August – October 2011 – Plateau Continues – A Couple Of Shows! – Tired

This period was probably the most settled of any so far. Carol had certainly reached a point where her general health was well controlled. We had the right medications and a care package in place around Carol that covered all her needs.

We’d met with Amy to discuss Carol’s Advanced Directive and had made changes to the instructions around breathing support. Amy had outlined the various options and Carol remained adamant that non-invasive support was all she would accept. This was written very clearly into Carol’s notes so there would be no misunderstandings should the time ever come.

We also talked with Liz (Mcmillan Nurse) to put a “just in case” scenario together should Carol become ill again. Carol was worried about possibly having to go back into Treliske, if there was another chest infection, and wanted us to do all we could to avoid this. Liz advised that it may be possible to introduce Mcmillan support to treat Carol at home should the need arise, which was good to hear. Additionally there were 2 specific medications prescribed for a “just in case” situation and these are now in the house and available for nurses / paramedics to use immediately should Carol become distressed – an early intervention to calm Carol down before any treatment would begin.

With Carol’s reduced mobility we’d stopped attending any kinds of outpatient appointments and Carol was very much housebound now. When Carol’s hands stopped working we’d had to move the wheelchair control onto the handle behind the seat so it could be driven by somebody else – it took some getting used to and we also had HSC limit the speed to stop us crashing into walls and things. Although Carol is comfortable the majority of the time in this chair her position needs to be changed throughout the day. When the healthcare assistants visit they hoist Carol up onto the bed for a few minutes rest or just into the air for a backside massage (and the happy slapper comment still makes them all laugh today!) We have to shuffle Carol or move her shoulders, stretch her legs and move her feet at various times – even in the comfiest seat there’s no fun in being sat in the same position all day. Carol’s general body weakness is another reason why she doesn’t like to go outside much these days. The wheelchair is good but Carol’s body now moves around in it constantly when it’s being driven any distance at any speed above 1, she just doesn’t have the body strength or head control to hold her position stable.

The one thing I started to notice over the last few weeks was Carol just seeming to become more and more tired – physically and mentally tired. Sleeping at night wasn’t brilliant anyway, and we’d moved to PEG feeding during the day to help this, but by the time early evening came around Carol was nodding off. At weekends, when I’m with her all day and the house is generally quiet Carol goes back to bed for an hour or so in the afternoon – but she doesn’t do this during the week as Samm and Veronica are here looking after her and the house is always busy. The impact of this was visible as we got into the evening but I felt the level of tiredness Carol was displaying was more than that. I started asking questions about progression again – is this just the next stage?

You see it’s been pretty straightforward to measure progress so far – parts of the body stopped working and that was the disease progressing. But once all of those areas had stopped working it became difficult to monitor changes in Carol’s condition. Yes, you can see muscle definition and you can watch Carol’s weight, but physical changes seem minimal to the eye. You start to wonder just what the disease is doing to Carol now – and what’s going to happen next.

Then you turn back to the positives and that mantra comes in useful again.

Carol was invited back into Marie Therese House but politely declined this time - the team understood why Carol opted to stay at home and there's an open offer of a room should Carol change her mind.

At the end of September we celebrated Rebecca's 18th birthday. It was a quiet celebration for us but Rebecca went out with her friends for the evening - Carol's beaming smile that day defied the disease and showed her strength and inspiration to us all again. 

In October we got to see a couple of shows in Truro – our taxi driver helped us out and we went to see “Buddy” with Kyle, Sue, Tom & Jo. Now this is a show that we’d seen many times back in the 90’s, before we moved down, and it was always a real favourite. You just can’t go wrong with that brilliant music and the story is told really well.

A couple of weeks later I took Carol to see “Fascinating Aida” – you must have seen the “cheap flights” video on YouTube – it’s a classic! Anyway these 3 ladies are quite superb, very cleverly written and performed songs that had the whole place in hysterics – I’ve not heard a crowd laugh that loud for a long time and Carol really enjoyed herself again.

So from what I set out to do a few weeks ago I’ve finally reached the last of the historical posts. This brings Carol up to date to the end of October 2011, so from now on I can post in real time. We’ll sit down and read all of these over the next few days and probably start to see things I’ve missed or want to change – but I’ll resist that and be happy that what I've written is a pretty accurate record of the journey so far.

My beautiful wife is quite simply the most wonderful lady in the world – to me she’s my much better half - I love her with all my heart and owe her everything. I’ve tried to be the best I can be for Carol and the whole family throughout this journey – I’ve got a lot of things wrong but I’ve also got a lot of things right. There’s no instruction manual you can read to help you out with MND – you’ve just got to get on with it the best you can…..and I think we’ve done that.