Friday 15th March 2013
Dad, Derek, Barbara and I arrived at the hospice shortly before 10am this morning. The syringe driver had obviously kicked in overnight and I can’t recall whether Mum acknowledged us when we arrived, or if she wasn’t really aware that we were there. She was complaining about pains in her legs and wincing and groaning in pain. I instantly remembered the pain of leg cramps when I was pregnant the first time and thought that it would be best to try and elevate Mum’s legs and rub them until she felt better. As soon as I raised her legs she screamed out in pain and I felt terrible for hurting her. I then remembered about reading how sensitive the skin becomes when you’re near the end of life and that people don’t like to be touched or moved. We called the nurse who topped up the morphine and shortly after that Mum fell into a deep sleep. Little did I realise that it would be the last time I would ever hear her voice or see her awake. She didn’t say anything profound, just “Oooh, my legs really hurt!”
Mum did not wake up again on Friday or in the days to follow. The last time I saw her “alive” was on Thursday evening when she sat up, drank leek and potato soup from a beaker and ate two bites of a turkey salad sandwich.
David, Oli and Dylan arrived at the hospice shortly after lunchtime and sadly, they were too late to have a chat with Mum. I think she probably knew that they were there, but she was in such a deep sleep that she couldn’t communicate. David said that he instantly thought she was dead as soon as he walked into the room. The jaundice seems to be getting worse every day with the build-up of toxins in the body and her skin has started to collapse. Her cheeks are now really sucked into her face and the nurse tells me this is likely to get worse. She no longer looks like the Mum we once knew and loved.
Dylan is such a delight to have around, even at a time like this. When he entered the room the first thing he shouted was “GRANNY!” Normally he needs to be prompted to say words, but he said her name of his own accord, shortly followed by “GRANNY SLEEPIN’!” I really hope she could hear his little voice as I know it would have made her smile. We took him to the Day Room shortly after and took it in turns to amuse him. I loved seeing him as I haven’t seen him for 2 days and it brought me some joy to break up the sadness.
I asked Uncle Paul and Auntie Katie if they would put us up for a few nights as there are not enough beds at Mum and Dad’s house with Derek and Barbara staying. Oli and I took Dylan back to their house in time for his tea and then put him to bed in the travel cot. He fell asleep almost instantly as I think he was so excited about the change of scenery today and all the different people he had to play with. Katie and Paul were kind enough to babysit for us for the evening so that we could go back to the hospice for another few hours.
I got the feeling that Mum wouldn’t last too much longer as she hasn’t eaten anything today and only sucked a small amount of water from a sponge earlier in the day. She is now too weak to change position herself, so the nurses had been coming in at several hour intervals throughout the day to move her from side to side. They always gave her an injection of morphine before they did this so as not to cause her any pain. It is so sad to watch her deteriorate like this but I know the nurses are doing all they can to keep her as comfortable and pain-free as possible. Dad stayed the night with Mum tonight and attempted to get some sleep in the recliner chair in the room.
Saturday 16th March 2013
David, Oli, Dylan and I had breakfast with Katie & Paul this morning before departing for the hospice. Katie and Paul were again kind enough to babysit Dylan for us so that we could just concentrate on being there for Mum. We met Dad, Derek and Barbara when we got there.
A significant change was obvious this morning and Dad immediately seemed doubtful that Mum would last another day or night. It was hard to disagree with him. Mum’s breathing seemed to have become more irregular with pauses between breaths, some longer than others. She was still fast asleep and didn’t acknowledge us at all. We all said “Good Morning” to her and told her who was in the room with her. We wanted her to know that she was surrounded by the people she loves. We held her hands, gently rubbed her arms and stroked her hair from time to time. I hope it was a comfort to her, and that we weren’t hugely irritating her. I like to think that she enjoyed hearing our voices and listening to our conversations.
As the day progressed there was no significant change. We were told by the doctor that some people can go downhill quite rapidly, as Mum seemed to have done over the last couple of days and then plateau for quite some time before any more deterioration becomes obvious. Mum was stable for the entire day and we were told that even though her breathing had changed, it was surprisingly still regular and her pulse was very strong. The rest of her body is failing, but her heart still appears to be very strong and healthy.
My sister-in-law Cat came to collect Dylan at around 4.30pm and took him back to St. Albans to stay with her and Oli’s brother Tim for the night. We didn’t want to have to rely on Katie and Paul for 24 hour childcare, although they said he was an absolute delight. I’m so thankful to have such loving and supportive family who have been willing to step in and do anything helpful to ease our pain. I took Dylan into Mum’s room briefly to say goodbye to her. It was too awkward to get him to kiss her goodbye, but the last thing he said was “BYE, BYE GRANNY!” and I really hope that she heard him. I will never forget the feeling of knowing that my precious little boy will never see or speak to his Granny ever again.
Oli and Uncle Derek decided to stay the night with Mum as none of us wanted her to be alone in her final moments. They slept on chairs in the room with her and barely left her side, unless the nurses came in to top up her drugs and change her position. I gained huge respect for Oli tonight, as it became apparent to me how much he absolutely loves my Mum with all his heart and would do anything for her, just like me.
Sunday 17th March 2013
David and I arrived at the hospice early this morning as the road was closing for the Reading Half Marathon and we wouldn’t have access between 9am and 12noon. Again, Mum didn’t seem to be aware that we had arrived. She was totally unresponsive and in a very deep sleep. It saddens me to think that she is now too weak to adjust her position, hold a hand, scratch her nose or brush a stray hair away from her face. She has lost her gag reflex and is no longer be able to cough or clear her throat. She is completely helpless.
The nurses came to wash Mum and change her position shortly after 10am and it was after this that things seemed to have changed drastically. The nurses informed us that they had discovered lots of bleeding and this could indicate that Mum had started to bleed internally. Dr Talbot had previously informed me that Mum could possibly experience a large intestinal bleed. This could be a good thing as it would speed things up and Mum would be totally unaware of it. I didn’t know whether to be upset or relieved.
The nurses came back to check Mum exactly one hour later and discovered yet more bleeding. We were told that this could mean we were likely to lose her today. Now, when I look at Mum I am ready for her to go. Barbara and I spent some alone time with her and I told her that it was OK for her to go now. I have read that sometimes people need permission to leave their loved ones, although we did give this to her a long time ago. I wanted to reassure her that I was OK with it and I really believed that she would soon give in and her suffering would be over.
Mum experienced no further bleeding throughout the day and her condition was again stable, with a very strong pulse. Oli decided he needed to stay another night and he set up camp in the room with David for the night. I went home to Katie and Paul’s as I was exhausted and knew that Mum would want me to get enough rest for baby number two. I said goodbye to Mum, kissed her on the forehead and told her that I loved her before leaving on my own for the night.
I cried like I have never cried before on the way home. I cried so much I thought I was going to be sick. I was a total mess when I arrived at Katie and Paul’s and broke down in Katie’s arms, telling her that I can’t cope anymore and can’t face another day of the same. This has been day 5 in the hospice for me and I just can’t comprehend how Mum is still hanging on. We know she gave up the fight a long time ago, so I can’t understand why she is fighting it now.
Monday 18th March 2013
Today is Day 6 of the bedside vigil. Before I left Katie and Paul’s, I ‘Googled’ how long the human body can survive without water and the search results seemed to suggest anywhere between 3 and 5 days, sometimes up to a week in exceptional circumstances. This will be day 4 for Mum.
Mum had very obviously deteriorated overnight last night. Her breathing was very different today, much more shallow and laboured. David described it as almost mechanical breathing. The nurses acknowledged the change and seemed to think she was one step closer to the end. I didn’t let myself believe that today would be the day, because no matter what we are told it seems that Mum just goes on and on. I really hope today is the day because I can’t face another day in this place.
My sister-in-law Keri arrived at lunchtime armed with a large vat of creamy pasta for everyone. It was so nice to have a hot meal at lunchtime instead of the sandwiches we have become used to over the last 5 days. Mae had drawn Mum a picture of a love heart which said “Please get better!” David and Keri were visibly upset and a bit wobbly when they pinned it to Mum’s notice board alongside her other Grandchildren’s creations. I was glad that David was able to have his wife with him for support, as Oli hasn't left my side for the last four days.
The doctor saw Mum this afternoon and said to us that there was a significant change in Mum’s breathing and that she now feels we have really entered the last 24 hours. I cried when she said this as I had really hoped that it would only be hours away. The thought of another 24 hours in this place seems too much to bear. I just want her suffering to come to an end. I can only compare it to giving birth – you have no idea how long it is going to take, how painful it is going to be, you know it’s going to happen and you have to get through it, but there is no text book answer as to what it’s going to be like. The only difference is that you don’t get a lovely a present at the end of it.
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