How we can help Patient stories Susan's story I was in my twenties when I unwillingly (I was perfectly happy with my job in Aylesbury) moved to Sedgeford. My then husband, a local government officer, wanting to quit the ‘rat-race’, save our very rocky marriage and retire to run a village post-office. But rocky marriages continue to rock and eventually break, even in the most idyllic of settings, which is exactly what happened. I met Bernard when I was twenty-eight and he was seventeen years my senior. We were a very unlikely pair. He a Professor of Anthropology of world-wide renown, having taught at Cambridge, Harvard and UCLA and me an “Also ran” having left school at sixteen to care for my mother who was dying of cervical cancer. Our coming together formed a large and happy tribe, he the father of two, me the mother of four. So with six off-spring between us, undaunted, we went on to have two children, Hatty and Charlie. It’s difficult to write about Bernard without painting him to be a saint. He truly never argued, although I would argue with him! He always saw the other person’s point of view; how can one argue with that? He was a terrific father and an amazing stepfather. It was his children and his stepchildren in a united front that bore him to his final resting place. (He said in his letter of wishes that it was his children and his stepchildren that answered the question –“What is the Meaning of Life.) Bernard changed my whole life, he was not only an academic but also a farmer, and so I took myself off to Agricultural College and learned the trade! Many happy years were to follow. I tended our large flock of sheep and I was very competent at driving the Combine Harvester! The sight of a new born lamb still gladdens my heart, although I see them year after year, the sensation is just the same. We travelled widely, Bernard lectured all over the world and what a thrill it was to visit the African fossil sites amidst the wilderness in Kenya and Tanzania, a good life. Then, oh then, we come to 2004, and our lives changed, as it turned out forever. At the beginning of that year Bernard underwent surgery for a kidney problem; it later turned out that he’d had this from birth but miraculously it hadn’t given him any problems up until then. When he woke from the anaesthetic his right hand was shaking. This, it turned out, was the beginning of Parkinson’s disease. On November 5/6th of that year, whilst we were away from home, a stray firework set fire to our house and burned the rear part almost to the ground, thankfully the Queen Anne facade was preserved. Then the temporary accommodation we were living in whilst repairs were taking place was burgled. On the 20th of November 2006, what we had been led to believe was Bernard’s nasal polyp was diagnosed as a neuroblastoma, a tumour and an exceeding rare one at that. It was difficult to find anyone to operate, as the tumour had spread up into his brain. CANCER, I had never been so frightened in my life, I had to fight for breath when hearing that awful word. Both my parents had died of cancer at the ages of forty-five and fifty-five. For me, it was a death sentence. Eventually, we ended up in London at the Charing Cross Hospital. He had his operation on Valentines 2006, and again three weeks later. He went on to have radiotherapy and was given the all clear in 2011. Meanwhile the Parkinson’s crept slowly onward, his walking became unsteady, he had tremendous bouts of hiccups day and night and lasting for weeks and weeks, and of course that irritating tremor that at times made it impossible to get food into his mouth. In 2006 he handed in his driving licence, I so admired him for this as many men I know refuse to give up the steering wheel under any circumstances! So I became the driver and we still had a very good quality of life. But year on year his problems got worse. When he was first diagnosed with Parkinson’s we had made a pact, that there was to be no self-pity from either of us, and there never was. He bore Parkinson’s bravely and without complaint, although he did curse rather when plagued with the retched hiccups! For the next few years we had to take what the disease offered us; Parkinson’s is unpredictable and some days were good, days when he could walk with a stick, other days his poor body refused to do what was expected of it and he was confined to his wheelchair. It wasn’t all doom and gloom, we did have holidays and best of all we laughed a lot and cried seldom. In 2011, after a really terrible fall down the stairs, breaking his nose and injuring his cheek and forehead, we moved to a single story cottage, stairs were no longer an option. Parkinson’s is a depletion of dopamine in the brain, which controls how the muscles of the body behave and, despite dopamine medication, the muscles of the body gradually misbehave more and more. Walking becomes very difficult of course, but there are other muscles that we don’t really think about, the muscles in the throat are affected, talking becomes really hard and exhausting and it is impossible to control the flow of saliva, there is constants ‘dribbling’ to cope with. More frightening still, the swallow reflux goes, so that mealtimes can become terrifying. He choked so often that I ended up by learning the Heimlich maneuver, and become quite efficient at it, suffice to say he didn’t choke to death! By 2014 I couldn’t leave him on his own. He fell often, choked often, he couldn’t attend to his personal hygiene, nor get to the loo without help. By 2015, I was with him all the time. He only wanted me to care for him, and if the truth is known I only wanted to be with him. I had spent over half my life with him, we were two halves of a whole, and neither of us wanted to be separated. He couldn’t turn over in bed by himself and needed my help. Even by this time, Parkinson’s would give us a rare day when he would feel better and we would seize upon these days like children given a precious gift. Books had always Bernard’s refuge. He was an avid reader and gobbled up the written word at every opportunity. So it was another blow when in August 2016, he lost the sight in his left eye. He still read, but he struggled to focus. His choking became so much of a problem that in 2016, it was decided that it was too risky for him to eat solid food and he was fitted with a peg feed. This consists of a little plump and a tube that feeds ready prepared food directly into the stomach and, in theory, cuts out the choking. He was in hospital for a week having this fitted and I was able to be with him and continue to care for him from 8am to 8pm, thus enabling me to learn how to feed him and administer his medication through the tube. On top of this he was allowed seven teaspoons of pureed food at mealtimes, this was to keep an interest in taste rather for any nutritious benefits, but as he choked even on that, and as all food seems to become an unappetising brown mush when pureed he soon decided not to bother. By Christmas 2016, he had no control over his bladder and soon lost the little independence he had. Christmas was both difficult and sad. In January of 2017, Bernard contracted pneumonia. He was no longer able to stand or bear his own weight. I had to call in the doctor who advised that he should go into hospital. I had promised that he would not be taken into hospital and that he would stay here in our home, no matter what. It was at this point that he asked the doctor for DNR (do not resuscitate letter). Our GP, then advised that I really needed some help; Bernard wasn’t a big man, in fact he was very slim but, as he was unable to stand he could no longer be maneuverer by just one person. Enter the Hospital at Home team; these wonderful men and women came morning and evening to give me that much-needed pair of hands, they also arranged for a hoist so that he could be moved from bed to chair. After several weeks I was able to arrange for my own carers to help morning and evening. Until his last weekend, I was able to get him up and he was able to sit in the sitting room and feel the pulse of the house around him. I am so pleased I did this. I hate the thought that he could have spent his last few weeks tucked away in a bedroom. It was becoming apparent that I was becoming not just tired but completely exhausted. I was by this time surviving on just a few hours sleep a night. Enter Tapping House; I can’t remember how I came to be referred, but Sarah Klumper the Macmillan Integrated Social Worker from the Hospice came to see us. Sadly Bernard slept through the whole visit! Sarah arranged several things. She arranged for a nurse to night sit for several nights a week, the nurses gave me absolute confidence; I knew that they would wake me if he needed me. I was confident in their knowledge of Bernard’s condition and I knew that they were outstanding individuals, professional, loving and caring. Sarah also arranged a day sitter that would come and sit with Bernard for a couple of hours a week, so that I could run errands or simply take the dog for a walk. Bernard was not completely comfortable with me not being close at hand, but accepted that I did need to do essential things outside the house. Sarah also arranged for some alternative therapy, back massage and reflexology, not for Bernard but for me! I’d cared for Bernard for so many years, that having someone ‘care’ for me was a blissful surprise. I was drawn into the Tapping House family and given so much support. Support that is still on-going. It is at about this time that he filled out ‘The Yellow Folder’. This is a document offered to those nearing the end of their lives. Here the dying can write down their wishes concerning the way they want to be cared for. Bernard said that he did not want his life prolonged by artificial means. He asked that he could have pain relief and be made comfortable in his last days, but no medication other than that. He also specified where he wanted to be buried – on the chalk down-land overlooking our cottage. I can see his grave now as I write this, I find his nearness hugely comforting. By the second week of March he was very poorly and on oxygen; at his next visit the doctor took me to one side and suggested that the feeding peg should be removed. I found this completely shocking, how could you remove food and water, surely that would paramount to murder? The doctor explained that Bernard’s organs were shutting down and that soon he would be unable to tolerate the food and he would have terrible cramps and the food would go straight through him. Bernard was already in a great deal of pain, even a slight touch to his skin hurt. That day he was connected to a syringe drive. I think the next moment was one of the worse moments of my life. When the doctor had left, Bernard said “We have been together for forty years and you’ve never lied to me. Please don’t lie at this point, be honest, tell me exactly what the doctor said.” To which I had to answer that the doctor advised removing the food and that he had only maybe three or four days to live. He asked to see the doctor himself, and our GP called the next day. Although his speech was achingly difficult to understand and he had to have many attempts; Bernard said that he didn’t want either me or his children to have to make such a hard decision and that he wanted to make it himself. In front of the doctor he asked me to remove the food which, with a very heavy heart, I did. This was Friday 10th March. I had sent for our children and James his elder son had visited a few days before. I held him in my arms the whole of that Friday night, and talked to him, I told him that the periwinkles were out up at the top of Hall wood. I recounted some of the wonderful things we’d done together. I talked of our children. I told him how very much I loved him. His breathing had been ragged all night and at eight o’clock the next morning I phoned and I asked that the district nurse call. At about nine, I showered, leaving our daughter Hatty talking to him. I returned to our bed and lay down beside him. I asked if he wanted me to hold him, he replied with a very clear “Yes”. I put my arms around him and held him to me. The children took the dog for a walk. About an hour later; his breathing suddenly became easier – quieter. At that moment I heard the nurse at the front door, and she let herself in. I said that he was now breathing easier. Then she told me that he had ‘gone’…………………. I stayed with him for a very long time; the children came in and said goodbye. Then with the help of the nurse, I washed him and changed him for the last time. I think Mother Nature somehow takes over at this point in our lives. Numbs our brains in some strange way; so that one goes through the days and the nights in a raw, tearful, dream, thus it was with me. I got through the next couple of weeks, not really conscious of the passage of time. My friends and relations supported me, especially the children, putting aside their own devastating grief to prop me up and keep me going. But after a while, everyone must go back to their own lives and it’s right and proper that they should. Then suddenly I was alone here and I had a bewilderingly bad time; from being the strong woman that had nursed and supported Bernard for so long, I became an insecure, weeping, person. I daily questioned whether there was any point in being alive if he were not. And there are times when I still feel that way. But I was not alone, the Hospice still continued to care for the carer. I was given bereavement counselling at the Hospice, a safe place where crying is completely acceptable, and where it’s okay to laugh too. Walking through that door is like being enfolded in a warm loving embrace. The Hospice has been life saving for me. It’s seven months since Bernard died and I still attend the monthly coffee mornings for the bereaved and the monthly stroll together around Sandringham woods. It’s so cathartic to talk to others that have been through this very dark place. We all support each other. We all know exactly what each other is talking about. We’ve all been there, the timings are different, the order of events are different, but the grief is the same. I know that I still have to travel a very long and lonely road and that at times I will feel as If I am right back to the day I lost him. But I also know that if despair creeps into my heart I only have to pick up the phone, and at the end of that phone line will be the voice of hope and comfort. I know that The Norfolk Hospice will still be there, caring not only for the sick, but caring for the carer. Death is such a taboo subject. We don’t talk about it, yet we will probably all have to face the loss of a loved one, and we all must die. To say that Bernard had a good death sounds strange, even to my ears. But he was in control of his end. He chose the place, the person to be with. I am honoured and thankful that I was able to share his last very precious breath, and that is how he chose it to be. On the anniversary of his death March 11th at 9:55am I shall begin my walk of the Camino de Santiago. I hope to cover the 500 miles or so by the 29th of April, his birthday. I intend to do it alone, carrying my thoughts and my grief inside me; that I might lay that burden down in Santiago and draw upon all that was good in our lives together. For when you lose the person you loved most in the world, there is nothing left to be afraid of.