The Waiting Game

Thursday 14^th March 2013

Today Dad and I instantly knew that Mum was a lot worse than she had been yesterday when we saw her.  She is looking a lot more yellow, more exhausted and just generally very poorly.  When I look at her now I already think she looks like a corpse.  She is so thin and frail and her skin is starting to look really waxy.  It’s so hard to see her deteriorating like this and it almost seems to have happened overnight.

The hallucinations were very evident this morning and for a short while Mum didn’t know who I was and kept saying, “Where is Heather?  Heather promised me she would be here and she is not here.  I don’t understand where she is.”  I kept telling her that I was here with her, holding her hand, but she didn’t believe me and said that I was lying to her and trying to mess with her mind.  I found that very difficult, although later in the day she did know who I was and talked with me.

Dr Talbot came to visit Mum on the morning Ward round and she spent a good while chatting with Mum, holding her hand, stroking her hair and telling her what to expect in the days to come.  She has a lovely nature and treats each patient as a person.  She suggested that it is a good idea to set up a syringe driver which will give Mum all her medications intravenously as Mum doesn’t have the strength to swallow tablets anymore.  This will cause her to become increasingly sleepy.  She said that Mum is also likely to become a lot more frightened in the days to come and that when this happens they will increase her medication to keep her calm.  She asked Mum if she trusted to the doctors and nurses to do a good job of looking after her, to which Mum replied that she absolutely trusted them.  Dr Talbot explained to Mum that she wouldn’t be coming home again now and that she would be here until the end.  This would allow Dad, David and I to be a loving family to Mum and not nurses or carers in the final days.  Mum cried. 

Chris and Julie Justice came to visit Mum shortly after 11am.  Chris used to be the pastor at Mum and Dad’s church and has been asked to do Mum’s funeral.  She has been very organised and met with Chris in the past to tell him exactly what she wants.  She told him that she had written both David and I a letter for when she is gone and he reassured her that she had also given him his list of instructions.  I think Chris and Julie knew that she was very close to the end; they both hugged me and told me how hard it is.  Mum was able to have a relatively sensible conversation with them, although she did say a few things which didn’t make much sense, but I think she appreciated seeing them and I was glad that they had visited.

Shortly after their visit Mum asked me to take her to the toilet as she was experiencing another awful night sweat which comes as part of the territory with cancer.  She wanted me to change her night dress as it was soaked through.  I find it really hard to help her in this way as I didn’t think I would be doing this until she was at least 80 years old.  I helped her onto the toilet which was a struggle and changed her nightie, but as soon as she had finished and managed to stand up the colostomy bag unexpectedly exploded.  It was absolutely awful!  I wanted to help her, but I didn’t have the first clue what to do and poor Mum could hardly hold herself up, but I knew she couldn’t sit down or move as she was absolutely covered.  We called for help and I tried to stay with her for as long as I could, rubbing her back and reassuring her that it was going to be OK.  However, before long my nausea set in and I starting retching and heaving and had to exit the bathroom before I threw up all over the place.  The nurses took a while to arrive but when they did, they did a brilliant job of looking after Mum.  I felt terrible that I was unable to help her when she was so vulnerable and having to go through such a humiliating experience.  She hates the colostomy bag, struggles to cope with it and incidents like this make it one hundred times worse!

Mum’s brother and sister, Derek and Barbara flew over from Northern Ireland at lunchtime and arrived at the hospice shortly after 3.30pm.  I think they were very shocked at the enormous change in Mum since they last saw her.  Mum recognised them as soon as they walked in and was very pleased to see them.  She was able to have brief conversations with them, but I think was just content to have them in her presence.  I am glad they are here, as now Mum is almost surrounded by the closest people to her and it would be the perfect time for her to go.  David arrives tomorrow afternoon and like me will stay indefinitely until this is all over.

Later in the evening Dr Talbot came back to have a chat with me alone which I appreciated.  I asked her for her honest opinion in terms of how long this process might now take.  She said she honestly believed it would be days and with the best possible intention hoped that Mum would not still be here on Monday.  We all want it to happen quickly now as the suffering has gone on for far too long.  She understands that I want to stay and be with Mum, but she also explained that I need to look after myself, my husband, my son and my unborn baby and that my priorities are totally torn at the minute.  She explained that the grief will probably hit me more after I have given birth and my Mum is not around to meet the baby or help me.  I talked to her about how Mum and Dad had arrived at the Royal Surrey only 3 hours after Dylan was born complete with helium balloon, cuddly horse and a football!  This time I know that Mum will not be there and I just cried for her and what she is going to miss.  Dr Talbot gave me a big cuddle and held my hand and was incredibly kind and compassionate towards me.  I am so grateful that she is looking after my Mum.  She spent almost an hour with me and I felt so much better for the chat.

We left the hospice at about 6.30pm tonight and I felt absolutely physically exhausted with a banging headache and puffy, sore eyes from crying so much.  I decided not to go back to the hospice after dinner and I just put my PJ’s on and had some alone time, while Dad took Derek and Barbara back for another hour before bedtime.  I have experienced an enormously sad, rough day and expect more like it in the days to come.