We are very lucky to have been allowed to share this post by Sonia who runs and writes Mummy Constant - a lovely blog about her family life.
It was originally published on Sonia's site back in July, and she has kindly allowed us to add it to our site to help us talk about the care we provide as part of Hospice Care Week. We're very grateful to her for allowing us to share her story here, and for her kind words about the care given at Sue Ryder - St John's. It was originally published under the title "Thursday thoughts - and so it begins."
"Today marks the day where this time last year Grandad was taken to our local Sue Ryder hospice in an ambulance. I wasn’t there, but it sounded like a painful, emotional and heart breaking experience.
Grandma had been looking after Grandad, at home, on her own (mostly) for the entire time Grandad was ill. He was an old man, 90 years is a grand age, approaching his 90th he was getting wobbly going up and down the stairs and his hands would shake when drinking his tea. The kind of things you notice but you don’t say anything and inside you are left with those empty thoughts of “oh no” Grandad is getting old. She helped him for all that time to get up the stairs, bring him his meals and drinks, snacks and motivated him to keep moving himself.
We were told "that" news
It all started after his 90th birthday when Grandad grew weaker and weaker, one day he was so weak Grandma couldn’t even get him to sit up and even my mum and brother couldnt help. He was taken to hospital and given blood. He had an MRI scan to see what was going on and that was when we were told “that” news.
The news you just do not want to hear, the big C word. Well, in fact it was the big T word in this case; Grandad had a tumour.
It was by his liver causing his glands to squeeze so in effect his liver wasn't going to work for much longer. They couldn’t operate. He was too weak. We could just keep him comfortable and loved. We were not given a time scale, we were not given specifics. But we didn’t realise at that time, in 2 months we would be saying goodbye.
No one was prepared
2 months! Everything happened so quickly, too quickly. No one was prepared. No one felt ready. Grandma finally made the decision, with some help and support from her nearest and dearest (us), that it was time to get him into proper care. So on the 24 July 2013 he was taken to St Johns hospice. Mum said they were told the ambulance would be arriving at midday, they were early, 10:30am he was on his way.
What especially breaks my heart about the quickness of the 24th July is that my Mum and Grandma did not prepare in time, how could they the ambulance was early. But they didn’t get the chance to sit down with Grandad and explain to him what was happening.
At this stage, he was still “with us” as in he acknowledged people, recognised faces and he was very much able to have a small conversation. He couldn’t do a lot of other things though and he couldn’t remember things. He didn’t know where he was going, but I am hoping he knew deep down and was happy that he could rest and Grandma could rest too, by his side.
I went to see him in the afternoon, he seemed comfortable and happy enough. Mum seemed positive as the doctor had said that he might be able to come home. Which was great, he could come home for his final days and be with the people he loved in the house that he so dearly loved. It was great news and we all felt really happy that it might happen.
It was scary that he was in the hospice, away from his home. Grandma didn’t like coming back home to an empty house, with an empty hospital bed in the lounge. She didn’t like waking up and having no one to look after, only one cup of tea to make. But she knew Grandad was cared for and in the best place. And by jove the staff at St Johns were fantastic.
Happy with the new location
Thursday the 25th came and went and Grandad still seemed comfortable, reasonably happy with his new location and keeping the nurses on their toes, giggling and smiling at eachother as they tendered to him. That was a great quality that Grandad had, which he passed down to me, how to be silly and informal, when possibly not quite necessary but always resulting in making people laugh and smile.
All the nurses commented on him, how lovely he was and how funny. I am glad they got to see Grandad's personality, got to understand how lovely he was and how amazing he was inside.
On Friday 26th 2014 things changed.
I took Grandma to the hospice for early morning so she could spend her day by Grandad’s side. Like she did the day before. But when we got there he had a dressing on the side of his head, he had fallen in the night – we think he just tried to get up and forgot that he couldn’t really use his legs. He had this bang to the head which seemed to have knocked him for six.
He was very quiet, sleepy and not making any sense anymore, like he was in a dazzled state. The doctor came around and discussed the incident with us and further explained that it would be better for Grandad to put him on the drive. This basically means that he is given pain relief and a drip feed through a drive in his arm, which keeps him comfortable – as much as can be.
It was the beginning of the end
I don’t really know what I was expecting from this, whether I thought he would be up and talking again in a few days or whether I thought that was it, he was going to be gone that night. I have no idea what I thought, all I knew was that I had this magnetic feeling in my stomach, a feeling that made me want to stay right by his side and not leave him. I did not want to go home. I did not want to go to work. I just wanted to stay right there, with him. So I did.
He was in the hospice, in total for 8 days. 8 very long and very emotional days. I stayed with him constantly from the Friday until the following Thursday. Me, Mum and Grandma basically camped out in his bedroom with him. The staff were so supportive, nothing was too much trouble and they did all they could to help Grandad and us along the way.
Away from home
It was a long week. I missed my husband and I missed my children, but I knew where I needed to be for that time. I knew my children would forgive me and I knew that hubby would be there to offer a cuddle of support when I returned home for changes of clothes and a quick “hello family”.
But I was needed elsewhere. For Grandad. For Grandma. For Mum. For my uncle, brother and sister who didn’t stay there but felt safe in the fact that we were there. People deal with this in different ways and my family is no exception. I was very practical about it, I looked up what was going on, I researched what was happening. I read that Grandad will still hear us, even though not responding, right until the last minute. That kept us safe. That kept us going. We probably made him laugh with all the rubbish we were talking over the days.
A few days before he passed I had my opportunity to sit with him on my own, I needed to say my goodbyes, personally. It still kills me to this day that I didn’t get to speak to him properly when he was “with us” so to speak. But I spoke to him when he was at least able to respond in a small way, a blink.
He was blinking to acknowledge I was there, blinking to acknowledge what I was saying. I hope. I told him I loved him. Very much. I told him the children loved him. I told him I was glad he gave me away on my wedding day that he made me very proud. I finished off by saying to him that I hope he was proud of me. He blinked at me. His eyes were watery. It was a precious and special moment.
I will have it with me until the day I die. When I see Grandad again and get to hold his hand. I miss his hands."
Sonia Constant runs her own site, Mummy Constant, where she writes about the life and times of her family, the Constants. You can find her on Twitter at @MummyConstant and on Facebook too.If you get the chance, do check out her wonderful website: mummyconstant.com