In New York

In New York

Friday, 22 July 2016

The Monkey Makes Some Progress

Well, back down to earth and we have entered another phase in the MND journey. Pump feeding in earnest. For some time now there has been a concern that Roch is not getting enough nutrition but he was holding out against pump feeding (being attached to a device which pumps liquid nutrition continuously through the feeding tube in his stomach). His reluctance was understandable. Some months back, we tried it during the day at home and he felt it tied him to the house. In practical terms, it's possible to attach him to the pump and bring it with us when we leave the house but I think we both felt too anxious to do that and so we have ended up pump feeding at night. 

In fact, it's working out really well. He is definitely putting on weight and now we don't have to worry so much about whether he is getting enough nutrition during the day. He has one meal in the daytime, and he can decide to eat whatever he wants. It's still tiring for him to eat but he feels it's worth it - he can still eat and taste the food.
It means he has to have his meal earlier, as it's not a good idea to pump feed on a full stomach - but that's okay, we have just adjusted the routine. 

There have been other changes to the routine. We used to remove the ventilator mask in the morning, to give him a few hours sleep without the mask, but now he needs to keep it on for longer.  I won't lie, it was a bit of a relief, as it meant we wouldn't have to get up early on days off work, to take his mask off. But now of course, every morning, the feeding tube has to be detached from the pump and flushed through (before and after each feed) with 150ml cool, boiled water. One task is replaced by another. It's the reality of life with MND. 

I can't help feeling rather proud of myself for mastering all this pump feeding stuff. We did get training. In fact we had a rather supercilious and annoying Nutricia nurse who came to train us but I still felt quite intimidated by the whole business. I think his Carers would agree - but we've all learned how to do it and even done our fair share of troubleshooting...

The monthly delivery from Nutricia Homeward is growing (syringes, Fortisip drinks, Nutrison Protein feed for the pump). The bedroom downstairs is beginning to resemble Del Boy's flat...

We were worried that having 800ml of liquid feed overnight (soon to be 1,000ml), he would need the toilet more often at night time, but this hasn't proved the case - maybe one extra pee? Once or twice a visit to the loo has been necessary, but I think that's been when he's eaten later in the day and we've adjusted the timetable accordingly. The trusty urinal bottle is our friend at night, as he doesn't have to leave his bed. 

Another significant change for Roch is that he can no longer turn in bed. He was managing (with difficulty) to turn himself once when settling himself to sleep, but he can't do that anymore. So in general now I settle to sleep on the futon beside his bed (forward thinking - thank you Eoin Maher for getting it downstairs for me back in September) and when he needs to be turned I rise sleepily to assist. When the night time Carer is here (for the nights before my working days), they sleep on the sofa bed in the kitchen and perform the same task when called). 

Settling to sleep downstairs with him has been good for us. After his bedtime routine is complete (from chair to bed, attached to ventilator and pump, dressings on and creams applied etc.) and I am ready for bed, I plug us into his reading device and we lie beside each other, listening to a book together. It's an opportunity to talk about the day and how we are feeling, discuss plans and generally feel like a regular married couple for a time. Lately, because his ears have been blocked (wax build up? Ventilator use - have other users of Bi-pap machine experienced this?) conversation has been minimal, but just being there is nice. 

I usually fall asleep listening to the book and once awake for the turning and he is settled again, I take myself off to my bed upstairs, to enjoy uninterrupted repose until it's time to detach him from the pump in the morning, unless the relentless beeping of the alarm heralds a visit downstairs. But this rarely happens these days. It may change. I suspect I may find myself spending more time on the futon in future. My back will not be happy. 

Texting is becoming difficult for him, as no doubt some of you will have noticed. It's funny when I remember that when we first met and for many years after, this medium of communication didn't even exist. Now we rely heavily on it so I am beginning to really miss being able to text him directly. I can text whichever Carer is on duty for the practical things and they can confer with him and get back to me - but see how our personal communication becomes eroded? I can see how a distance could gradually form between us. This is why it's a good thing to keep one or two days a week, when it's just us and when I am the one here to look after him. I can't do it every day and I need my time but if I never do it? That doesn't work for me. 

The hot weather is a challenge for him. There's no doubt the bad air quality affects his breathing. The ankles tend to swell so it's feet up as much as possible and cold compresses at night. The trusty fan has been retrieved from the attic and is proving invaluable. We've had it for at least 14 years but as it only comes out for a few days every year (if we're lucky) it's lasting forever! However, the good weather has more than a few advantages, and sitting in the garden together enjoying the sunshine and having a cosy chat is definitely one of them. No texting required.
Clear blue Skies - July 2016

Wednesday, 20 July 2016

Graduation 2016

Three years ago Kate graduated from Exeter University. It was a hot July day and even then it was a challenge to make sure Roch made it but we did it and it was a memorable day. There we were, as I recall, sipping champagne and eating cupcakes (very Exeter), surrounded by blue balloons, when Roch turned to me with tears in his eyes.
"I won't live to see Tom graduate," he said. Feeling a bit like Samwise Gamgee encouraging Frodo (for all you LOTR fans), I duly replied,
"You never know, Roch, you never know, it may happen yet."

And it has...

On a hot July day last week, we watched our son graduate from Southampton University. Best moment of the day was when we turned and saw him emerge having been robed in preparation for the ceremony. The sudden sight of him with mortar board and robes took my breath away. Maybe that was my proudest moment.
Tom had been active in making sure all was prepared for his father's comfort. The wheelchair space in the lecture theatre was by an exit, but with a great view of the stage. Nearby was a room we could use if Roch needed the ventilator or a rest. He didn't need it during the ceremony, but later in the afternoon we took the opportunity to 'plug him in' for a while and he dozed.

Favourite Son
The Beauties!

Another good moment for me was when a young helper approached to ask if I needed directions (all very well organised) as I looked round vaguely, wondering where to pay for the official photographs. "Are you graduating today?" she asked.
I know, I know, she probably thought I was a mature student - but even so - that put a spring in my LK Bennet step! (Those shoes have accompanied me to every major event since 2011, by the way...)

Later in the day I had another surprise. As we waited for our meal to be served, the family presented me with a small (but very beautiful) gift, to recognise my part throughout the last six years in making sure it was possible for both our children to leave home to go to University, despite Roch's illness. I was taken completely unawares. In fact, they made it easy for me as when Kate was away, Tom was at home and when she graduated and came home, it was Tom's turn to go, so I always had the support at home of one of our children.
It was a very precious family moment.

Seven years ago, Kate was 17 and Tom was 14 and as we faced the reality of his diagnosis, we hoped that somehow Roch would live to see them both leave Secondary school. "If only we can get them past their A Levels", we said to one another.
Now they are all grown up and they still have their father. One in the eye for the monkey.

14 July 2016

Monday, 11 July 2016

Stick out Your Tush...

Some professionals just rub me up the wrong way. Today a member of our local district nursing team called in unexpectedly. We had never met her before. The loose arrangement is once a month to check the pressure areas. We have asked them to text or call in advance but there's never any notice.  He's usually on the toilet or in the shower. Today, for a change, he was in his chair.
She didn't introduce herself, she didn't smile, she rather testily asked "Who's the Carer?" As Amelia and I were both there, this clearly confused her.
I pointedly introduced us all by name and asked for her name (she seemed surprised to be asked). Business like I can understand and work with - but offhand bordering on rude is something else again.
I get that they're busy but something about the way it's just assumed Roch never goes anywhere and will be here to display his 'pressure sites' on demand - I was forcibly reminded of Blazing Saddles and that final scene "Stick out your la la la.."
Maybe she was just having a bad day. Well, she certainly didn't make mine any better.
Watching this again did though.