In New York

In New York

Sunday, 16 August 2015

Running on Empty

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 empty.

Recent Changes

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 that woman…

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 colleagues…

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. 

Many thanks to my unknown benefactors…


  1. this is crazy, you absolutely qualify for continuing care, possibly even live-in carer. I guarantee you it will transform the quality of all your lives

  2. and I don't know why nutritionists are so keen on overnight feeding. It doesn't seem logical. You are much more likely to have reflux or vomit lying down, even if your headrest is up, than sitting up, and you're likely to feel hungry by the afternoon. There's a neat tiny rucksack which hangs on the back of the wheelchair and holds the infinity pump and feed. Set it running and forget about it

  3. Steve, I will be blogging about our continuing quest for continuing care and I agree if we could get it I feel it would transform our lives. Roch doesn't want the overnight feeding - we have the rucksack now but think I need a charger for the pump? Will look into it. As always your comments so helpful.
    Best regards to you and Tracy x

  4. Eileen, I am so shocked by your comment. Are these people inhuman? We have been told the process must begin again now and I will be posting about this soon.
    Thank you so much for reading and caring enough to comment. x

  5. Eileen, I can't believe that the decision that the MND would not deteriorate in the next three months was taken by this person. It is unbelievable - even a GP wouldn't be qualified to make this decision. So very sorry to hear about your experience.
    Thank you again for taking the time to comment. x