We are adjusting to more changes. Everyone is feeling the
strain. As time goes on, and his illness progresses, Roch is becoming more
helpless and dependent. It’s been six years and this disease is relentless. It
affects everything, including our relationship and his relationship with the
kids. It’s easy to see the tasks involved in his
care as chores, added to my list of duties and responsibilities. In the evening
if the kids are around, we divide the chores between us – who fills the dishwasher
and tidies the kitchen and who gives Dad his bolus flush and night time meds
and helps him to bed. Roch sits
patiently waiting. Nobody really wants to do any of it. It would be so much
easier to leave everything (including the dishwasher) and just go to bed. Some
people can do that. Just go to bed at the end of the evening. Sure, we can
leave the dishwasher, but we can’t leave Roch.
So there are times when it all seems too much; times when it’s hard to
go cheerfully about the myriad tasks involved in his care 24 hours a day. Sometimes
it’s all I can do to get through them. At those times there is nothing left
over to fuel a smile, a laugh. I can’t make light of it. There are other times when we fly through the
routine, joking together, having a laugh – so deep in conversation that I
hardly notice the time going by until he is safely settled in bed. Fatigue plays a big part for me and of
course, like every relationship, there are times when we are annoyed with each
other and that makes things complicated.
A Man, his Wife and the Monkey
A good friend of mine remarked once, “It must be so
difficult now – you can’t be cross with him anymore.” Well, she was right and she was wrong. I still feel
cross with him sometimes, and we do still have arguments - as every couple does – but she's right, it's not the same and it doesn't feel right. The balance of power has shifted and we are no longer equal
participants. Even if I’m mad with him, I still have to look after him (with
very bad grace) and if he’s mad with me I can see how tortured he feels,
having to submit to my ministrations, wishing he could dispense with the necessity
and do as he used to do during our rows of the past – walk away. So now, if
there’s a row, neither of us can walk away from the other. He can’t because –
well, he can’t walk. I can’t because I still have to make sure everything is
done for him and he is cared for. Our rows never last long but it’s
unrealistic to think they never happen. In two weeks we will have been married
for 25 years. You can’t live with someone for that long and not have an
argument now and then. But they are more likely to happen when I’m running on
The first major change happened a few weeks ago, with the
advent of the hospital bed. We held out against it for a long time, but we have
said goodbye to the old marital couch now and it is gone. He was dreading the
hospital bed, but it’s working out well. It’s helping with the pressure sites
(I won’t call them ‘sores’ as the skin hasn’t broken). It has a special
mattress with a motor which emits a weird humming noise. It creates a kind of
rippling, adjusting the surface of the mattress so that the pressure points
change constantly. It’s on a low setting at the moment. The fact that we can
adjust the bed to different positions is helpful when we’re getting him up and
putting him to bed. The great thing is that he can adjust the bed positions
himself and he can still use the bars on either side to turn himself. So that’s
all good. But it’s still a hospital bed. Another line in the sand.
Change number two is the Feeding Regime. It’s getting more
difficult for Roch to eat. He can swallow but he has to think about it and it’s
so tiring for him. I don’t even mean that it’s tiring for him to feed himself.
He can’t do that anymore. It’s tiring for him to chew his food. Sometimes it’s
too much. He always has a dinner in the evening, but often during the
day he can’t face lunch. We’re relying more and more on Fortisip and Calogen.
So partly to plan ahead and partly because we need to make sure he’s getting
enough calories, the time of the Pump has arrived.
I’ve been dreading it, dreading it. Anyway, a couple of
weeks ago the dietitian came and helped me set it up. We had discussed it at a
meeting in advance and I was sure I’d said we didn’t need the high fibre feed,
but they delivered four boxes of it. So we started him on 50ml per hour for 5
hours. I was nervously checking the level of liquid as it went down. We weren’t
even sure it was going in properly that first day. But hey, it was because that
night he had an upset tummy and diarrhoea. So we stopped the feeding and I
asked the dietitian to change the type of feed. I was kicking myself – I knew I
shouldn’t have been persuaded. I must learn to trust myself more. I know him.
It took us a while to get over that whole episode and considering how long
we’ve worked to build up his confidence for outings – with the whole Qufora
thing and managing the bowel movements – well that was some setback.
Anyway, the new feed (I feel like I’m talking about a farm
animal here) arrived and we started again yesterday. I think I’ve got the hang
of it now and there’s been no upset tummy as yet. The idea is to get his system
used to it gradually so that he can have the pump feed overnight, thus freeing
him up for the day, with more energy and able to eat whatever he likes whenever
he feels like it – no pressure to eat because he knows he must. But it’s
another line in the sand. I think I’ve been feeling pretty shit about it
really. Bolus feeds were one thing but I got used to it. Second nature now. But
there’s something for me that’s psychologically very challenging about the pump
feeding. I am not finding this easy and I’m sure he isn’t either.
I am hoping it will help with his energy levels. At the
moment he sleeps through most mornings, and yesterday this meant the pump feed
started late in the day. He ended up having his dinner too late. So today we
are changing things round. A late lunch (plenty of Irish sausages, egg, waffles
and cherry tomatoes from our own garden), then starting the pump feed later on,
when he’s happy to watch Super Sunday football. We’ll see how that goes.
Feeding Roch is becoming a full time job in itself.
I was hoping we could arrange respite stay at the Hospice,
but they don’t have a space for respite until late November. That seems too
near Christmas to me and I don’t want him there in winter, and especially not
for his birthday. So we will have to look at something else. Amelia has offered
to stay so that I can get away. Bless her, she sees that I need a break.
The Hospice did offer me some complimentary therapies
though, and I had a really lovely relaxing massage last week, courtesy of
Sharon. That helped, and there are more to come. Speaking to my counsellor
always helps too and I saw her last week. I also did something I’ve been
meaning to do for ages. I bought myself a proper desk, for my writing. Amelia and
I put it together the other day. I am rapidly coming to rely rather heavily on
The Ripple Effect
When I worked for Victim Support, we talked about ‘the
Ripple Effect’ of crime. The victim is directly affected, but like a stone cast
into the water, causing ripples outwards, the effects of the crime ripple
outwards, affecting not just the victim, but their family, friends, work
The Monkey causes a ripple effect, too. It sucks the life
from the person trying to live with it, but over time it affects everyone close
to him/her too. I watch families newly affected by MND and their determination
to fight it, to raise funds and awareness. I admire them so much but I wonder how
long it will be before the Monkey begins to take its toll on them, too. Maybe I’m
just an old MND cynic. Maybe soon a cure will be found and then we will meet the first family to beat the Monkey.
Won’t that be something?
In other News, I received a present the other day. My
neighbour came back from her holiday in Spain. She had spread the word about my
Blog to some friends and I guess they must have liked it, because they gave her
something to bring back for me. Now, you know how I hate monkeys, but these
three have pride of place near my new writing desk.
My sister, Maura has a theory. She shared it with me recently and
it makes sense. She believes in a force she calls ‘The Spoiler'. Destroyer of
Good. Bringer of misery and decay. Not
Death, which comes in the Natural Order of Things, but the epitome of Evil,
which seeks out the very Best in order to despoil. Some know the Spoiler as the
Devil. I don’t believe in the Devil, but I agree with my sister and I, too believe
that there is a force for Evil in the world. Let’s call it The Spoiler.
I recently returned from Dublin, where I attended the
funeral of an old and dear friend. He and Roch had been good friends since
student days. I asked myself as others did who knew both Fachtna and Roch – why
them? Why both of them? But from there another question is raised for me – why were they both afflicted with terminal
diseases which eerily targeted strong personality traits, particular to each? One
might say defining characteristics.
Take our friend, Fachtna. Fachtna, of the ‘fierce
intellect’. A gentle man with a towering intelligence. A man who could happily
relax reading a book on quantum physics. So what does the Spoiler do? It attacks
his brain. Fachtna died of a brain tumour, which slowly consumed and destroyed
him. Is there some twisted ironic sense of humour at work here? Destroyer of Good.
I view the Monkey as an Agent of the Spoiler. Anyone who
knew Roch before his illness will remember that restless energy, the way he
could not keep still for one minute. Always on the move, spontaneous and
energised. Even at rest, a finger tapped on the table, a foot jigged up and
down. He was always the one to jump up and go out – to the gym, to the shops,
to meet friends. So what does the Spoiler do? It attacks Roch’s neurons, slowly
stripping him of his physical strength and capabilities. Bringer of Misery and
And yet, although we cannot cheat Death, we may vanquish The
Spoiler and his agents. His ultimate goal is to crush our spirit, to demean and
de-humanise. Maura and I believe that the antidote is Love, the power of which the Spoiler will never
understand. And so it was for Fachtna, surrounded throughout his
illness by the love and courage of his wife Joyce and their three children.
Roch, too has foiled the Spoiler and his agent. He says “If
anyone had told me, six years ago, that I would someday be content to sit still
all day, I would never have believed them.”He has adjusted to each cruel loss. Confined to his
wheelchair he says the world is at his fingertips; I-Phone, I-Pad, Fire Tablet.
One foot still moves, a sign of a restless energy contained. The Monkey will
take away the power in his hands and fingers and the next level of technology
will be reached. I know he will master it with his customary determination and
humour (there may be some swearing along the way). The Monkey has not
conquered his spirit.
A team of professionals stand at the ready to assist. But
perhaps more importantly, he is surrounded by the love of his family and
friends, all determined to soften each blow as it falls, to stand with him in
defiance of The Spoiler.
No, none of us can cheat Death, but like Joyce and Fachtna,
we can create something beautiful from the twisted cruelty that would see the
Bright and Beautiful brought low and have us watch in helpless despair. We can surround
the afflicted with the protection of love and friendship, shielding them from
the humiliations and indignities their illnesses visit upon them, learning
ourselves from their fortitude.With courage and love we too can vanquish the Spoiler.