Hospice Care: What It Means to Us

"You matter because you are you, and you matter until the end of your life. We will do all that we can not only to help you die peacefully, but also to live until you die." ~Dame Cicily Saunders, Founder of the Modern Hospice Movement

   "The term “hospice” (from the same linguistic root as “hospitality”) can be traced back to medieval times when it referred to a place of shelter and rest for weary or ill travelers on a long journey.  The name was first applied to specialized care for dying patients by physician Dame Cicely Saunders, who began her work with the terminally ill in 1948 and eventually went on to create the first modern hospice—St. Christopher’s Hospice—in a residential suburb of London.
   Saunders introduced the idea of specialized care for the dying to the United States during a 1963 visit with Yale University.  Her lecture, given to medical students, nurses, social workers, and chaplains about the concept of holistic hospice care, included photos of terminally ill cancer patients and their families, showing the dramatic differences before and after the symptom control care.  This lecture launched the modern movement which resulted in the development of hospice care as we know it today." (National Hospice and Palliative Care Organization. http://www.nhpco.org/history-hospice-care; accessed on 09/25/16.)
   "By the 1950s, social trends were changing and most people died in hospitals rather than in their own homes. This change reflected the growing number of treatments available in hospitals. The medical profession increasingly saw death as failure.
Cancer was the most feared diagnosis. Physical pain afflicted at least three quarters of cancer sufferers and appropriate painkillers were rarely used. Morphine was considered addictive and too dangerous."
   In 1967 the very first modern Hospice was opened in Sydenham, London. "Led by Dame Cicely, St Christopher’s set out to discover practical solutions and to disseminate them widely. There were, of course, other hospices before St Christopher’s. These hospices were oases of dedicated nursing care for the terminally ill, but they were not what we now think of as modern palliative care. In contrast, St Christopher’s was committed to education and research, as well as excellence in clinical care.
   This combination of science, care and sharing of experiences identified the opening of St Christopher’s Hospice with the start of the modern hospice movement. A holistic approach, caring for a patient’s physical, spiritual and psychological well being, marked a new beginning, not only for the care of the dying but for the practise of medicine as a whole." (St. Christophers. http://www.stchristophers.org.uk/; accessed online on 09/25/16)
   In 1969 Dr. Elizabeth Kubler-Ross wrote her groundbreaking book On Death and Dying. Based on interviews with 500 dying patients, it is their experiences which Kubler-Ross distilled into the five stages of death and dying: denial, anger, bargaining, depression, acceptance. These are the emotional stages one usually experiences in the loss of a loved one. 
   Les and I experienced shock at this diagnosis, anger about former medical treatment which we feel has brought us to this point, and we jumped right on to acceptance. This was possible because of my previous experiences with death and dying. 
   As a former Hospice volunteer I know from personal experience the one major mistake people make when faced with a life limiting or terminal diagnosis is allowing denial to drive their thoughts and choices. This shuts one off from seeking assistance at a time one needs it most. Too often people wait too long to contact Hospice when it is the first contact a terminally ill patient and their family needs. 
   I have seen Hospice care dramatically improve the quality of life for patients to the point they were able to leave , having gained insight into how to engage in better self-care, and how to actually live and enjoy life in the face of terminal illness.
   But Hospice is not just for the terminally ill; it also exists to help immediate family and care givers, providing support for those who so desperately need it in the face of overwhelming emotions, endless care giving, and consistent feelings of helplessness and sadness. 
   There are generally two types of Hospice care programs: inpatient where the terminally ill person is provided a room in a hospice setting which provides on-site medical care and around-the-clock service; outpatient which brings hospice into the home of the patient, allowing those who choose to do so, to die at home in familiar surroundings. 
   What does all this mean for me and Les?
   It is Les' wish to die at home, on our boat, with me by his side. We shared this with our GP, and she referred us to Rennie Grove Outpatient Hospice. We had a wonderful initial meeting with Nurse Jenny who was at first surprised and then relaxed about our very frank and straightforward approach to death and dying. Now that we are hooked into the local Hospice program, a Hospice nurse visits us at home every other week and we have one phone number to call at any given moment should a need arise--it matters not if it is morning, noon, middle of the night, weekends, bank holidays or Christmas. The 24 hour a day reception service takes our information and a Hospice nurse calls us back within ten to fifteen minutes. They liaise with our GP and the local Visiting Nurses, who come and see us on the weeks in between the Hospice nurse visits.
  What this means for Les is that his pain levels are consistently monitored by the nurses--some of whom can prescribe meds and others who contact our GP or the Hospice Palliative Care Specialist physician to ensure Les has always got the appropriate medications for his situation on hand.

Les feeling good and working on a project!

   It means that when Les felt as though his legs were going to give way in the shower, a call to Ian Rennie and a chat with a nurse resulted in a hospice occupational therapist visiting our boat, measuring our bath and ordering a shower seat which fits our tiny bathroom and our needs like a good glove. 

   It means that when Les' stoma blocked up last week at 3:15 am, leaving him in pain so acute all he could do was cry and moan, I had someone to call. A Hospice nurse came straight away and gave him an injection of Di Morphine to take the edge off his pain. After conferring with her, I called an ambulance which took Les to the local A & E.  

   While I was standing outside the A & E making a phone call, I overheard the conversation of another woman on the phone. Her father-in-law was in the A & E. He has terminal lung cancer. I overheard this woman talking with her sister-in-law: "...yes, yes and the doctor told me they had dad stabilized now and he could go home but this happens every time. He cannot breathe so we bring him in, and they stabilize him with the nebulizer and let him go home where his condition deteriorates and we are right back where we started." I waited for her to hang up and apologized for listening in on her conversation. I told her why we were here at the A & E and then I told her about Rennie Grove Hospice because the medical staff of the hospice could no doubt stabilize her father-in-law at home and save them all much grief and anxiety. I hope she took my advice and called them. This was a perfect example of how and when hospice can step in and make life better for a terminally ill patient and their loved ones.

Les being carried off the boat by paramedics.

   It means that once Les returned home again, the Visiting Nurse came and checked in on us. In recapping the situation for her, she realized that Les did not get the dose of 12 hour timed release Morphine from the evening before this event, because it was trapped in the blockage, and he didn't get the dose I gave him the following morning during the event because he vomited it up. So he went for 24 hours without the consistent amount of analgesic required to allow him to function comfortably. She suggested that rather than upping his dosage after this event, we continue on the same dosage and see how Les did, which was good advice. Once life settled down again, Les functioned superbly on the current pain dosage--as along as his body delivered it. the longer we can keep Les comfortable on lower dosages of Morphine, the better off he is.
   It means that when the Hospice nurse checked in with us the following week, she had been brought up to date by the Visiting Nurse and after thinking about Les' situation, she asked if she could contact our GP and discuss changing Les' pain meds from timed release Morphine capsules to a Morphine patch which would deliver Les' needed pain meds even if his stoma blocked again. 
    It means that since we don't have a car, and I am using crutches on long journeys due to the Osteoarthritis in my right knee, that we have only had to step foot in a pharmacy or a GP surgery only once in two and a half months.
   For me it means I don't feel like the entire weight of Les' care is sitting on my shoulders alone. Given that Les' health can turn on a dime this is very important to me. Any time I have a question or concern, I can contact Ian Rennie Hospice and someone will return my call right away to discuss my concern and help brainstorm a remedy or provide me with and answer which is so comforting since Les' health can change in a heartbeat these days. If I needed time away from caring for Les, the Hospice program would find a volunteer to sit with him while I went out.
   As a former hospice volunteer I have washed dishes, made beds, and fixed a meal for overwhelmed care givers and family who simply did not have one ounce of energy left to lift a finger other than providing care to their dying loved one; I have organized drawers and closets for a weak terminally ill patient so things suited their present circumstances better; as a former hair stylist, I have cut the hair of patients too weak to travel to a salon; I have painted finger and toe nails, helped very weak patients eat, visited weekly with lonely patients who had no family; I have sat with people who were taking their last breath in this life and whose family was too far away to be there at the time so they did not have to die alone.
   I have sat and drunk coffee with bewildered family members while explaining that death is hard work for the dying. It only looks easy for those of us at their bedside. In actuality the dying person who lies quietly not moving or speaking may be re-visiting memories, shuffling through life experiences, settling things in their hearts and minds, and dealing with extremely deep emotions to which we on the outside are not privy.
   Their spirit is also beginning to disconnect from its body and this is very hard work. We are born into this world in these bodies which grow with us and carry us through our lives. We take our bodies for granted until they no longer work as we expect and we too often confuse our bodies with our essential self. This is why quiet and peace is crucial for someone on the very cusp of dying. Every time their room is packed with visitors and people are talking away to them, the dying spirit is called back to its body and the whole process has to begin again. This is one reason why people often choose to die late at night or in the wee hours of the morning when no one else is around.
   For us the involvement early on with Hospice means things like Do Not Resuscitate (DNR) orders and where Les wants to be when he dies have been discussed and agreed upon. In the final analysis Hospice means we have time to focus on living well each day instead of focusing only on death, because these issues have been discussed, addressed, agreed upon and will be dealt with appropriately as they arise.
   So what does living look like with the knowledge death is just around the corner?
   For us it means I am looking ahead only far enough to anticipate what Les might need to feel comfortable in the months to come when he is boat bound and can no longer walk. The dinette will be made into his bed so he can lie somewhere light, airy and sunny. We are looking at getting a couple of those round mirrors used to see approaching traffic in tight spaces. These mirrors mounted at the right angle above the dinette would allow Les to see the passing parade of boats and people. The dinette area will allow Les to see visitors and watch telly. 
   It means I don't think too far ahead otherwise I fall into what is called Anticipated Grief--which anyone who has experienced can tell you it feels like a shock to the heart while being fitted with lead boots. Anticipated Grief is the overwhelming knowledge that someone we love is dying and one day very soon they will be gone-forever. It is very easy to get caught in AG and feel so overwhelmed that one cannot function and then it steals away precious seconds and moments we still have left with our loved one. It takes a lot of energy to stave off Anticipated Grief. And no this is not denial...it is the recognition I will have the rest of my life to grieve Les once he is dead; I will not allow myself to get lost in grief now while he is still here by my side.
   It means we take every opportunity to laugh. 
   We recently finished watching a series on New York City--what makes it so great, how it functions, etc. etc. etc.  One of the programs covered NYC's massive garbage program--the largest of any city on earth. The next morning we sat discussing it over breakfast. Les said,
   "The U.S. is such a big place, you've got the room for rubbish. It could all be dumped in a giant canyon somewhere for years and then sealed over with topsoil once the canyon was full."
   "Well," I replied, "I have always thought it would be a good idea to simply dump all the garbage in an active volcano--instant incineration."
   "Yeah but how could you get close enough to a live volcano to do that? I don't think that's possible."
   "Why not? There are ancient cultures who got close enough to active volcanoes to sacrifice virgins in order to ensure a good crop. If they could get close enough to throw someone in then I think disposing of our garbage via volcano is possible." At this point Les got the most amazing look on his face--half wistfulness and half regret.
   "What a terrible waste of a virgin." 
I laughed so hard my sides ached and Les had tears in his eyes as he took on a broad New York accent and called out, "RED HOT VIRGINS!! Get your red hot virgins here!!"
   On another occasion we were discussing one late evening, my upcoming appointment with the surgeon in Warwick for my right knee operation. One of my concerns about going through with surgery soon is how we will get coal off the roof. Les is no longer capable of hoiking bags of coal down and I certainly won't be doing that for about three months post-op. We discussed several scenarios and toddled off to bed...
from where I was woken out of a sound sleep at 4:30 am by Les sitting straight up in bed--still asleep--and yelling, "Get down off the roof Jaq!! Now before you fall!"
   With my heart banging in my ears I cried out, " For Gawdsake Les I'm not ON the roof--I am lying here in bed right next to you!"Les opened his eyes, looked at me and we both burst out laughing; it was so obvious Les' dream was fueled by our bedtime conversation the night before.
   It means that while we have always been in sync with another from the first week we spent together back in 2010 at Cloudhouse in Pullman, Washington, we are so deeply in sync now that we are literally reading each others' minds throughout each and every day.  I think something and Les says it; Les thinks as he empties his stoma bag in the bathroom "Oh I need to write orange air freshener spray down on the grocery list" at the very same moment I pick up a pen and add it to his list. We have always had these little moments but now they occur several times a day, every day.
   It means we hold each other and weep when our hearts are too full to contain our emotions. 
   As a witch, the moon in its many phases is sacred to me and I have a deep love of La Bella Luna. Les and I have watched five years of full moons come and go but the full moon on September 17th was more meaningful than others. We were sitting in our recliners, side by side, watching telly as I noted the moonrise. I said to Les, 
   "Look baby, the Harvest moon is rising." Les leaned over so he could see it and as he looked out the bow doors his shoulders began to shake. He was crying, overwhelmed by the beauty of the moonrise.
   "Why does it take death to make us appreciate the beauty all around us? I never really looked at the moon like this before and saw how really beautiful it is." Tears splashed his cheeks as I held Les in my arms and cried with him, thinking, "How many full moons does he have left to see?"
   It means Les has drafted a list of boat projects he wants to do as longs as he feels well enough to keep working. Les has always enjoyed working with his hands and building things. His dad was a coach builder back in the days when buses were constructed around wooden frames. He used to bring little Les to work with him and Les learned the pleasure of working with wood and building things to last at his father's knee.
   Of course this also means Les tricked me recently by asking me what things I would change on the boat after he was dead and gone. I thought he was asking out of mere curiosity. I didn't take into account he might had an ulterior motive.
   "Well, I want to tile the galley counter tops and replace the kitchen sink, and I want to do the same thing in the bathroom." Both projects seemed like something I could tackle on my own with a modicum amount of assistance. 
   Suddenly both items have been added on to his current project list. Cheeky Sod!! That list is long and some days I feel like we live in a permanent construction zone. Of course, such a list means that we have to make frequent forays out into the world at large for parts and supplies and I have to ensure Les doesn't overdo things--which can be tantamount to asking the world to stop spinning for a day, but Les gets such obvious pleasure and satisfaction out of each job. He also tells me, "Jaq darling, I just want to do as much for you as I can while I can still do things. I want to know I left you in good shape with the boat and all is the way you want it to be."
   A lump rises in my throat and I get tears in my eyes as I look around at all the lovely things Les has done to this boat for me over the years: moving the fridge from the floor to the top of the galley counter, plumbing in the washing machine directly to the boat's hot and cold water system, building book cases for my books, and pull out drawers in the galley for my pots and pans; mounting a spice rack above the kitchen counter and a knife magnet on the wall; making slim, stylish dish and glassware cupboards out of Ikea Billy bookcases; extending our bed from 4 feet wide by 6 feet long to 6 feet by 6 feet; sourcing the foam padding for the extra mattress extension, installing sliding baskets into the wardrobe cupboard where the washer used to live, for clothes storage, building a new larger medicine cabinet in the bathroom and installing a composting loo--all this Les did out of love for me. 
   The current list is long and he has now ticked off: 

• Reinforcing the hinges on the leaning wardrobe door (which doesn't lean any more) 
• Replacing the broken hinges on the front bow steps
• Updating the front of the saloon cupboard with new fronts and beautiful brass pulls
• Replacing the kick planks on the front steps with new wood look vinyl planks
• Buying and installing a new TV with up-to-date technology (Les swore HD could not possibly make any difference in the clarity of the picture. Now that we have replaced our twelve year old, 15 inch, non HD telly and separate Freeview Box with a new 24 inch, Hi Def, digital unit with a built in DVD player, Freeview and wireless, Les cannot stop staring in delight at the picture! We are both looking forward to streaming movies directly from Netflix on our TV instead of our computers. 
• Replaced the galley drawer and cupboard knobs with lovely new brass cup shaped drawer pulls that don't catch my pockets and look gorgeous!

   What is left on Les' Self defined Honey Do list? 

• Kitchen sink and counter tops (we spent a lovely, quiet Tuesday in Ikea, looking at the displays, choosing a sink, while Les examined it in situ and we took the bus to Apsley and visited a tile showroom to pick out tiles for the countertop.)
• Bathroom sink (Another Ikea purchase)
• 3 plug USB station (it will be mounted in the saloon cupboard below the new TV)
• Rear Seat boxes (the wood is cut and the stain is bought)
• Front locker top (wood to be purchased and delivered to boat)
• Rear hatch cover (we lifted a great idea from Tom on NB Waiouru, involving ball bearings and we are contracting with a marine engineer to do the work)
• Rear Engine hole Cover (still batting ideas around)
• Re-glue the loose wood trim and port hole frames throughout the boat
• Raise the dinette table
• Install a corner shelf in the bedroom with a reading light mounted underneath on Les' side of the bed
• Install a shelf in the front bow closet
• Purchase stainless steel T studs and have them welded to the bow of the boat so I can reach them to moor up.

Les is over the moon about how much he can still accomplish. He just said, "I am so chuffed Jaq. I can still do a lot as long as I rest in between jobs and I'm having so much fun doing all this."He doesn't stride along anymore, he shuffles now, but he still gets from point A to point B.
   I wouldn't want anyone to think all Les does is work, work, work. 
   We have purchased advance tickets to three matinee movies at the Rex Cinema in Berkhamstead. We've seen Jason Bourne and Eye in the Sky which was riveting! We will see Dare to Be Wild and Eight Days a Week next month. We've sat out at our little bistro table on hot, muggy evenings and enjoyed delicious ham sandwiches, fresh fruit bowls and homemade Brownies; we took a bus into town to have a mooch around and Les treated me to another al fresco dining experience with a picnic lunch from Wenzel's bakery. We sat on benches in the shade and ate sandwiches on lovely brown bread, with crisps (potato chips) and Carrot-Orange juice before hitting Clas Ohlson and Lakeland for bits and bobs. 
   It means we have trips planned: three days in London, using our Avios points, in December when the boat is blacked, and if we are both in decent shape perhaps a seaside trip somewhere.  It means we grab life by the fistfuls and gobble it up in laughter and tears. It means we make the most of each amazing moment we live because we know now how truly precious each moment is for us.