Matt & Becca's Story
You can see Matt and Becca tell their story about their dad, John and their Christmas Day spent at the hospice, by clicking the banner above. Below, Matt has written about their experience.
Matt’s story in his own words…
I spent most of my teenage life knowing that my Dad was terminally ill. He was diagnosed with his brain tumour when I was fourteen, four years ago, and when I heard about it I was understandably scared. I didn’t know what to think or what to do. I couldn’t fully comprehend what was going on and why it was happening to my family. However, my Dad continually proved all the doctors wrong as he repeatedly defied all the odds and went into remission for long periods of time shortly after being given a short time to live. However, the final time we could see that it was different. He struggled to fight back and eventually went on to pass away.
In September of 2013 my Dad suffered a massive seizure at home, I was in the garden and was fortunate enough to be nearby and called my Mum down and we phoned the ambulance and got him on the floor. Whenever he had a seizure, which was uncommon, it was terrifying. He went completely out of control of his body and rolled around on the ground making noises. The ambulance crew came along and took him to Treliske, who swiftly shipped him back home after saying that there was nothing they could do. We were in a worse position than we had been in before they took him in. We had very little medical equipment with us and no care support for us. We had essentially become carers to for him. It was a horrific feeling to have to see someone that you grew up respecting and admiring in a place where they couldn’t do much for themselves. After a few days a doctor was called out because he wasn’t coping at home. We didn’t have any of the equipment or expertise that was needed to care for him. The doctor said that he had to be readmitted to hospital. A Macmillan nurse then gave my Mum the choice of either being readmitted to hospital or to enter into St Julia’s Hospice. She then asked Rebecca and me to see what we wanted to happen. We weren’t keen on the thought of him going back into the hospital that had sent him home after evidence of him being so horribly ill. But at the time I didn’t have a clue of what the hospice actually did or what it was like so I was caught between a brick wall and a hard place. I ended up saying that I was happy with whatever my Mum wanted to do, as I knew that she would do what was best for my Dad. I can’t remember what my Sister had said, but I am sure she had the same feelings as me. So we decided that he should have been sent to the hospice.
“at the time I didn’t have a clue of what the hospice actually did or what it was like”
My Mum tried to explain what the hospice did, but she kept emphasising too much that it wasn’t a place that people went to die. This then led me to believe that it actually was a place where people went when there was no more time for them, and that my Dad was going to go. It was a horrendous feeling when we were driving up to see him in the hospice the first time. I was worried that it would be quiet and full of grumpy nurses that would limit our time with him and make it difficult to be a family. But as we pulled up the driveway and into the hospice car park, it was quite pleasant. There was a small walkway filled with flowers and a lavender plant on the right hand side. It was a relaxing feeling walking up there, but there was still a small sense of foreboding lying deep in my heart. I thought that even if it looked nice on the outside, the inside would be completely void of all of the niceties of the outside.
Before I go on to the next part, I have to say that my family are extremely close and that we were used to smiling and laughing with each other. However, because of my Father’s dire condition whenever my Mum smiled, it was broken and shallow and shortly followed by tears. So I had partially forgotten what a true smile was.
So as we walked in through the doors of the hospice to see Colin, one of the volunteers, grinning from ear to ear I really didn’t know what to think. He greeted me and my Sister, Rebecca, by name. “You two must be Becca and Matt!” He gave us a short tour of the hospice and showed us everything we needed and told us that if there was anything we needed just ring the bell. Then we went to see my Dad. At home he had been in a great amount of pain and wasn’t himself. At the hospice he still wasn’t completely him, but he wasn’t in anywhere near the same amount of pain and managed to show that it was still him and he was still our Dad. We were released from being carers and back to being his kids.
“When me and Rebecca drove up every day to see my Dad we used to get to a certain part of Hayle and said “Hospice, sweet hospice” because it had become a second home.”
Over time we learnt all of the staff’s names and we became good friends with all of them. We were back to our silly ways and were allowed to muck around and make each other laugh and slide down the corridors in our socks. When me and Rebecca drove up every day to see my Dad we used to get to a certain part of Hayle and said “Hospice, sweet hospice” because it had become a second home. We were there more than we were at home, and if I am honest I felt more comfortable there than I did at home. It was the feeling of security for my Dad that made me feel safe. I knew that as soon as I pressed the buzzer there would be a group of nurses and carers ready to look after him. And even if it was just a small thing then we could buzz them in. The doctor’s had told us that the buzzer was as much for the families as for the patient. We played around with the nurses and made paper aeroplanes to throw down the corridor. It might seem childish or silly, but it had meaning behind it for one of the nurses and she told us a personal story that helped us to connect to her with them. And in reality we needed to be reminded that we were just children and that we were allowed to have fun. It got to a point that we felt so comfortable that we ended up having me put on Rebecca’s make-up for her and her crying with laughter and rocking the whole hospice with our family’s laughter.
“rocking the whole hospice with our family’s laughter”
My Dad and I also had our own, more personal, memories inside that room. I stayed up late with my Dad and my Mum and Sister left so that we could have some time together alone. We watched films together and he would fall asleep in the middle of them and then continue it the next day. We joked about how terrible the plot holes were and picked flaws in everything. But we were allowed to be ourselves and as noisy as we liked, as long as we didn’t disturb other people. We made some incredible memories in that room.
At one point, just two or three weeks before Christmas, we were told he wouldn’t make it until Christmas, let alone the end of the year. So we did everything my Dad wanted to do. At one point he wanted to have a week of just takeaways. As much as this might sound nice, it had driven me to the point where I was craving a lettuce leaf. The hospice staff helped us out with it as much as possible. They got plates ready for us, they recommended the good places to eat and allowed my Dad to have a glass of beer or cider to go with his meal!
When it got to Christmas, which my Sister and I were dreading, we headed down to the hospice first thing. All of the presents were there to open with my Dad lying in bed with that smile of him. Then one of the staff told us how everyone in the hospice woke him up by going in to see him and telling him it was Christmas. They all wanted to see his face when he woke up and they said it was completely worth it. They described the biggest smile possible stretching across his face. After that we opened our presents and spent the day as a family. At lunch they called us in to the room at the bottom of the corridor. My Dad walked all the way, which was the furthest he had walked in a long time. When we got there, there was a small table with four place mats set out with crackers and wine glasses and everything ready for a Sunday lunch. Two of the nurses were stood outside the room with grins across their faces. They knew how much it meant to us to have that and set it up with music playing in the background. The food, as per usual in the hospice, was gorgeous and we enjoyed it and the company of each other for our last Christmas together.
Whilst a lot of the time we spent in the hospice was lovely, there were still times that we had to be serious. Times where my Dad deteriorated and he nearly passed away. This happened several times and each time the hospice staff respected our feelings as a family and always ran everything through us all. If we wanted to know exactly what was happening then we could. They cared for him so incredibly well. I don’t know how they managed it but they got him to walk, very shakily, but still walk up and down the corridor. And despite the massive, awful things happening inside my Dad’s head they managed to keep some fragment of him in there. He still managed to retain the knowledge of us, most of his memories and the fact that he loved us. He told us it nearly every day he could and he always hugged us and gave us a huge smile whenever we came in to see him. They kept my Dad, not just alive, but they kept his mind intact as well.
“My family and I gave her the nickname “Hospice Mum” because she fussed over me so much.”
Eventually they deemed my Dad well enough to go home for a while. We knew he wasn’t completely healed, but they gave us the medical, and emotional, support to get him home and allowed us to feel safe with him there. He was home for short periods of time at first, with him coming home for an evening here, a day there.
And then it came to my birthday and he came home for the whole day then (see above). We had all of the family around and it was awesome. My Dad was alive and home for my 18th birthday. Then he got to a point that he was stable enough to sleep at home. They helped to get a proper bed for him downstairs and everything else he needed. They packed us with as much medicine and drugs and equipment that would make us feel safe and said there was always a bed waiting back at the hospice if he needed it. He came home and stayed for about 2 weeks. He had all the care he needed and we were almost like a proper family again. We were able to eat around the table and joke around like we used to. But the time of prosperity at home passed when he suffered another seizure. He was eventually taken in to a nursing home because the hospice was full. It was a nice place, but the numbers weren’t up to the care that I felt completely comfortable with. They dealt with him excellently and they were so good with us. But they didn’t have the time to know us like the hospice staff did. One of the hospice staff, on her few days off, even came over to see us all at the care home. He stayed there for a week before the hospice found space for him.
“despite the massive, awful things happening inside my Dad’s head they managed to keep some fragment of him in there.”
On the last week of his life, I went up to see him every morning, by myself, just to see him and see how he was doing that day. He wasn’t always conscious by that point, and if he was then he wasn’t always making sense. But he was there and he was alive and he was happy to see me. I eventually had to leave him to go to Sixth Form, but not before I had a talk with the sister of the hospice. She would ask me if I had packed my bag, had breakfast and cleaned my teeth. My family and I gave her the nickname “Hospice Mum” because she fussed over me so much. Then I would return in the afternoon to see him again. He would usually be more awake than in the morning and would be able to talk more.
Two days before he passed away, it was just me and my Dad again in the morning. The nurses had just left to give me and him some privacy. He was sleeping and I recounted some memories to him, all of the concerts we went to, the Olympics we went to together and the holidays we went on together. Pete, the cleaner passed the room to see me talking to my Dad. He knew that it was near the end for him and started saying about how lovely it was that we had those memories together, and I told him about my Dad and everything we had done together and we just spoke for a while. Even though he was “just a cleaner” he reassured me and made me feel proud of what we had done together. He seemed to be a calm voice throughout all of the horrid chaos that was going on around me. Then I looked around and saw the other nurses and carers and they were the same. They cared for us and were there for all of us. They dealt with his symptoms and I even managed to get one last hug from him that day, despite him being unconscious and basically unresponsive all day.
The day that he finally passed away, we were told by one of the nurses to come down to the hospice as something had changed. We were used to leaving in a hurry by now and were out of bed and then the door in about 15 minutes. We got down there and we could tell that he was going that day. The head doctor of the hospice came in and confirmed that and we were, understandably, devastated. The way he was going to die was going to be messy and undignified. But they somehow managed to allow him to keep his dignity throughout the day. He was treated with the same respect as he was the day he went in. The hospice was quieter and it seemed sadder at first. But as the day went on, we came back with our usual cheerfulness, telling stories about him doing something silly. The nurses that stayed with us throughout the whole thing were laughing along and telling their own personal stories of him. When their shift ended or something big came up, they would swap out with the other nurses and would tell us how much they thought and cared for him. Some of them looked visually upset, but we thought that that was the right thing to do and it was sweet of them to care so much. It took all day for him to go and we had most of the family that live nearby and were able to come down to see him. It was emotional and difficult, but everyone supported everyone. In the evening he passed and we were all holding each other and supporting each other. We all cried together, and the nurses that were there at the time cried with us. They hugged us and allowed us our time to ourselves. Then everyone left for me to have my time with him before we left. I stayed there for a long time with him just to say my final goodbye. The nurses were respectful and let me have all the time I needed and every so often would check up on me just to make sure I was dealing okay and if I needed anything they offered to get it. All the way to the end they treated us respectfully and with care.