Surprisingly there was only one show during this period – a weekend trip up to see the family included “Peter Kay” at the MEN Arena – we took Paul along for a night out and made our way in on the Metrolink with Carol in the wheelchair. We’ve been fans for a long time and it was great to see him live – but even now I’m still not sure about Rick Astley as the support act!!
On the back of Lou’s visit we started talking to our OT about options for the future. This included looking at additional equipment and also exploring adaptations to our house that might make Carol’s life easier as the disease progressed. I’ve looked back on these a few times over the last year, with everything we know now, but can’t honestly say there is anything we’d have done differently. Our OT (Angela) was instrumental in driving these ideas and she did a lot of work looking into different options for us. I’m sure I frustrated her with my constant dismissals, it’s just that neither of us really wanted the major restructuring in the house that would have been required. There was no possibility of our house fitting a through floor lift so the two main ideas that were measured and quoted for were changes to bathroom facilities.
In fairness to Angela at this point I was already struggling to get Carol into our bathroom shower, even though we’d had a larger stall fitted just after Carol’s diagnosis. We’d tried various different shower chairs over a period of weeks and there didn’t seem to be an ideal fit with any of them – too wide / not supportive enough / too slippy. By this time I’d resorted to manhandling the most suitable shower chair into the stall, wheeling Carol on the commode as close as I could get her and then somehow using the belt and turntable to move Carol through the shower doors and onto the shower chair – health & safety / manual handling…..don’t even go there!
The first plan that was presented involved turning our upstairs bathroom into a wet-room – an idea I really didn’t like. This was quickly followed by the plan to install an all in one shower / toilet / washbasin unit in the downstairs bedroom – this was a cubicle type fitting, similar to the kind of thing you may find in a caravan. Anyway I disliked that idea even more, especially when we looked at the water drainage options in relation to our sewer system –they were not good! It wasn’t just about the money – and yes they were expensive – it was the thought of the changes themselves and the simple fact that neither of us really wanted them.
What we did go for in June was a stairlift – and what a great relief that would be. We had to face the fact that Carol’s legs were no longer capable of climbing stairs safely. Over the last few weeks Carol had gone from the one step at a time method, to shuffling up and down on her bottom, to eventually being carried up and down by me and the boys – this was not sustainable, and certainly not good for any of us. Angela organised the stairlift assessment and we had the choice of buying a brand new one (too expensive) or renting a reconditioned one (yes please). The local branch of MNDA actually funded this for us, which was greatly appreciated, and we ended up with a basic stairlift fitted for £500 with a £10 per month rental charge – and that was just fine. Everybody in the house had a go, (as I’m sure you would expect!) but in all seriousness this took a lot of the pressure off the family and the care team and made Carol’s life a lot easier.
I should probably just update Carol’s general health and condition at that time, testing my memory and taking some reminders from a number of assessment letters and meetings we had over the period. You’ve already been reading about the progression of the disease in earlier posts - this is where Carol was in June 2010:
· Carol’s voice was almost unrecognisable and the words she tried to form could not be understood to any real degree.
· Carol was still eating but the foods had become softer and more easily chewed / swallowed and drinks continued to be thickened. There were occasional coughing fits, brought on by eating and drinking but these did not cause any major distress. We discussed having a PEG fitted again but no decisions were made.
· Carol’s ability to swallow was weakening and there was now a build-up of saliva in the throat that Carol was having difficulty clearing. It wasn’t that Carol was producing any more than usual, it was the fact that the general muscle weakness led to swallowing issues which meant that keeping the throat clear took a real effort. This particular problem would plague Carol for the best part of the next year before a solution was found – and throughout that time Carol would try numerous medications without any success – and even botox (more on that later) - she would even go down the route of trying additional medications where a dry mouth was a possible side-effect. At times the problem was so bad that Carol would need to wear a bib and we went through kitchen roll at a rate of knots.
· Carol’s legs were now too weak to walk or stand unaided but she was still able to support herself with help into a standing position for transfers between seats using the belt and turntable.
· Carol’s upper body was now showing severe weakness in the right arm and hand but the left hand still worked pretty well. This was good because it was Carol’s driving and typing hand, and Carol could still type well using both the Litewriter and her Iphone.
· Carol’s neck muscles had become much weaker over the last couple of months and she was now wearing a support collar throughout the day.
It sounds quite scary reading this list back now but in reality this is how far Carol had progressed in less than a year – and because the physical changes were now so visible, affecting such key areas of the body, it seemed as if the progress of the last 5 months had been at a sprint.
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