It’s time I updated you. Roch is once more gainfully employed, albeit on a part time basis. Back in January, he was selected by the National Institute for Health and Care Excellence as a member of the Guideline Development Group (GDG) for Motor Neurone Disease. He was recruited following open advertising and he is very pleased with his appointment. A GDG is a group of about 15 healthcare professionals, researchers and patients and carers, convened to develop a clinical guideline on a particular topic. Proceedings, discussions and findings are confidential so we will have to wait until the resultant full clinical guideline is published to know more.
So far, he has attended one full meeting in Central London and one day of training. The training day took place after the meeting so that wasn’t particularly helpful, but you know Roch, he takes all these things in his stride (so to speak). He gets paid for his work and time, and also receives expenses, so he’s feeling “useful” again. His word, not mine.
There are mountains of paperwork and he goes through all of this on his i-Pad and laptop, but it’s a lot of work. On meeting days he gets up at 6.30am. Jenny stays over the night before and is up bright and early to start Roch’s personal preparation regime. For the first meeting, Jenny and Kate accompanied him, as he needs two helpers now to assist when he’s out. Yesterday, for the training day, Jenny and David went along.
Roch had two major concerns regarding the NICE Days. One was whether the day would prove too much in terms of physical exertion. Would he be able to do it? He has proved that he can.
The second concerned his obsession with being, as he calls it, “handcuffed to the toilet”. Unable to predict when he may need to empty his bowels and subject to the occasional urgent bowel movement, how could he contemplate a whole day out in Central London? The old way involved taking two Imodium before leaving, followed by a couple of days uncomfortable constipation before the system cleared again. Following discussion and consultation with different health care professionals, one of whom having pointed out that this method of control could actually impede his breathing (pressure on the already weakened diaphragm), Roch decided to consult the experts again. Back we went to the Continence Clinic at Teddington Hospital, where we saw the wonderful Tizzy, Continence Nurse, who came up with a plan. I sat there in Tizzy’s office, listening to talk of rectal irrigation and it slowly dawned on me that this would be another nursing task falling within my remit as carer. I admit to feeling pretty overwhelmed at that point. It’s not what you envisage when you fall in love or when you take your marriage vows (that stuff about ‘in sickness and in health’ – it’s not very specific, maybe they should work on that?) I’m sure the last thing Roch wanted to hear was a plan to have something regularly shoved up his rectum so it’s not that I’m without sympathy for the patient. But I’d just got used to bolus feeding so I felt a bit sorry for myself. However, we have been amazed at how effective the new rectal irrigation regime is and I have to say, I’m feeling pretty proud of myself. Someday I intend to write about what MND does to a relationship, but that time has not yet come.
The new system is called Qufora, and it’s a very simple idea. It’s basically about training the bowel to empty at more or less the same time every day. Warm water is sent up the rectum to irrigate and empty the system at the same time every day for a couple of weeks, then perhaps three times a week, until the bowel is trained to know what is expected of it. Useful as it is for us now, how much more useful when mobility is a thing of the past and bowel evacuation itself (not just predictable evacuation) becomes a problem? Results have been most satisfactory. It’s added about twenty minutes on to the morning ablution time, but that’s not bad. It means Roch can be confident of a clear-out before he leaves the house for his NICE meeting – or for any other reason. So far, the Qufora system is working well, although he doesn’t feel confident enough yet to eat when he’s out. Jenny brings along some Fortisip feeds and the flush equipment for the bolus feeding. Roch gets a separate room for his exclusive use at the NICE venues, which is extremely helpful.
The morning ritual thus begins with removal of the ventilator mask, then a pee, next the essential espresso followed by a PEG flush and a feed. After that it’s the tablets. Proceeding into the wet room, the hoist is set in place and Roch is raised into the opitimum position over the toilet bowl for rectal irrigation! Lowered again, he is left to enjoy at least a modicum of privacy. The evacuation is followed by his shower and stoma site inspection, possibly some extra cleaning necessary there – but not always. If it’s Twist and Shout day, then that takes place, if not, we proceed with towelling and dressing.
Jenny has seen to the ritual for the two NICE days, allowing me to simply wish them well, before taking myself off to the futon upstairs for further snoozing. That’s the deal. If I’m not working, NICE days are my days off. Yesterday, I spent most of the day doing nothing. For the first time in – I can’t remember when – I slept late, had a bath, watched TV and went for a walk. When I got back I prepared dinner at my leisure and waited for the working man to return.
I could get used to it.