IN HER Primrose Hospice column this week, CEO Helen Garfield spoke about a story called ‘My John and Primrose’ which touched her as no other story had.
Unfortunately the piece written by Thelma was too long to include in the paper but we are able to bring it to our readers here online:
My John and Primrose by Thelma
I first met John on a cruise in 2010. We were both widowed and had both gone on holiday with a friend. The four of us ended up on the same table one evening. (He had later told me that he had stood looking for some seats and noticed me and my friend and thought that we looked like nice ladies). He was kind, friendly, engaging, just really good company. He had a little sparkle in his eye when he smiled. My holiday finished a week before John’s, so while he was still on the ship he phoned me every few days. Over the following months we met regularly, travelling up and down the motorway, getting to know each other and each other’s families.
I knew John had breathing problems; in fact he was open and honest with me and very early on told me that he was not going to get better. As we got to know each other we knew that, travelling to see each other wasn’t practical. We were both retired; there was no reason not to be living together. John asked me if I would be able to look after him as his breathing got worse and, more than that, would I look after him at the end of his life. I loved John. I said yes. So with our families’ encouragement, John moved in with me. We settled into a lovely routine, going out, seeing shows, spending time with family.
In 2013 his breathing became more difficult, we had a stair lift installed and John got a mobility scooter. Later that year he had an emergency admission to hospital and his consultant suggested we have support from Primrose Hospice. The Palliative Care Consultant phoned us and arranged for us to meet him and the lead nurse Katy. Before we went we were a little anxious that everyone else would be very “ill-looking”. We needn’t have worried. It wasn’t at all how we imagined. We were pleasantly surprised. John went to the Day Hospice the next week and every week after that.
He gradually got to know the nurses and the volunteers. He wanted me to stay with him for the first four weeks. The nurses encouraged me to do this. I got to know them and they got to know me. After those first weeks, John became more confident and he said he would be fine without me. It meant that I could go and do all the things that I needed to do without rushing or worrying about him. Primrose became like a home from home, a second family. He could chat through his concerns with his nurse Kay and he also talked about how and where he would like his future care. All the nurses became very special people to him and he trusted them completely. For those four and a half hours each week he relaxed with people (the other patients and volunteers) who became cherished friends. He enjoyed his hot lunch, he laughed, he talked sport, he was himself and he always brought me home a freshly baked cupcake. I attended the Carers Group every month and I too made friends. It was good to get information about finances, care etc, but so good to meet up with other people who were in a similar situation to myself. Many of these other carers have become lifelong friends. We have supported each other through such difficult days. I believe we will always be in each other’s lives. I got to know the nurses really well and if I was worried about John I could phone them. Every now and then my phone would ring and I would hear a familiar voice, “Hello Thelma, nothing to worry about, just phoning to see how you are.”
John began to struggle more and more. He couldn’t really walk more than a few steps without gasping and taking longer and longer to calm his breathing down. We met the Physiotherapist Karen and Occupational Therapist Anne-Marie. They helped us with breathing exercises, equipment and placing things to keep Johns exertion to a minimum. We also had an ingenious network of oxygen
piping at home. Still we were able to make the best of things and had a couple of short holidays at the Primrose Haven holiday home in Broadway. A lovely place, just right for us, we had our favourite shops and cafes to visit and the unit had enough adaptations that John was very comfortable.
In the summer the Day Hospice team put on a Garden Party for patients and their family and in the winter they organised a Christmas Party. There was always bunting, a choir, tea and cakes and a raffle. John would always buy £10 worth of tickets and would then come home with two carrier bags full of prizes. At the Garden Party he won a lady’s watch, (I wear it all the time). As a memento, about two weeks later each patient would be given individual photographs of the event.
In 2015 John proposed. I loved him very much and I wanted to say yes, but the practicalities were too complex. He mentioned it to his nurse at Primrose and she talked to him about having a ceremony of commitment with friends and family. The chaplain Keith phoned me and asked if I would like them to arrange a ceremony at Primrose. I said yes. They sorted out flowers, food, drinks a cake, the room. They asked the local garden centre Webbs to help and they provided a beautiful arch for me to walk under. A volunteer owned a deluxe car and offered to drive both of us to and from Primrose. Our family came, they did our photographs and a local journalist came and took pictures, (we were on the front page of the paper). It was a very special day. John’s daughter Karen did a simply wonderful speech. John gave me a ring. Keith spoke and he and a lovely volunteer called Ronnie sang. John’s nurse had had an operation, but she came in especially for us. There were tears and laughter. It was a beautiful and most memorable day.
Everyone at Primrose became an extension of our family. I didn’t feel that we were alone in our situation. John’s breathing became more and more difficult. The simplest of tasks became overwhelming for him. He had to give up his car. Despite this he was still insistent on seeing his friends at Primrose every week. So initially he had volunteer drivers collect him and then because he needed high levels of oxygen it became necessary for ambulance transport to collect him each week. Some weeks at Day Hospice he would have complementary therapies to help relax him, (these made him feel completely pampered). Most weeks he would go to midday prayers. He very much appreciated the chaplain Keith. John had talked to him about his funeral months earlier and he felt very much at peace about his decisions. Those midday prayer sessions of reflection and support became very important to him, (and he usually got lots of other patients to go too – he told me that the small room was often full of oxygen cylinders and wheelchairs).
John’s nurse Kay talked to both of us about what support we could have at home. He was becoming more nervous about me popping out and leaving him. Kay spoke about the Primrose at Home service. This could provide 3 hour daytime shifts or if things became a struggle at night, then a full night shift. The carer would support John through that shift, so that I could go out and do all the things I needed to do, or simply get some rest. We weren’t sure about this. However the jobs I needed to do were mounting up and I was becoming tired, so we agreed to a trial shift. The carer came. I wasn’t quite sure what I was expecting, but she was lovely. Sam was kind, put John at ease and made sure I felt that she was going to look after John in exactly the way he wanted to be looked after. I stayed with them for that first shift. Our confidence grew and I think John quite enjoyed having another person to help look after him. The Primrose at Home leader Helen phoned me each week to book in a shift. She always tried to keep to either Sam or Heather. Occasionally if something cropped up I would phone at short notice to ask for an extra shift. They always tried to
help me. But if there wasn’t a carer available then I would phone round our friends and someone would come and keep John company. (Thank you Pam and Pete and Brenda). These daytime shifts were a real blessing. Because John felt relaxed, I felt able to make good use of those few hours and I always came home with a little bit more energy.
Eventually we knew that he could no longer go to Day Hospice. Just leaning forward in his chair made him too breathless. Kay spoke with the Community Palliative Care Team and asked them to visit John at home. So we began to be supported by our specialist nurse Christine. Christine visited us regularly and we could phone her in between visits if we were worried. Our GP visited us when we needed him and we also met the local District Nurses. After a few weeks John could not cope with the transfers needed to be wheeled to the stair lift. So Christine and the district nurses organised for him to have a hospital bed downstairs.
John had always said that he was worried that it would be too much for me if he were to die at home, so when we thought his time was near, Christine organised for him to go into the Primrose Unit at the local hospital. The nurses there were very good. He didn’t sleep well and needed lots of reassurance. They often had to just sit with him and hold his hand. John didn’t cope so well being away from home and after a few days said he wanted to come home. The team on the unit were concerned that I wouldn’t get any rest, so we agreed to have a care package from an agency and a night time carer for every other night. Primrose carers did some nights and a care agency provided the daytime care package and another night. We were very grateful for all of the support. Once he knew who was caring for him that night he would plan what he wanted to do, whether it be a game of dominoes or watching football. Invariably though it would involve help with drinks, rearranging his oxygen tubing, breath calming exercises and always lots of hand holding, (he didn’t ever have the stamina for dominoes). I was still tired, but we managed. Our families spent lots of time with us. John continued to struggle with sleep, so together we put together music for him to listen to, made sure he could reach his light, the TV remote etc. We positioned his bed so he could see the fish tank and the reflection in the mirror of who was coming towards the front door. Often though, when he didn’t have a carer, I would spend most of the night sitting holding his hand.
Our last day together I have thought about and talked through many times. The one sentence he said most was “I love you”. He told me all the time that he loved me. He told his family, he told his nurse and his friends (the male friends too). On our last day together I remember telling him that I loved him, that it was ok, that he could go if he wanted to, and that I would be ok. He spoke out the name of his friend who had died a year earlier. I phoned his daughter Karen. I sat with him. The nurse came and helped change his position. I held his hand and then time stood still.
My darling John. He was a wonderful man. We had such happy times. I have such good memories. He was full of love and he thrived on knowing that people loved him back. My darling John, I miss his presence. I cherish the time we had together. I am so glad he was at home at the end. It was the right thing to do for us.
He would have enjoyed his funeral. Our family and friends were all there. Our friends from Primrose came too. Keith spoke about him as an old friend would speak. People told me after that it was the best funeral they had ever been to. Kay, Karen and Christina all phoned me afterwards to see how I was. It was good to talk to people who knew us both so well.
I am very grateful for everyone who helped enrich our life and our memories together. John I miss you, I miss the twinkle in your eye, I miss your words and I miss your hand to hold. My darling John
