He is beginning to have to think about swallowing now. He tells me that he finds this disturbing. He is still eating, he can still swallow, he just has to think about it, the way he has to think about breathing and eating at the same time. For years he has been drinking through a straw and he already has a PEG in place. Bolus feeds are part of our daily routine and yet the news that his swallow reflex is beginning to be affected fills me with dread in a way that no other change has done so far.
He developed a cough on Tuesday. By the evening, Kate and I were exchanging worried glances. His cough reflex is not as good as it used to be. My head was filled with thoughts of ‘cough assist machines’ and ‘suction pumps’ but we don’t need those yet. Next day we decided to call the GP. Roch himself made the call, asking for an urgent appointment. He told the receptionist that he had motor neurone disease, had a cough and that this was beginning to affect his breathing. He was told that there were no appointments and to call back after 3pm. (Note: I have since spoken to the Practice Manager and they are taking this very seriously). At the time we decided that we could not wait and I made contact with our District Nursing Team. Once again, Community Matron Jo came to our rescue. A message was passed to her and she called me back. By lunchtime she was here to examine Roch (beginnings of a chest infection) and she had written a prescription for antibiotic suspension. I ran off to the chemist and he had his first dose within the hour. He has been feeling really lousy but today is much improved. I won’t lie to you, the experience was a bit scary and I think I’m right in saying he felt more secure with me around to look after him, so I took a couple of days off work. Truth is I wouldn’t have been happy anywhere else.
We are missing our Jenny, who has gone home to Australia for a few weeks. That’s right Jenny, no sooner have you left the country than he goes down with a chest infection. See? If there was any more proof that we needed you..! Jenny recently stayed over for a few nights while I visited my family in Dublin. She and Kate ably held the fort in my absence. My Girls Friday (and Thursday and Saturday and Sunday..!)
We have a new addition to the ventilator – a humidifier has been supplied. This is necessary because after a night on the machine, Roch’s nose had a tendency to bleed. Apparently the delicate membranes in his nostrils were being adversely affected by the cold air. Now the air is warm and another part of the bedtime routine is filling the humidifier with clean, cool boiled water and turning it on before he comes to bed.
In other developments, he is finding it very difficult to lower himself onto the toilet safely now and so we must use the hoist not just to raise him from a sitting position on the toilet, but to lower him onto the toilet also. Standing at the wash hand basin, leaning against it for stability, is a thing of the past and he has begun to wash his teeth sitting down in his recliner, spitting into a beaker. Well, the good news is, he can still spit.
We have been busy over the past few weeks, working with Dignity in Dying to help with their campaign for Assisted Dying in the UK. You will see more about this in later posts and hopefully I will be able to update you next week.
I know that I have been absent from these pages and this has been commented upon. I can only say in my defence that often, when my mind is full of MND (see 'cough assist machines' above for reference) I try to take refuge in writing. Sometimes the last thing I want to think about is our situation and so I try to lose myself in fiction. On a good writing day, an hour can go by without me even noticing – and not one MND thought to the fore. I find that when I’m working on a story, I am thinking about it a lot of the time, so as I’m doing the routine caring tasks, like preparing the medication, the syringes for the bolus feeds; or carrying out household jobs like emptying the dishwasher, chopping vegetables, I’ll be working out whether my story ‘works’, how to finish or maybe deciding I need to change something. First opportunity it’s back to the notebook to jot down an idea, and then I move on to the next task. It occupies my mind. In a good way.
Despite the recent changes in his condition Roch and I are still planning ahead. We would like to reassure everyone that we have no intention of giving up. Roch plans to buy a Season Ticket for Brentford. Come on The Bees! We’ve decided not to do the whole journey thing to Ireland this year, as it ends up not really being much of a holiday, although lovely to see everybody! (Hint: You can come to see us.) Instead, I have booked a holiday for the four of us in Dorset for the first week in September. Many thanks to Mandy Garnett for her recommendation! It sounds just the ticket, and I look forward to some family time in a beautiful part of the world (Thomas Hardy country). We will stay in one of three specially adapted cottages, with all the equipment we need, a treatment room and splash pool. You can even order organic, pre-cooked frozen meals in advance. I ask you, what more can we ask?
Well, we could ask for Arsenal to win the FA Cup Final, I suppose. For God’s Sake, bring home some Silver can’t you lads, for Roch’s sake!
Off to watch the match with him now…