March – May 2010 – Heartbreak For The Family - New Equipment Needed – A Family Wedding & More London Shows

March started as a quieter month except for the relentless progress. It’s interesting but there’s almost a double whammy when you move to new equipment. The wheelchair was now being used every time we went out, which meant Carol wasn’t walking around as much, which meant her legs became weaker more quickly! Similarly with the Litewriter – a communication aid that helped Carol to be understood, which meant she stopped trying to talk so much, which meant the throat became weaker……and on it goes.

It was time for more forward planning and I was looking towards the time when moving Carol around the house would become more difficult so we had an assessment for a powered wheelchair. We were also supplied with a moving belt and turntable, two of the simplest pieces of equipment I’d ever seen but they became priceless over the next few months. The belt wrapped around Carol’s torso and had loops for me to grip so that I could lift and hold Carol up. The turntable went under Carol’s feet so as she stood up I could turn her around as required – moving from wheelchair to chair / car seat / bed and vice versa – they went everywhere with us – I repeat priceless! Next to arrive was a commode, a just in case measure at that time for when Carol couldn’t use the toilet anymore. That was useful for wheeling Carol from the bedroom to the bathroom every day – remember we’re still upstairs at this point and Carol can still manage stairs taking them one at a time.

I planned another London trip for 19^th / 20^th March – back to the Novotel and back to see the Boys!! (That’s 3 so far if you’ve been keeping count). We took Bec with us this time as she’d not seen a London show before and we packed the weekend with a couple more – I was also now organised enough to ensure we had access seats for everything – it’s so much easier believe me. “Sister Act” was first up, which is one of Bec’s favourite films – it was great fun and there was Sheila Hancock too! Bec opened a bag of sweets all down the neck and back of the lady sat in front of her – thankfully she had a sense of humour! This was followed up by “Wicked” which I have to say we all really enjoyed – “The untold story of the witches of Oz” is very popular and it’s easy to see why. All of these shows are highly recommended if you’re looking for something to go and see.

At the end of March Annie was taken into hospital and it didn’t look good. Paul had been keeping us informed over the last few weeks and the deterioration had been swift. I still can’t help thinking that, from the very moment we had discussed Carol’s illness in detail with Annie, and explained there was no possibility of Carol recovering, there was a distinct change in her demeanour. She’d stopped going out, which was unheard of and had withdrawn into herself. There had been a number of minor health problems in recent years, and Annie was well into her 80’s by this point, but the change we saw in her when we got up to the hospital was startling. The doctors confirmed that there was now cancer, and Annie had a DNR request so it was just a matter of time. We spent 6 days sat by her hospital bed, 6 very draining days on an already weakened Carol - but thankfully Carol, Paul and I were with Annie as she passed away on 7^th April. The end was very peaceful but Carol was shattered, both mentally and physically, and as moving her around suddenly became even more difficult I realised those 6 days had also cost Carol a great deal in further loss of muscle strength.

I switched into the organiser role and made the calls to set-up the funeral. I also helped Paul to sort out all of Annie’s personal affects and talked him through what needed to be done with policies, finances and the like. Annie’s funeral was delayed until 22^nd April so Paul came back home with us while we waited for that date – Carol and Paul just needed to be together.

During those 2 weeks we arranged another OT assessment – this one was to discuss having a ramp fitted to the front of the house, as Carol’s powered wheelchair was due any day now and we couldn’t get it in and out without a ramp. That was a very smooth process and the ramp would be fitted before the end of the month.

We travelled back up for Annie’s funeral and as you would expect it was a very emotional day, Carol and Paul asked me to read the eulogy which they had written. It was also the day when Carol’s extended family got their first real glimpse of just how far she had progressed – and some of those conversations were even more emotional. Carol decided to stay up there with the family while I came home with the children – the next time we’d be together would be at Jim and Samm’s wedding in Doncaster!

May 1^st 2010 was the big day and me, Kyle and Bec had an early start from Cornwall. I'd been to a concert with Kyle in Penzance the night before so that was why we hadn't travelled up before. The plan was to meet at the venue for the wedding and it was going to be a good day. Just a small family gathering, the low key affair that Jim and Samm had wanted and everything went well. It really was a lovely day and it was hard to believe that our little boy was now all grown up. I’d not seen Carol for a few days so I was watching her very closely to see if anything had changed – that becomes the normal state of mind the longer you’re dealing with this disease, constantly looking for even the smallest change so you can react and deal with it. It might not suit everyone and makes it sound like I’m almost in a constant state of panic, looking for things that might not be there, but I must say it’s worked for me so far and it’s allowed us to keep one step ahead.

Doncaster is North just off the M1 – going South down the M1 you reach London so you can probably guess what diversion we took on the way home. Sunday matinee “Jersey Boys” - this time with Kyle and Bec – we were certainly doing our bit to spread the word!

Writing this down I realise now just what a busy period that actually was – the progression seemed to be accelarating, only minor changes but they were constantly occurring – and there would be even more to come over the next 2 months.