Being normal

You may have noticed that I slyly mentioned a weekend away in my last post (Wheelchair woes). That weekend was made possible by Roch’s brothers. Paudie stayed with us for a few days before I went, which meant I could prepare everything and catch up at home before heading off, and Mairt came the day before I went away, and stayed for an extra day after my return.  My personal  thanks to Paudie for fixing my bike and getting the car washed!  And to Mairt – thanks for the little kindnesses like a cup of rooibos tea in bed (luxury!) and fixing a hot water bottle for me, as well as Roch.

 I spent the weekend in Bath with a good friend and had a lovely, lovely time. I knew that Roch would be well looked after in my absence and I think the brothers had a good time together.  I now know they are willing to help more often  – I said to Mairt that we had been trying to continue as normally as possible – i.e. not asking for help and going it alone, so to speak (maybe that was just me). He said, “Part of being normal is going away sometimes.” I realise that he is right – so thanks boys for the ‘dig out’ as Roch would say. Plans are going ahead for another break in July!! See you then...

My time away was paid for by the annual one off Carer’s break payment – which I applied for before the deadline (end of March) and happily was granted. Last year it was £350, this year it was £250 but very welcome, all the same.   

The sun goes down over The Royal Crescent, Bath 12/04/13

Wheelchair woes

It’s been a while now since Roch and I have been out together in the Berlingo (I can’t get him in or out on my own) and it’s been a while since he has been able to get out of his riser/recliner on his own. Most evenings he will sit in his wheelchair to watch TV as he feels trapped in the recliner and very much dislikes my having to use the hoist for him. But the wheelchair isn’t so comfortable for him to sit in all day long. That’s why we were so delighted when the new power chair was delivered two weeks ago. The new chair should have been the solution to several problems at once.

I had the last two weeks off work and we had planned that last week would be spent test driving new WAVs (wheelchair accessible vehicles). Something we couldn’t do until we had the new chair. Just the thought of being able to get out and about together, without having to rely on taxis, really cheered us up. Lately it’s felt like a long hard winter and Roch has just recovered from a heavy cold, which left him feeling pretty low.

The new chair also has several new features including a head rest, also the back can recline, the footrests can be elevated (this will help with circulation, as his poor feet get icy cold) and it will be so much more comfortable for him to relax in in the evenings, until the new riser/recliner chair arrives. Most of all, it is the key to a new freedom of movement – new wheelchair = new WAV,  and in my mind was connected to thoughts of Spring and a feeling of renewed optimism – which is why it came as such a crashing disappointment when, fully charged, it came to a halt in the middle of the High Street the first time he rolled out in it. Thankfully he was with one of his brothers at the time. I certainly couldn’t have pushed it two inches, never mind to the nearest pub! But Paudie managed with some difficulty to do just that and Tom got the distress call and headed off from home with the charger. Back they came, having charged the chair in the pub (no great hardship there) and we just assumed that it hadn’t charged properly in the first place. No harm done. So we left it charging overnight and next day Roch, this time accompanied by two brothers (Mairt had arrived in the meantime) – headed off down the road to enjoy lunch out together. Five minutes later Paudie was back. This time the chair had stopped at the end of the road! So Paudie brought the manual chair back, they transferred Roch to this and came back, one pushing Roch and the other with the power chair (no easy task to push this). Again, how lucky that his brothers were with him?

This all happened 12 days ago. The day after the second breakdown, Serco sent someone round.  At the time I felt like I was deserting the sinking ship, as I was on my way out the door to catch a train for a weekend away. But I knew that Roch and his brother would be able to manage and secretly I was pleased that I wouldn’t have to deal with this particular Serco guy as in the past I had found him at best uncommunicative and at worst downright rude. So as I sped away in my taxi (!) I took a deep breath, and let go…

Meanwhile, back at the ranch, Roch was trying to explain the problem to Serco man. The experience was frustrating to say the least – Roch told me that he felt that he wasn’t being listened to and that this guy had no appreciation of what it meant to Roch to be without a reliable motorised chair – not to mention having been stranded twice. It is an essential piece of equipment and he has to be able to rely on it.  Serco man was unable to say what was wrong with it, he was unable to get it out to his van – so in the end he left it with Roch and told him it would be collected on Monday and a substitute chair provided until it was fixed. This left Roch with the unreliable chair for the weekend. It worked intermittently and brought him round the house, had to be constantly charged – but he could not trust it to the great outdoors.  Serco did bring the old chair back the following Tuesday and they took the new chair away again for repair – but here we are with all the same problems – our purchase of a WAV has been put on hold, we are back to taxis and we still don’t have the riser/recliner either, so he is trapped in the old recliner for the evening or has to sit in the old wheelchair all day and all evening too. It would have been nice to go out somewhere over the last weekend before I go back to work, as the weather was lovely.  I guess at least we have the garden, which is delightful to sit in when it’s sunny and warm, so it could be worse.

Roch has made a complaint to Serco and they have responded by apologising profusely for their operative’s attitude and behaviour, which is good.

But we still don’t have the new wheelchair and frankly I am fed up with it.

A warning for Carers - don't try to do too much!

 

 

Doing 'nothing' is the new busy

 

There are so many things to do. My life is made up of scores of lists. Some days we get up late and by the time we are up and organised it's midday and I feel I have achieved so little (those lists in my head, reproaching me!). Today I said this to Roch. He said to me, "Doing 'nothing' is the new busy." I've been thinking about it.  I realise that my lists don't include all the essential tasks carried out as a Carer. Once I have helped Roch up, to the toilet, with his shower, dressed him, given him his meds, coffee, breakfast (if he feels like it) and he has everything he needs to hand - then the other tasks begin. By midday today all this was achieved (plus one wash on the line, another in the machine) and he was enjoying the sunshine. Not bad.

 

Sometimes we Carers need to forget about the lists and relax and give ourselves some credit for all the things we just do without thinking. Maybe we should all start to write lists entitled 'All the things I have done today.' But then, that would just be something else to do, wouldn't it? Maybe just put your feet up and feel smug instead.

 

For those of you who dislike sentiment, look away now...

I find that I dream a lot about the past these days. Last night I dreamt about Roch. In my dream he was well, and whole again. He was the young Roch, the Roch I knew in University - kind of jittery, always on the move, thin, blond and sexy. Somehow, the dream me knew there had been problems between us but in the dream those first feelings of overpowering attraction and love were flooding through me again and I needed to tell him how I felt. That nothing had changed. I needed to make him understand that, to tell him that we could work out our problems, and that nothing was as important as being together.

Those first feelings of a brand new love are long gone now. They were replaced by another, calmer love and a shared history together. But last night’s dream allowed me to experience something like those feelings again and I am grateful. In the morning, it went the way of all our dreams and left me only with the memory of what we had shared in the beginning. I felt a little sad when I woke, not least because of how he is diminished now but - what a sweet dream it was. I felt as though I had received a truly astonishing gift. The dream me had felt what it was to love him like that all over again. What we feel may be different now, but nothing is as important as being together. The real me, the MND wife me, can hug that dream close in the days and weeks and months - and years to come.

Young Roch

There's nothing good about the monkey

So here’s the thing. I hesitate to blog if I’m not feeling positive, if I’m feeling resentful, tired and fed up. Who wants to hear about the bad times? Sometimes I surprise myself and realise that underneath the daily coping exterior is an angry person. A person who fears the future and is afraid of what the monkey can do. Someone who sometimes wishes they were free to live a life that is all their own. No ties, no responsibilities to anyone else. It’s hard to admit that there are days when you don’t even like the person you care for much and you like yourself even less.

I hesitate to blog about the times in our house when anger will out. When there are misunderstandings and bad feeling, the times when the anger and frustration I believe Roch feels emerges unexpectedly from the hidden place and we are all ambushed by it. Our usually harmonious household is thrown into upset. The times when I cook a meal, hoping to tempt his waning appetite and feel angry when my attempt is undermined by an argument between him and Tom (usually just as I serve the meal) and the food turns to ashes in my mouth. Then I think “Why don’t I just serve up a plate of baked beans for everyone?” That’s nourishing and I wouldn’t feel so disappointed when my stomach churns with upset during the row and nobody wants to eat anymore.  

Families have arguments and things can’t be harmonious all the time, and there were lots of arguments before – but the monkey makes it so much worse. It complicates the former dynamic. Roch - strong, confident, manly as father and husband, must now feel that he is losing control.  He used to be able to storm out of the house in a rage – now he can’t even move from his chair.  A row with his son takes on an extra edge. There are more flashpoints. A task not carried out soon enough, a disrespectful remark, is bad enough when Dad is in the whole of his health. Now he is dependent. He tells me that sometimes he feels helpless, useless, of no account. I am sad that he feels like this but to us he is still a powerful presence, central to our family – we all seek his good opinion and want him to understand us. But he is stubborn, and sometimes it feels as if he wilfully misunderstands us and so we tie ourselves into knots to explain ourselves. If he is angry he doesn’t have the option of storming out as before, so he withdraws. It’s painful for everyone. I think we try to treat him as we would have before the diagnosis, not wrapping him up in cotton wool. I think he prefers it that way.

At the same time – other forces are at work. How long will we have him? Will we look back on these times with regret? Should we have made more excuses for him? Been kinder in our response? Is our anger with him somehow exacerbated by an unacknowledged anger directed at him because he has MND? Are we really angry with the monkey?

Let me not be the one to cast the first stone – it’s not just about Roch being stubborn or angry – I can be stubborn too, and am not above an angry outburst. At those times I don’t see him as vulnerable or disabled – I feel no need to protect him. But sometimes afterwards I do feel guilty. Who wants an angry carer? This is where the carer/wife dynamic gets complicated. The balance in our relationship is shifting.

And for him – I guess on some level he may feel that he can’t afford to alienate his carers, especially me. So after an argument he won’t ask for help if he is angry with us – it must take a major pride swallowing exercise to call your carer and ask for help going to the toilet after words have been exchanged. How he must hate that. And I hate to offer help in a mood of resentment.

As for his relationship with the children – I don’t want them to have memories of “Angry Dad” – but I suppose I can’t avoid this. They will have other memories.

The MND Association have an Optimism campaign – and I totally get this, but I think it’s another reason why I hesitate to post negative feelings or report negative thoughts. There’s a whole debate about this. I agree that people newly diagnosed and their families deserve to be introduced slowly to the realities of Motor Neurone Disease and so in terms of hard-hitting publicity campaigns, I see that these could be potentially terrifying.

But as we get further into this (and we haven’t reached the ‘messy’ part yet) it will get harder and harder to take a positive view.  Of course you have to maintain a positive attitude just to get through the days but we can’t be blind to the hardships and reality of the disease, whether physical, emotional, social or financial. In general, people don’t know enough about what it’s like to live with it and I don’t want to collude to protect everyone from the reality - sometimes I really have to be honest and say that this whole thing sucks and report on the days when you couldn’t be positive if your life depended on it. As my mother says, “There’s nothing good about MND.” We all have good days and bad days and we are all of us doing our best to get through this. I can’t say I’ll be the same person afterwards. It’s a painful journey and everything in our lives is made more complicated and more difficult because of the monkey. It’s a filthy, vicious little animal and let’s not ever forget it.