconnecting to a dream, to a passion, and then you go slowly. You let the idea roll around in your head for a while, to see how it fits. Is it comfortable? Am I willing to make the effort to go after it? Do I want it for me?

I know I will go back to Bermuda at some point in the future. I still have $12 in Bermudian money in my wallet. I could have exchanged it before I left the island, but in keeping it, I made a promise to myself to go back.
“Girl on a Bench”  -- The Reefs Resort, Southampton, Bermuda

The Reefs has this little girl sculpture on a bench, tucked into a corner. She sits proudly reading her book, in a sunlit spot that is framed by the palm tree. My mother was a great reader. She loved good literature. As a child, I would sit next to her and we would read every night before bed. My mother always seemed to have a newspaper or book in her hand. She devoured the New York Times book review and frequently called the public library, asking the librarian to order a new book that seemed interesting.

One of the things I found helpful after hospice ended was to find ways to still feel emotionally connected to my mother. I knew her physical body was gone, and that I would never hear her voice again or see her sitting in her favorite chair, but by finding ways to remain emotionally connected to her, it built a bridge that allowed me to move more comfortably back and forth between the past with her and the future without her. There is still a part of her that remains, even though we go on in her absence. When my father hears a news story or sees something interesting, he thinks about what my mother’s reaction would have been and we talk about it. They were married almost 61 years, and they shared a lot over the years. My sister’s specialty was making my mother laugh. I could always tell when she was calling, because my mother’s laughter would fill the air. The latest tale could be about her son’s antics at school, a colleague’s ridiculous gaffes at work, or her experience coaching her young female ice hockey teams. My mom used to pass these gems along in letters and phone calls to those she held dear. People said she made them feel they were right there with her, sharing the moment. Now when the phone rings and I hear the voice at the other end say, “Clarie would have loved this story,” I know I’m in for a treat, and I pass it on. My mother’s friends miss her, too, and by continuing to share with them, we all stay connected to my mother.

"Beach Visit" -- Horseshoe Bay Beach, Southampton, Bermuda

I fell in love with the action of this scene. There was constant motion, as people came and went in different directions. A young boy was washing the sand off his feet. A couple had a conversation by the wall as she fumbled for her camera bag. A man was finishing his snack as he headed to the parking lot. A couple of women were heading to the beach with their beach chairs and umbrella. This is everyday life. This is just ordinary people coming and going. But there is physical energy here that is palpable. You can almost hear the conversations and feel the grains of sand ricochet against your skin as people walk by. 

When my mother’s health was declining, I spent more and more time indoors, tending to her needs. As her main caregiver, I was responsible for making sure all her medicines were taken, she got her insulin shots and nebulizing treatments, and that her weight was being maintained as well as humanly possible. Towards the end, I had to be prepared to respond to an emergency at any time. Sometimes, the only time I left the house was to go grocery shopping, to walk the dog, to go for a short hike, or to work out at the gym. Even that didn’t always work. More than once, I got a call on my cell phone to come home immediately. Once, while I was a couple of streets away, I found out my mother had fallen, and her elderly friend couldn’t help her up. Another time, I was on the elliptical at the gym and my father called. He didn’t tell me what had happened. He just asked me when I was coming home. My mother had fallen in the bathroom and hit her head on the door. It was a terrifying experience for him, because he imagined what might have happened. He and my brother managed to get the door open and help my mother back to her chair. Although she wasn’t seriously injured, she had a tremendous bruise, and it signaled the beginning of the end. She couldn’t even stand up by herself any more. In hospice, you have to adjust the energy level to fit the needs of your loved one. After hospice, it takes some time to get used to being in the middle of the action again. Sometimes it helps to sit on the sidelines for a bit and watch before you jump back in.

"Discussing The World Cup Championship"    -- Royal Navy Dockyard, Sandys Parish, Bermuda

The British are famous for their red telephone kiosks, and you still find them in use in Bermuda, even in this day and age of cell phones. As they wait outside the occupied booths, these men are engaged in conversation. The night before, there was a major World Cup match, so I imagine that might be the subject they are discussing. I’m sure they all had their own opinions of how well the match was played by their favorite teams.

Bermuda is a place where you strike up conversations everywhere. If you wait for a bus, you usually don’t wait alone. If you are waiting for the ferry, there are others in line ahead or behind you. As the minutes pass, little comments turn into discussions. I met so many people from all over the world as we traveled around the island. One of the deck hands on the ferry from St. Georges to King’s Wharf was a young man who also worked a second job in Bermuda as a paramedic. His uncle was an experienced EMT and drove the ambulance. I learned about how difficult it can be to navigate Bermudian roads when time is critical, but he also had some funny stories about how stubborn some drivers can be in yielding to emergency vehicles. I was rewarded in making a friendly effort at conversation when he proceeded to point out the local sights as we made our way across the beautiful turquoise water. Other passengers joined in and peppered him with questions. If you treat Bermudians with respect, you will find they are friendly, hospitable people, more than willing to share the wonderful secrets of their islands with you.
“Little Island At The Mouth Of The Harbor” -- Bermuda

I took photos during a sightseeing cruise to the HMS Vixen wreck. This little island popped up along the route. The scruffy trees and shrubs seem almost cartoon-ish in form. On one end of the island, a small motorboat was anchored, and a couple was offloading their gear. They had two red chairs waiting in the sand. Were they there to picnic? Were they there to fish? Was this a romantic interlude? I will never know. But it was nice to have the opportunity to wonder about their lives.
When you’re in the midst of caring for someone who is dying, you have to be almost hyper-focused at times. It can be very stressful, because at the close of a life, you are trying hard to tie up loose ends and make all the pieces of a puzzle fit before the sand runs out of the hourglass. I spent as much time as I could toward the end of my mother’s life, asking her what she wanted done and how she wanted it done. I sorted her personal papers under her direction, until she asked me to stop. It became physically and emotionally overwhelming for her to realize she was almost at death’s door. I knew she was afraid of death because she didn’t know how it would come. None of us do. But I promised her I would do everything in my power to make her as comfortable and pain-free as I could, and that’s what I did. There were so many things to complete, like legal documents and medical decisions, so that we could make sure her wishes were respected. We even started planning her funeral with her, but she took a turn for the worse and the opportunity faded. After her death, it took time to get back to the simple things, like wondering about a couple enjoying a moment on a secluded beach.
“Three Ducks at Dry Dock” -- Royal Navy Dockyard, Sandys Parish, Bermuda

The sunlight in Bermuda is everywhere. It plays off the white roofs of buildings. It penetrates the water, providing wonderful hues to the sea and the sand. The colors are so vivid wherever you look. Even the boats in dry dock are handsome. There are no people in this scene, but there are three ducks in a row, paddling through the shallow water, leaving a glistening trail in their wake. The hospice experience can feel a lot like dry dock. You have no ocean to sail upon, because your boat’s hull is out of water. Any repairs that need to be made, in order to insure your next journey is a safe one, are made in dry dock. It helps to take some time after the hospice experience to reassess your life. Where do you go from here? If you are a sailor, you know that you don’t just put your boat in the water and head out to sea. You need to chart your passage. You need to know your equipment is in good working order. You need to be captain of your boat, navigating the seas safely. That takes a good deal of planning and preparing. Where will there be fast currents? Where will there be safe harbor? Where are the dangerous rocks and how can you avoid them? What is the weather forecast? Sometimes after the hospice experience, it’s tempting to rush back into the water without really looking at where you are going. Getting to know the ocean itself is as much a part of the next journey you make as reaching the destination you seek.

“Barr’s Bay Marine Police Station” -- Hamilton, Bermuda

In Bermuda, even the police stations are architecturally interesting. Standing on Front Street, you can see the busy harbor in the distance. So much of the travel around the islands is by boat, and there is constant activity on the waterfront. As I explored the area on foot, I met a fisherman who was using a simple drop line in the water along the wharf. He was very excited that he had managed to catch fish that fetched a good price at the market. Sometimes people forget that Bermudians have a very high cost of living on the island. As tourists, we are tempted to resent the prices we pay for food and lodging. By speaking with the locals, I had a chance to better understand their way of life, and I strayed from the normal tourist route to do it. I didn’t want to be encumbered by my visitor status. I wanted to know the real Bermuda. One of the biggest changes that catastrophic illness can bring to one’s life is to alter the way you look at what is before you. I had an enormous need to feel connected to everything I experienced. I didn’t want to drift through the days in a fog of cloudy emotions. My mother was a person who couldn’t stop meeting people. No matter where we went, she reached out to people. In elevators, she would start conversations with strangers. Even throughout her chemotherapy and radiation treatments, she made an effort to engage in conversation, especially if she thought someone was feeling down. Life can become more precious through the hospice experience. It can shape how you view the world ever after. 
The saddest thing I ever heard was from a family friend in another state. Her mother was dying of lung cancer and didn’t want anyone to know. She shut herself off from everyone but her daughter, a neighbor, and a couple of nurses, and she made her daughter promise not to tell anyone. One day Jane finally reached the breaking point, and she couldn’t take the stress of being so isolated. She reached out to me and I made phone calls, so that she could know there were people who cared.
We should never be ashamed that we are dying. My mother’s biggest pet peeve was when medical personnel asked her if she had been a smoker, and then gave her that little “tsk, tsk”, as if to let her know she brought the situation upon herself. She had quit smoking decades ago. Her aunt had had lung cancer, even though she was never a smoker. Cancer happens to the best of people. Is it environmental or genetic or both? The truth is we don’t really understand how or why it comes to be, but we surely don’t deliberately and willfully bring it upon ourselves. At the end of life, we should not be passing around blame for the cause of an illness, especially when there is nothing that can be done to fix the situation. Hospice patients didn’t choose their fate from a menu of good and bad options. It was cast upon them, and how we help them through that process is what really matters.
"Front Street Chess" -- Hamilton, Bermuda
Every Wednesday night in the summer, Hamilton hosts a street festival called Harbour
Night. There are tents put up in the street to display local crafts, inflatable bouncers
for the children, and street dancing. From the cabin of our cruise ship, I watched the
preparations unfold. After dinner, my father and I wandered down Front Street, enjoying
the camaraderie of the crowd. I found this group of chess players seated in front of a shop. 
Chess is usually such a cerebral game that we tend to think of it as being relegated to
some quiet paneled library or den, as each player laboriously pursues a winning strategy. Street chess is lively. These men want to be in the middle of all the action. The tables had plywood tops, slightly warped, and homemade chessboards. They sat in plastic lawn chairs they carried with them, still marked with red price tags. Reflected in the shop window, the sunset burns brightly, like their passion for the game. It echoes the intensity of their faces as they decide what pieces to play.
My mother loved to play Scrabble. Words were her forte. As she began cancer treatment,
the chemotherapy gave her “chemo brain”, in addition to neuropathy. She was very
frustrated by this. I still challenged her to play, but instead of competing against her,
I encouraged her with suggestions of possible words to play. As the effects of the
chemotherapy wore off, she was eventually able to resume her normal level of Scrabble
play. Sometimes, when she came up with a big score, she tried to pretend it was just
lucky, but I knew how much it meant to her to be able to think clearly again. As she
moved into hospice, Scrabble became too taxing for her. But my brother discovered that
she could hold her own at dominoes. We sometimes sat around, playing a three-way
game, but I often felt that dominoes should be my brother’s special time with my mother.
The two of them would sit and play a couple of games. My brother would employ all
kinds of fancy strategies, and my mother, who just went with the flow, managed to win
the majority of games. Go, Mama!

“Cliffside at The Reefs” -- Southampton, Bermuda

Standing on a cliff gives you the opportunity to see the big picture. When you are gazing upon the world from a height, you can see so much more. The sky is bigger. The sea is wider. People are smaller. If you look closely, you will find the colorful kayaks on the beach. Look again and you will also see a few of those pink umbrellas. Here is the terrace wall, where the little sparrows sit. These individual scenes are parts of the big picture. If we only stand on the cliff and look down, we never feel the silky sand between our toes or taste the sea spray upon our lips. If we never stand on the cliff and let our gaze wander, we never understand how great the world is and how much awaits us. Live in the moment, but climb the cliff once in a while and enjoy the view.

Before she passed away, my mother planted seeds in me that she hoped would grow. My tears nourished them as I mourned her absence. She believed in me, and because she did, it enabled me to find the strength I needed to carry on. It didn’t happen overnight and it didn’t happen easily. The heart so often closes off after loss. It doesn’t want to think about what will come; it aches for what was. My mother would have loved these paintings. The irony is that it took her death to help me find my way to where I belong. She would have been thrilled that I am sharing these paintings with hospice families, because there is now a bond between us. We are connected by the hospice experience. Perhaps somewhere inside you now lies a dormant seed or two. Wisdom comes from what we make of our experiences. Capture the joy of each day and know how lucky you are to appreciate it. When you are frustrated or sad or angry, understand it, but do not be its prisoner. Feel what you feel, but let hope live in your heart, that there will be better days. When you are ready, seek them.

Copyright 2012-2018 Sara M. Barton