Carol's Final Days

I'd already started to write the next blog post before 29th - but obviously wasn't planning for what came next. I think it's important for Carol's journey to follow everything through to that day and beyond. So this is what happened over those last days.

A couple of weeks previously I'd spoken to Liz from the McMillan team about the fact that Carol was getting very tired, and I was wondering if we were moving on another stage. Liz had said to me that the next thing to look for would be Carol starting to sleep more than she was awake – she also said that when it happened it would probably be quick (how very true that actually turned out to be).

It started to happen just before Carol’s birthday, with Carol looking more and more tired (I thought it was all down to the sleeping problems) and then escalated to the point where Carol was in bed and could barely keep her eyes open for more than a few minutes at a time.

Carol did say that she felt we were nearing the end - but she felt it would be at least a couple more weeks rather than just a few days. Carol made a very important decision at this point – she didn’t want to go into hospital at all and wanted to stay at home until the end. I’ve got to say I was relieved to hear this as I felt it would mean Carol would be able to control things herself (again with hindsight that’s exactly what Carol did). Carol also told me not to tell anyone what was going on – she didn’t want everybody worrying or coming down and sitting around staring at her.

December 24^th - really the first day when Carol spent more time in bed than sat up in the wheelchair. An uneventful day overall with Carol just seeming to be catching up on the sleep she'd been missing so much. We watched a couple of films in the bedroom and Carol dozed most of the day.

December 25^th - in many ways a repeat of the 24th and Carol spent a large part of the day in bed, but she did get up later on when Jim, Samm and baby came round. There were also a couple of things worthy of note. This was the day I finally realised what was going on with the sleeping problems. It was so obvious that when it came to me I felt such a fool for not seeing it before. I sat with Carol and asked her for an honest answer to the question "Are you forcing yourself to stay awake because you're scared of not waking up?" - and the very obvious answer was "yes". Suddenly it all made sense, despite all our attempts with so many different medications that didn't seem to work, it all came down to the fact that Carol's willpower was stronger - quite amazing really. What also happened was a change in urine output, with Carol suddenly passing very little despite the regular daily fluid intake being maintained. On Christmas Day we had the catheter changed, as it appeared to be blocked, but there was more to this than we thought at the time.

December 26^th - more like a regular day with Carol up in the chair and watching TV.

December 27^th - Carol was up in the morning watching TV but had really bad palpitations early in the afternoon and she also had severe pain in her diaphragm. The nurses were fortunately visiting at the time, sorting out the syringe driver, so we discussed using one of those “just in case” medications to calm Carol down - midazolam. Carol agreed to this being used but also asked for the paramedics to be called to make sure nothing else was going on. Fortunately the medication worked almost immediately so by the time the paramedics arrived Carol was calm and more relaxed – but the pain was still there. It was at this point that Carol admitted she’d been in pain at times in the past but had not said anything to me. Forgetting how I felt hearing that at the time I really believe now that Carol needed to deal with the pain herself as it kept her focused on feeling something. This admission led to a further discussion about diamorphine, which was also in our “just in case” box at home. Carol refused this as she was concerned about the effect it could have on her breathing. The paramedics left having confirmed that Carol didn’t want to go into hospital. The urine output problem had continued so the nurses changed the catheter again and a GP visit was arranged for the following day. Carol stayed in bed for a while but got up during the evening.

December 28^th – Carol didn’t seem too bad today and actually decided to have the midazolam added to her syringe driver for constant delivery and symptom relief. This would keep Carol more calm and relaxed and alleviate any anxiety she may be feeling – it would hopefully mean the end of the palpitations. The GP came and assessed Carol and she seemed ok, apart from appearing to be bloated due to water retention. The GP advised we should change the catheter again, and then use a dose of furosemide. This actually worked very well and Carol was more comfortable almost immediately as things started to move.

So despite Carol having been through a rough few days everything seemed to be under control, and even though we could probably now look at a date in the not too distant future there was absolutely no indication that date would be tomorrow.